# Prologue:

**Coyote and Raven**

From the time before, Coyote and Raven had watched their village. The
summer winds blew sweet with the smell of grass and bees and snakes. The
People gathered food for the coming winter. They worked together as one
to ensure all survived. Coyote and Raven watched as winter came and the
people moved inside to the warmth of their fires. Stories were told,
songs were sung, people danced and prayed and they all worked together
as one. The Old Ones were listened to and their wisdom valued and used.
The Council of Elders gathered on many occasions to discuss problems and
provide resolution to concerns.

![](media/image1.wmf){width="5.885416666666667in"
height="2.5208333333333335in"}

The women taught their daughters about having healthy babies. The men
taught their sons about being good fathers. The People worked together
as one. Coyote and Raven watched as winter moved into spring and the
little ones learned and grew. They watched as summer drifted into fall.
The little ones of the village laughed and learned to help each other.
Coyote and Raven talked with the Old Ones and passed on the ways of
sharing and never using more than what was needed. And so, the years
passed for countless generations and it was good.

Then, slowly, darkness and sadness began to creep over the land and the
village. The Old Ones started disappearing. The little ones did not run
and laugh as much. Their parents seemed sad and slow and neglectful of
the old teachings. A sickness had come to the People. It came in bottles
and cans. The ways of praying and preparing for the winter were lost.
The sickness touched everything and everyone in its path. It brought
anger and fighting, violence and despair.

![](media/image2.wmf){width="5.996527777777778in"
height="2.259027777777778in"}

Coyote and Raven watched as the village began to wither and die. It
seemed an endless winter had come to the People. Coyote and Raven still
spoke with the few Old Ones left who knew how to talk with the animals
and trees, rocks and rivers, fire and rain. The Old Ones knew that the
cause of the sickness was sadness, hopelessness, and grief. The Old Ones
knew the loss of the old ways had opened a hole in the souls of the
People. They knew that the sickness of alcohol had come to be used by
the People to fill the emptiness in their souls. Instead, it was
destroying the People, one at a time.

![](media/image3.wmf){width="3.973611111111111in"
height="3.279166666666667in"}

Watcher Woman, one of the Old Ones who knew the ways, came to Coyote and
Raven one cold winter day to tell them of the spirit sickness that was
hurting her village. She invited them back to her tiny house. The three
of them sat by the fire and warmed their toes. Both Watcher Woman and
Raven admired the fullness of Coyote's winter coat. It was so inviting,
that at one point, Raven hopped down to wrap himself in the curl of
Coyote's tail! Watcher Woman smiled at the antics of her two friends.
Then, her face grew solemn and, with a heavy sigh, she asked her friends
for help.

"Many years ago, alcohol came to our village. We three have watched the
results. We have watched over and tried to help many of the young ones
born to parents with spirit sickness. We have tried to help their
children born with Fetal Alcohol Syndrome. But still, spirit sickness is
here. We need to try something different. We need to rebuild some of the
old ways.

"My People are dying," she said. "I cannot let this happen. I need a
brave one to go to the city, to the places where there is learning and
healing. I am asking one of you to go among the humans in the city. You
are both known as Tricksters. I know you to be smart and brave. Both of
you know how to survive in even the hardest places, even in the big
cities. I ask this for the sake of the People. Will one of you help us?"

Raven hopped up on the arm of the chair where Watcher Woman sat. His
bright black eyes were shining with intelligence and a keen knowledge of
the World.

"I will go," he answered. "People still fear Coyote. They feel anger
when they see him. It will be safer for me to make the journey. Coyote
can stay with you and watch our village. I will go, Watcher Woman, and
seek the information and help you ask.

![](media/image4.wmf){width="6.05625in" height="3.4791666666666665in"}

"I remember when I went before. There was a place of learning I visited.
I can find it again and learn more. Maybe the knowledge I can gather
will help our People.

"We know of two in the village who have been affected by spirit
sickness. They have often been taken to the city for help. I have heard
them speak of this place they go. I have watched their travels. It is
the place of learning where I went before. I will go with them next time
they leave the village to go to this place. "

With those words, Watcher Woman leaned back in her chair, sighed, and
smiled. "Thank you, my dear friends. Now, let us enjoy the fire and
watch the snow as it falls outside our snug little house. "

The next morning, Coyote and Raven left the warm home of Watcher Woman
and began to explore the streets of their small village. After observing
the people walking along the roads of the village, Coyote and Raven
spied two young adults they both knew had been affected by alcohol.
These two young people were twins, one named East Light and his sister,
named Shining Eyes. Held by both her hands between her mother and uncle
was a five-year-old girl, Spring Song.

![](media/image5.wmf){width="3.786111111111111in"
height="3.5236111111111112in"}

It was these two young people that Coyote and Raven had watched come
into the World twenty years before. These young people had been exposed
to alcohol while carried in their mother's womb. Alcohol had played a
devastating role in their young lives. In their twenty years, East Light
and Shining Eyes' parents had gone out of their lives. Their aunt and
uncle had raised them. Watcher Woman, too, had been part of their lives
as they struggled to overcome obstacles, misunderstandings, and hard
times. She was there to celebrate their successes, joys, and growth.

When the twins were about five, their aunt and uncle had recognized many
of the problems they were having. With the help of Watcher Woman, they
had gone to the city to the place of learning Raven spoke of. There, the
family learned of the difficulties and struggles that can occur from
prenatal alcohol exposure. It was to this place of learning that Raven
had volunteered to go once again.

He and Coyote watched as East Light and Shining Eyes, along with Spring
Song and Auntie and Uncle, climbed into a car and began their journey
into the city. With a loud caw-caw, Raven bid Coyote farewell and took
to the air, following the car. After hours of flying, the car pulled
into a parking lot behind an enormous building. Everyone climbed out and
went inside.

![](media/image6.wmf){width="5.6722222222222225in"
height="3.2993055555555557in"}

Raven, trying not to lose sight of the group, flew to the ground and
waddled in the door behind Auntie. There was a stout lady sitting at a
desk right in front of the door. She smiled at East Light and Shining
Eyes and pinched Spring Song's chubby cheeks. She did not notice the
large black bird scuttling down the hallway at the heels of Auntie and
Uncle.

At the end of a long hall, another door was opened by a smiling man in a
white coat with a moustache and funny piece of cloth at his neck. Metal
hung out of a pocket of his coat. He greeted the family warmly and
invited them inside. Quicker than Raven could move, the door shut with
Raven left on the outside. Now what was he to do?

Raven need not have worried. As he sat there, a young woman, also in a
white coat, came scurrying down the hall carrying a box. The door swung
open. Raven, close on the heels of the young woman, dashed into the
room. He stopped in surprise. He had expected only the family and the
man in the white coat. What he saw was a large table at which at least a
dozen people sat!

Now, Raven was worried that he might be seen and chased from the room.
As quietly as he could, he walked under a line of chairs against a wall.
The other people in the room were men and women of many ages. They were
intent on listening to what the man in the white coat was saying as he
stood at the front of the room making marks on a board on the wall.

![](media/image7.wmf){width="5.9319444444444445in"
height="4.627777777777778in"}

As Raven hid under the chairs, he noticed a window at the back of the
room. Making himself as small as possible, a difficult task for a very
large bird, he flew to the window and began to walk on the ledge. Then,
as with the others in the room, he listened to the man in the white
coat. In a short period of time, Raven realized that he was seeing a
collection of special people gathered to help East Light and Shining
Eyes, much as the council of elders came together in the past to help
the People of the village.

The man in the white coat with salt and pepper hair was a special doctor
who looked at East Light, Shining Eyes, and Spring Song's faces and
hands. He measured how tall they were, how much they weighed and the
size of their heads. Two other people in the room talked to Auntie and
Uncle. They asked questions about how well the twins and Spring Song had
done, their successes and their problems. Other people in the room
talked to the twins. They gave them special tests to do and listened to
how they talked. They asked the twins about their lives and things they
wanted to accomplish.

Raven hurried from ledge to ledge, trying to take in and remember all he
heard and saw. There were strange names given to the people in the room:
psychologist, speech therapist, speech pathologist, occupational
therapist, educational specialist, family advocate, social worker,
dysmorphologist, epidemiologist, pediatrician, legal aide, case manager,
dentist, nurse, and physical therapist.

![](media/image8.wmf){width="4.910416666666666in" height="3.3375in"}

Raven had never heard so many strange words. Did these people have other
names? Only later in the day did Raven realize these were not names like
Raven or Watcher Woman. They were titles that described the type of work
or activity the people around the table performed. Raven was amused. It
seemed that humans would do anything they could to complicate even the
most simple of situations! However, what Raven heard brought him both
fear and joy. He could see that Auntie and Uncle, East Light and Shining
Eyes were all hopeful and overwhelmed by what they heard.

At the end of several hours, the man in the white coat gathered everyone
back around the large table. "Today," he said, "we have met for our
second time. The first time was fifteen years ago. How quickly the time
has gone. Now, East Light and Shining Eyes are grown and the time has
come to make decisions about how they will live their adult lives.

"All who are gathered here are helpers. We can answer your questions as
best possible, give you suggestions and the names of people here in the
city to talk to that can help," the man in the white coat said.

"But," he added, "You will need help and support when you return to the
village. For that, we do not have much to offer. "

At these words, Raven understood his purpose in coming to this place. It
would be his job to help rebuild the council of elders in the village.
How was he to do this? His tail feathers drooped in frustration as he
pondered the situation. He was thinking so hard, he almost failed to
notice that the family was saying good-bye and leaving the building.
Raven quickly flew to a tree near where Uncle had parked the car. As the
family got in the car and drove away, Raven, once more began to follow.

This time, after only a short drive, the car stopped and everyone got
out and went into a small house. There, a woman of many years greeted
the family. She took East Light and Shining Eyes into a room and spent
some time talking to them. Raven searched in vain for an open window
through which he could listen. Finding one, he took up his place to
listen.

Soon, the family drove off again, this time to a group of large
buildings. Raven flew to each building and sought out a place from which
he could watch and hear all that went on. Finally, at the end of a long
day, after several more stops and meetings, the family drove home. Raven
was exhausted from flying around the city and following the family and
listening to what all the various helpers had had to say.

![](media/image9.wmf){width="5.93125in" height="3.277083333333333in"}

As they started the journey home, all but Spring Song failed to notice a
large, tired Raven sitting on a wire as the car passed. Spring Song
giggled as the dusty black bird cawed loudly and flapped his wings in
greeting. She had watched the big bird as he had watched the family.
Only she seemed to realize that Raven was there to learn. She giggled in
such a way that her mother stopped her conversation and asked her
daughter what made her laugh in such a delightful manner. This made
Spring Song laugh more!

As the family drove out of sight, Raven swung on his wire for quite some
time. "I have much to tell Watcher Woman and Coyote," he mused. "Yet, I
still do not know all I need to help our special souls. I will stay here
in the city and see what I can learn. I will come back to the places of
learning every day. I have an idea that those people were like our
council of elders. But, I still do not know what to do to help. "

"Well", he sighed. "It is time for food and sleep. I will try again
tomorrow. "

Far off, the family drove back into the village. Sitting near the road
at the start of the village was a brown Coyote, looking intently at each
car that drove by. He came to attention when the family drove past him.
Only the small girl inside noticed the attentive animal. When no Raven
appeared above the car, Coyote lay down, his head on his paws, his ears
twitching, and worried about his feathered friend.

![](media/image10.wmf){width="2.6777777777777776in" height="2.91875in"}

Day after day, week after week, month after month, Coyote waited for his
companion to return. In the village, the family continued their lives.
More children were born with the same types of problems as East Light
and Shining Eyes. More children lost their families to spirit sickness,
the disease of alcoholism. More and more of the old ways disappeared.
More and more, Coyote worried for his People in the village and for his
large black feathered friend.

It was after the family made another trip to the city that Coyote,
sitting on the porch of Watcher Woman's tiny home, saw a black speck
wheeling in the sky at sunset. It was Raven returning home at long last.

![](media/image11.wmf){width="6.057638888888889in"
height="3.5743055555555556in"}

"I have many stories to tell you and Watcher Woman", Raven sighed,
"Stories of hope and fear, stories of help and neglect, stories of joy
and sadness. We have much to do. We need to rebuild our council of
elders. We need to teach the People how to help our special souls. "

"Yes", Raven said, "we have much to do. "

He cawed loudly and many times. Coyote joined him, howling in chorus
with Raven. No one, however, in the village noticed or understood what
they were saying, no one that is, but an old woman with a sweet smile
and a tiny child with old eyes and dimples.

# Introduction

*Parents see their children in terms of their needs for any specific
service, e. g. psychosocial needs, health issues and those needs at any
certain time in their lives. Professionals see children in terms of
their own specific domain, e. g. psychology, medicine, social work. My
job, as a family advocate, is to be the spot where those two lines
converge and can be incorporated.*

*- Julie Gelo, Family Advocate FAS-DPN, 2002*

The primary roles of professionals working in the field of Fetal Alcohol
Spectrum Disorder (FASD) are diagnosis, treatment, advocacy,
facilitation, and support. Along the way, planning for the future and
program development may also be included. These roles are similar to
what was expected and provided by the council of elders and leaders in
traditional Native communities. This manual is the companion to [A
Practical Native American Guide for Caregivers of Children, Adolescents,
and Adults with Fetal Alcohol Syndrome and Alcohol Related
Conditions.]{.underline}[^1] That manual was written in a developmental
manner, addressing needs, concerns, and interventions by specific ages,
ultimately reaching across the lifespan. This manual is organized, as
Ms. Gelo suggested, by specific domains that are addressed by
professionals. Within each of these domains, the concerns and needs for
that domain are addressed, where appropriate, in chronological order.
This manual is intended to provide an overview of FAS and FASD and act
as attendant guidelines for professionals working with this special
population.

## A Brief Historical Overview

In traditional American Indian and Alaska Native cultures, there was
often a group of elders who took responsibility for making decisions in
the community. The years of experience and knowledge resting in the
elders was respected and used for ensuring the health of the entire
community. In some communities, there was a leader for hunting, one for
planting, one for fishing, one for healing, and one for commerce or
trade, to name but a few.[^2] In times of conflict, a council of elders
would meet, discuss problems and concerns, and arrive at solutions.
Knowledge flowed from one generation to another, as the rivers flowed
and the seasons moved from one into another.

![](media/image12.wmf){width="6.428472222222222in"
height="3.354861111111111in"}

Life had been lived in this manner for many generations. After the time
of contact, life changed drastically in Native communities. Disease,
displacement, war, and governmental policies all contributed to dramatic
alterations in the lives of Native people. Disease led to the decimation
of communities, removing through death the elders and keepers of wisdom.
The imposition of boarding schools disrupted language, traditions,
healing, and culture.[^3] The consequences of these disruptions have
been detailed in thousands of articles and books. They include, but are
not limited to, alcoholism, depression, violence, loss of parenting
skills, and in the present case, Fetal Alcohol Syndrome (FAS) and Fetal
Alcohol Spectrum Disorder (FASD).

There is a caveat that needs to be stated at this time. There has often
been a tendency to see all American Indian and Alaska Native people as
one with the same traditions, religions, languages, and issues. In
reality, there are hundreds of historical tribal groups. With
legislation passed in the twentieth century, the legal tribal entities
changed form.[^4]^,^[^5] The diversity and richness of American Indian
and Alaska Native culture, despite the attempts at eradication, exists
to the present day. In many communities, these traditions have formed
the basis for a renewal of pride, sobriety, and rebuilding families.[^6]
It is important, in reading this document, that stereotypes and myths
are not the basis of beliefs and practices.

This is particularly true regarding the use of alcohol in Native
communities. There is a perception that all American Indians and Alaska
Natives drink. In actuality, the consumption of alcohol varies greatly
from group to group and community to community. Some studies find over
half of all Native people do not drink at all. [^7] This fact is very
important in early identification and assessment of Native children,
adolescents, and adults with FASD and for all Native children. It should
not be assumed that all Native children with a learning problem, small
size, behavioral problems, or a combination of these factors have FAS or
FASD. A thorough history, including prenatal alcohol exposure, should be
done with every child who is referred for the types of services
discussed in this manual.

While stereotypes should not form the basis of assessment and
identification, there are generalizations that can be made regarding
traditional Native history.[^8]^,^[^9]^,^[^10] In many, if not most
Native communities, experience and tradition, family and knowledge, were
factors in determining who would be leaders. Children and adults with
birth defects and problems were not shunned. Often they were viewed as
people with gifts and valued for their special knowledge. This is a very
different view of abilities and disabilities than is frequently held in
contemporary communities.

In summary, the history of American Indians and Alaska Natives has often
been one of cultural, community, family, and personal trauma and
disruption. This disruption has come from the loss of life through
epidemics, war, and the ravages of alcohol. Many, if not most, tribal
groups were displaced onto land that was not traditionally theirs. In
many situations, historical enemies were placed on the same reservation,
leading to present-day political issues and conflict.

Due to the loss of traditional food sources and the implementation of
other governmental practices, many Native people starved and were forced
to change from a subsistence diet to commodities. The latter diet has
frequently been associated with increased rates of diabetes and other
health issues.[^11] In addition, the loss of the family support through
termination of reservations, relocation to cities, and boarding schools
has led to emotional and spiritual devastation. All of these factors
have led to increased levels of alcohol use, violence, physical and
sexual abuse, and loss of Native children. A consequence of the
increased alcoholism rates has been the appearance of Fetal Alcohol
Syndrome in Native communities. All of these factors must be considered
in working with Native individuals and families affected by Fetal
Alcohol Syndrome and Fetal Alcohol Spectrum Disorder.[^12]

## Fetal Alcohol Syndrome: A History and Diagnosis

Stereotyping is not just an issue with Native people. There are also
many stereotypes around people who drink, and around children,
adolescents, and adults with FASD. As with any group of people, those
with FASD are diverse and complex. The effects of prenatal alcohol
exposure can range from memory problems and attention deficits to severe
physical malformations and profound mental
retardation.[^13]^,^[^14]^,^[^15] It is important to ensure that any and
all intervention and treatment programs are tailored for the individual
versus taking a "cookie-cutter" approach.

The University of Washington in Seattle, Washington, is where FAS was
first identified in 1973.[^16] Over the past nearly thirty years, there
have been many changes in the terms and criteria used to assess and
diagnose people possibly impacted by prenatal alcohol exposure. The
terms commonly used have included: Fetal Alcohol Syndrome, Fetal Alcohol
Effects, Alcohol-Related Birth Defects, Alcohol-Related
Neurodevelopmental Disorder, Probable Fetal Alcohol Effects and Syndrome
(See Figure 1), Static Encephalopathy, Alcohol Exposed, and Fetal
Alcohol Spectrum Disorders. For the purposes of this manual, Fetal
Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorder (FASD) will
be used. These are medical diagnoses and should be made only by a
qualified physician.[^17]

**Figure 1**

**FAS / FASD Relationship**

**Changing Terms Across Time**[^18]

> **FAS FASD**

**ARND FAE PFAE PFAS FAS**

It is recognized that it is likely Native American women who use alcohol
also use other substances such as tobacco, cocaine, or methamphetamine.
FASD is the focus of this manual and this term will be used to describe
issues that may be a combination of alcohol and drug related issues.

In 1997, a formalized diagnostic categorization system was implemented.
The criteria for diagnosing Fetal Alcohol Syndrome are as follows:

-   Growth deficiency, at some time in the life span, in three areas:
    height and/or weight and head circumference.

-   A specific pattern of facial abnormalities including small eyes, a
    long, smooth philtrum, and a thin upper lip.

-   Brain damage including: mental retardation, attention deficits,
    behavioral and learning problems, microcephaly, and abstracting
    difficulties.

-   Confirmation of prenatal alcohol exposure.

![](media/image13.wmf){width="4.995138888888889in"
height="3.473611111111111in"}

Each of these categories is rated on a 1-to-4 scale with 4 indicating
significant deficits in the first three areas listed and with
significant alcohol exposure. It is possible to have brain damage and
confirmed prenatal alcohol exposure along with behavioral problems in
the absence of the growth retardation and facial abnormalities.[^19]

There are two other categories examined in the Fetal Alcohol
Syndrome-Diagnostic and Prevention Network clinic approach. These are
prenatal and postnatal factors. Prenatal factors of concern could
include polysubstance abuse, physical problems, or illnesses on the part
of the mother. Postnatal factors might include early childhood trauma,
multiple living placements, neglect, abuse, and loss of family. [^20]
Too often, these factors are present. They will frequently determine
what types of clinical services will be needed for the children and the
mother and other family members.[^21] Hopefully, the information
contained in this manual will be of aid in identifying, screening,
referring, and providing appropriate support and treatment.

There are a wide variety of effects possible from prenatal alcohol
exposure ranging from the full Fetal Alcohol Syndrome to a lack of
physical effects but with significant behavioral problems. That is the
purpose for the 4-point code. This code allows a detailing of the
variety of effects and appearances of difficulties. For the purpose of
this manual, the term Fetal Alcohol Spectrum Disorder (FASD) will be
used unless otherwise specified for a singular situation.

Alcohol is a potent teratogen, a substance that causes birth defects.
Alcohol freely crosses the placenta with blood alcohol concentrations in
the fetus reaching or exceeding those in the mother. The fetus has
little ability to metabolize the alcohol.

Alcohol as a teratogen can affect and damage fetal cells as well as
those in the placenta, umbilical cord, and developing brain.[^22]
Hypoxia (a lack of oxygen) can result from impaired placental/fetal
blood flow, leading to increased risk of brain damage and subsequent
cognitive, physical, and behavioral disorders.

Unfortunately, it is not generally possible to predict the occurrence or
severity of alcohol-related birth defects. There is a multiplicity of
factors that contribute to the presence of FAS/FASD. This includes, but
is not limited to:

-   Timing of exposure

-   Duration of alcohol consumption

-   Dosage (amount) of alcohol consumed

-   Physical health and possibly, age of the mother

-   Prenatal care

-   Polysubstance use or abuse

-   Combinations of one or more of the above factors

If possible, all of the listed information should be acquired when
screening for and diagnosing FAS/FASD.[^23]^,^[^24]

### 

### **Formation of the Treatment Team:**

At all times, it is critical that each child diagnosed with FASD or
suspected of having one of these conditions, be at the center of a
treatment team. The treatment team should have a health professional,
social worker, teacher, family advocate, counselor, and case manager, at
a minimum. Any baby that is known or suspected of having such exposure
should be screened at birth for the problems listed below and be
assigned a case manager who can coordinate the creation of a team and
facilitate services for the child and family. The ideal, of course, is
for all women to be prenatally screened for substance abuse and to
receive adequate and frequent prenatal health care.

The model FAS-DPN diagnostic team at the University of Washington,
consists of developmental and clinical psychologists, a pediatrician,
school specialist, an occupational therapist, a speech pathologist,
family advocate, and an epidemiologist. Its members are trained in FAS
and its long-term effects. In turn, they have trained other
professionals throughout the country and abroad. However, it may not
always be feasible for communities to have all these professionals. In
these cases, such as in rural areas, it is important that someone takes
the lead of the team and finds other community resources with whom to
coordinate.

**Routes to Identification:**

Rarely are children with FASD identified at birth. Doctors may have
misconceptions about which women might be at risk for having children
affected by prenatal alcohol exposure.[^25] Woman who are drinking
heavily and using other substances may not receive adequate prenatal
care. If they are seen for prenatal care, they may not be asked about
substance and alcohol use.[^26] Information should be provided to all
pregnant women about the possible risks of alcohol related birth
defects, and screening should be done at any point when women enter the
health care system, be it in the first week of pregnancy or at
delivery.[^27]^,^[^28] Resources for screening questionnaires are
included in the Appendices of this manual.

It is more common for the child to be identified when they begin school
and start displaying increasing learning and behavior problems. Many
children with behavioral problems receive a diagnosis of Attention
Deficit Hyperactivity Disorders (ADHD). Other children will be viewed as
underachievers. In actuality, these children may be experiencing the
problems that accompany prenatal alcohol exposure. In these situations,
it is important that the teacher or other school personnel take the lead
in ensuring the child receives appropriate screening, diagnosis and
intervention.

Another common path for children to become involved in screening is
through the social welfare system. Many mothers and fathers, as a
consequence of their substance abuse, are not able to care for their
children.[^29] These children commonly enter foster care or group care.
They may display many of the learning and behavioral concerns associated
with prenatal alcohol exposure. [^30] Alert social workers have been
useful in facilitating screening and diagnosis as well as being part of
a treatment team.

# A Guide to this Manual

At the end of this section, there is another portion that contains
information which is also presented in [A Practical Native American
Guide for Caregivers of Children, Adolescents, and Adults with Fetal
Alcohol Syndrome and Alcohol Related Conditions]{.underline}.[^31]
Normal development, by age, along with developmental concerns associated
with FASD, is listed. Specific interventions are outlined. In addition,
there are matrices, by age, which address each of the domains to be
covered in this manual. The purpose of these lists and matrices is to
aid you, the professional, in formulating a treatment plan and making
recommendations for the families and clients with FASD with whom you
work. Included in this manual, is a section written to help
professionals working in this field to avoid "burnout" and isolation.
Healthy professionals are as necessary as healthy parents to ensure the
best support and services possible for families and individuals affected
by prenatal alcohol exposure.

This manual is intended for a wide variety of professionals, including,
but not limited to: nurses, physicians, teachers, psychologists, social
workers, case managers, case aides, physical therapists, occupational
therapists, school counselors, drug/alcohol counselors, early
interventionists, lawyers, judges, correctional officers, and
administrators. In some cases, special suggestions might be directed
towards one specific profession. In general, however, the information
and recommendations in this manual are guidelines to aid in recognizing
concerns and strengths for patients with FAS/FASD and to help develop
appropriate programs for clients with FASD. As a professional, you may
not have everyday contact with children or adults with FAS. Nonetheless,
understanding the skills, strengths and limits of patients with FASD can
make you a powerful ally and aide in working with the person and family
affected by FASD.

Sections II-VI cover a variety of domains commonly addressed by
professionals including health concerns, legal issues, family/parenting
issues and needs, psychosocial concerns, and educational/vocational
needs. Each of these domains is intended to provide information across
the lifespan of the patient. These issues and concerns that are seen in
young children are often precursors to the problems reported in
adolescents and adults. The interventions and structure that aid in
younger children are also helpful for older people with FASD, albeit in
a different form. It should be noted that not each and every issue could
be thoroughly covered in a document this size.

Section VII, Family Issues and Needs, is a special section specifically
intended to provide support for providers working in this field. Fetal
Alcohol Syndrome is thought to be the number one known cause of mental
retardation in the United States and is totally preventable.[^32] When a
diagnosis of FASD is made, it is often a "diagnosis of the mother, the
father, the community, and the society." These factors make it difficult
for people to acknowledge and address this devastating birth defect.
While there is often sympathy and support for individuals and families
with other birth defects, there may be little for the women who produce
children with alcohol related birth defects.

People who have FASD are commonly viewed as having hopeless defects with
no chance of positive outcomes. Myths such as these have also led to
professionals in this field being viewed as working in a "gloom and
doom," hopeless situation. In reality, as will be seen in this manual,
there is much that professionals and caregivers, working together with
patients with FASD, can achieve. Practicality is a key in addressing all
of these issues. Improving the lives of children, adolescents, and
adults with FASD based on practical suggestions, structure, support,
caring and concern is the goal of this manual.

At the back of the manual are several appendices. You will find
information on diagnoses associated with FASD, medications commonly used
in treating those with FASD, assessment tools that may be of use in
working with this special population, a resource guide, and a glossary
of terms. One of the primary concerns in the field of FASD, is the
number of children that are not identified until well into the school
years when their behavior becomes more concerning.[^33] In addition to
helping professionals design appropriate interventions for babies and
children already identified, the information contained in these pages
will encourage health professionals to become proactive in asking about
alcohol use, screening, and identifying babies, children, and mothers
and fathers at-risk.

As the title of this manual indicates, practicality is the key in
working with families and individuals impacted by FASD. Keeping it
structured, simple, concrete, and practical, with a healthy dose of
humor thrown in, is the guiding principle for this manual and for the
field of FASD. Hopefully, with these factors and approaches, we can be
part of the solution for aiding and supporting these special people in
our communities.

Three final comments before we get down to business! While this manual
is written from and to a Native American prospective, it is important to
remember that there are many sober families in Native communities and
there are many people in non-Native communities who struggle with the
disease of alcoholism and FASD. It is also critical to remember that
FASD, while it is now thought to be the number one cause of mental
retardation in this country, still carries a stigma and fear that few
other developmental disabilities have. Approaching the people affected
by prenatal alcohol exposure and their families with kindness,
gentleness, and putting away any preconceived notion is crucial.
Alcoholism and FASD are equal opportunity problems. Support should also
be "equal opportunity."

Regarding the term "Native American," this term is intended to include
Alaska Natives as well as Native people born in the contiguous United
States and Hawaii. Given the diversity of groups and the variety of
terms that can be selected, "Native American" was chosen for the sake of
simplicity and is meant to cover all groups previously described. With
these cautions in mind, it is time to fully address this devastating
life-long birth defect.

**Section I:**

# Developmental Milestones and Issues 

*Jerilynn was a twenty-five year old single woman of Native descent who
had been adopted off a reservation in the Southwest when she was three
years of age. She was the youngest of six children, all with different
fathers. Her mother died of alcohol-related causes when Jerilynn was
two. She was unsuccessfully placed in a relative foster home until her
adoption into a non-Native family at age three. Her adoptive parents had
concerns over her small stature, chronic ear infections, and behavioral
difficulties. Only the ear infections seemed to resolve the older she
became.*

*Jerilynn did well in her early years in school, but began to show
significant learning problems as she entered third and fourth grades.
These problems became more pronounced and, finally, Jerilynn dropped out
of school at age 14. She began hanging out with a rough group of older
youths, was picked up on felony assault charges at age 16, and had her
first child within the next year.*

*It was suggested to Jerilynn on many occasions that she receive
long-term birth control and return to school. She was on probation for
multiple assaults and did well while in jail. However, once out, she
would miss her probation appointments, begin drinking, and involve
herself in situations that continually placed her at risk. At the age of
twenty-five, she was in jail for multiple probation violations. She had
lost custody of her five children due to abuse and neglect, despite
repeated attempts by probation and children's services to involve her in
support services.*

Jerilynn is not a "real" person, but is a composite of many clients that
the author has met over the course of the past twenty-five years. As you
progress through this manual, Jerilynn's story and needs will unfold. At
the end of each section, is a matrix for the concerns discussed in that
particular section. These matrices are intended to aid the professional
in identifying both concerns and resources for a patient in each domain.
Jerilynn's story will be addressed in these matrices to illustrate the
ways in which professionals can identify and communicate needs and
services. While there are similarities between patients with FASD, it is
also important to remember each person is an individual and should be
dealt with as such. The following tables were first published in [A
Practical Native American Guide for Caregivers of Children, Adolescents,
and Adults with Fetal Alcohol Syndrome and Alcohol Related
Conditions]{.underline}.[^34] They are used here to help provide
consistency of information from one manual to the other.

**Normal Development by Age:**

*How can I know what is wrong with my baby if no one tells me what is
right and what I should expect?*

> *- A question posed by a 17 year old mother of a child prenatally
> exposed to alcohol and other drugs*

It is a common ironic statement that children "don't come with a user's
manuals." This comment is often accompanied by a wistful sigh. In fact,
many people, professional and lay, do not always have a clear sense of
what should be expected at any point in time in the development of a
child, adolescent, and adult. Below are lists of common developmental
milestones, by ages of birth to five years, six to eleven years, twelve
to seventeen years, and eighteen years and up. A second group of lists
details the issues and deficits commonly associated with prenatal
alcohol exposure. These lists are intended as quick guides, not as
complete references. It is important, however, to keep the differences
between normal development and deficits in mind when working with the
individual with FASD.

**Table 1**

**Normal Development**

**Ages One Month to Six Months**

  ------- --------------------------------------------------------------------
  One     
  Month   

          Turns head from side to side

          Hands are held in tight fists

          Brings hands within range of eyes and mouth

          Has strong reflex movements

          Moves arms in jerky movements

          Can focus on objects 8 to 12 inches away

          Eyes tend to wander and may cross

          Will prefer the human face to other objects

          Hearing is well developed

          Can recognize a variety of sounds

          Will begin to turn to familiar voices and familiar sounds

          Prefers soft touch and gentle handling

          Prefers sweet smells and avoids bitter smells

          Sleeps three to four hours

          Needs to be fed round the clock, every three to four hours
  ------- --------------------------------------------------------------------

  -------- --------------------------------------------------------------------
  Two to   
  Six      
  Months   

           Raises head and chest when on stomach and progresses to rolling from
           front to back and back to front

           Stretches legs out, kicks, and then progresses to sitting and
           supporting his own weight on his legs

           Can grasp items and bring items to his mouth

           Starts to smile in response to others and is more expressive in
           other ways

           Starts to imitate others, e. g. waving

           Becomes interested in looking in the mirror

           Engages in and enjoys social play

           May sleep through the night

           Longer periods between feedings
  -------- --------------------------------------------------------------------

> The first month of a baby's life is a time of enormous change and
> growth. These milestones are used as marks to ensure the health of
> each child. However, it should be remembered that there are individual
> differences for each baby. Some babies will sleep through the night
> and eat on a regular schedule. A baby will lose weight right after
> birth but, in a short period, the baby will gain it back.
>
> If you have questions, make sure you talk to your baby's doctor.

**Table 2**

**Normal Development**

**Ages Seven Months to Two Years**

  -------- --------------------------------------------------------------------
  Seven to 
  Twelve   
  Months   

           Can get into a sitting position without help

           Crawls and progresses to standing and walking or preparing to walk

           Can put objects in a container and take them out

           Can use several objects correctly and often enjoys doing so, e. g. a
           telephone or cup

           Starts to help caregiver when getting dressed, e. g. puts out hand
           or leg

           Begins to demonstrate more language skills and receptivity, e. g.
           can respond to "No" and shake his head "No"

           Begins to babble, imitate sounds, and use simple words

           Easily recognizes several people and may begin to show anxiety when
           separated from mother or father, may be shy around strangers

           Starts to recognize people and objects by name

           Begins to have preferences for specific people and objects, e. g.
           favorite toy

           Begins to copy others in his play

           Begins to hold crayons
  -------- --------------------------------------------------------------------

  ------- --------------------------------------------------------------------
  One to  
  Two     
  Years   

          Can walk alone, carry items while walking, and pull toy, e. g. pull
          wagon behind him

          Has progressed from simply walking to running

          Can go up and down stairs with support

          Can climb onto furniture without assistance

          Can begin to kick large objects

          Shows preference of one hand over the other

          Fine motor control becomes more developed

          Language skills begins to improve, e. g. making simple sentences,
          saying more words

          Can imitate and repeat words

          Is learning names of people, body parts, objects in his world

          Can begin to discriminate objects by color and shape

          Begins to demonstrate his imagination through play

          Interactions with others becomes more important

          Begins to demonstrate his awareness of himself as an individual and
          show separation anxiety

          May begin to defy parental directions

          Copies actions of others, adults and other children
  ------- --------------------------------------------------------------------

> Rapid changes continue as the baby grows and develops more of a
> noticeable personality. Baby's likes and dislikes become more
> apparent. Baby's brain shows rapid development during this time and,
> as he grows, baby begins to deliberately use his skills.

**Table 3**

**Normal Development**

**Ages Two Years to Four Years**

  ------- --------------------------------------------------------------------
  Two to  
  Three   
  Years   

          Motor skills increases, e. g. , able to pedal a tricycle

          Can climb, bend over, keep his balance and run easily

          Can hold a pencil and make more deliberate strokes

          Can open and close jars and turn door handles

          Begins toilet training, usually completed prior to age three

          Can follow more complex directions

          Speech improves and becomes understandable

          Sentence length increases

          Begins to use pronouns and words such as: "on," "in," "around,"
          "under," and "over"

          Play includes putting puzzles together

          Make-believe play increases and becomes more complex

          Begins to understand more complex concepts, including time,
          possession, e. g. , "his," "mine"

          Becomes more sociable and can take turns
  ------- --------------------------------------------------------------------

  ------- --------------------------------------------------------------------
  Three   
  to Four 
  Years   

          Gross motor skills improves, e. g. , standing and hopping on one
          foot

          Can toss ball, generally overhand

          Balance improves to allow forward and backward movement

          Fine motor skills increases, e. g. able to copy designs, use
          scissors

          Drawing of a person includes several body parts

          Understanding of complex concepts and appropriate use of grammar
          increases

          Sentence structure becomes more complex and child uses more words

          Imagination becomes more active, e. g. , tells stories; has
          imaginary companion

          Is less self-centered, understands sharing and cooperation

          Understands colors and knows their names

          Can follow increasingly complex directions

          Memory improves, e. g. , can recall stories he is told or read
  ------- --------------------------------------------------------------------

**Table 4**

**Normal Development**

**Ages Four Years to Five Years**

  ------- --------------------------------------------------------------------
  Four to 
  Five    
  Years   

          Can hop, turn somersaults, swing, climb, and is learning to skip

          Fine motor skills continues to increase including dressing and
          undressing, using table utensils, caring for own toilet needs

          Begins to print

          Begins to understand and express more complex concepts, e. g. ,
          future tense, name and address, game and household rules, and
          telling stories previously heard

          Begins to count, often up to ten objects or more

          Becomes more sociable, wants to please and be liked by friends

          Becomes aware of sexuality and gender

          Can usually tell fact from fantasy
  ------- --------------------------------------------------------------------

**Table 5**

**Normal Physical and Language Development**

**Ages Six Years to Eleven Years**

  ------------- --------------------------------------------------------------------
  Physical      
  Development   

                Has reached most of their adult growth by age 11

                Motor control improved

                Uses cursive writing, not just printing

                Gross motor control improves; child can swim, ride a bicycle without
                training wheels, catch and throw balls, participate in team sports

                Visual/motor skills are well developed

                Most permanent teeth, with the exception of wisdom teeth, are
                present

                Begins to show signs of sexual maturity and the onset of puberty
  ------------- --------------------------------------------------------------------

  ------------- --------------------------------------------------------------------
  Language      
  Development   

                Can pronounce all letters of the alphabet

                Can "sort out" and selectively attend to important information from
                background noise

                Can attend to, recall, and repeat a list of various items

                Can recognize and use irregular verbs and plurals

                Can recognize and correctly use syntactic rules

                Can use language to articulate abstract concepts
  ------------- --------------------------------------------------------------------

**Table 6**

**Normal Cognitive and Emotional Development**

**Ages Six Years to Eleven Years**

  ------------- --------------------------------------------------------------------
  Cognitive     
  Development   

                Can grasp abstract concepts and formulate the same

                Can begin to separate reality from fantasy

                Can begin to predict the outcome of his or other's behavior

                Can understand and adhere to social rules and expectations

                Is able to read, write, spell, do addition, subtraction,
                multiplication, and division; and understand the value of money
  ------------- --------------------------------------------------------------------

  ------------- --------------------------------------------------------------------
  Emotional     
  Development   

                Can self-regulate, self-soothe, and work on their own for increasing
                periods of time

                Can inhibit own behavior

                Can enjoy and feel secure in their parental relationship and take an
                interest in parents and peers

                Learns to deliberately manipulate adults to get his own way

                Begins to learn and incorporate limits

                Can organize thoughts, including those related to feelings

                Can experience disappointment without displaying temper tantrums

                Can fully participate with peers, understands the principle of
                cooperation

                Begins to demonstrate interests in hobbies, games and fully
                understands the concept of possession and sharing

                Begins to understand other's feelings and how his behavior impacts
                others
  ------------- --------------------------------------------------------------------

**Table 7**

**Day-to-Day Living Skills**

**Ages Six Years to Eleven Years**

  ------------ --------------------------------------------------------------------
  Day-to-Day   
  Living       
  Skills       

               Can choose his own clothes and fully dress self

               Can dress in anticipation of changes in the weather

               Can take care of basic hygiene needs without being reminded or
               having assistance, e. g. brushing teeth, taking a bath, combing
               their hair

               Can do basic chores, e. g. make bed, clean their own room, help out
               in the kitchen and in the yard
  ------------ --------------------------------------------------------------------

**Table 8**

**Normal Physical and Cognitive Development**

**Ages Twelve Years to Seventeen Years**

  ------------- --------------------------------------------------------------------
  Physical      
  Development   

                Full height is reached by most adolescents

                Bone growth is complete and musculature growth increases

                Internal organs increase in size

                Menstruation begins with most girls; if it has not previously
                started

                Secondary sexual characteristics are well developed, e. g. breasts,
                hips, and penis. Body hair is present, voice deepens significantly
                for males and moderately for females
  ------------- --------------------------------------------------------------------

  ------------- --------------------------------------------------------------------
  Cognitive     
  Development   

                Development of abstracting abilities and clearer understanding of
                abstract concepts

                Self-concept/Identity: Adolescent can begin to describe himself in
                terms of adjectives, e. g. "kind", "smart", "tough"

                Egocentrism: Adolescent can recognize others as having feelings, but
                still focuses on self as the "center of the universe"

                Development of more organized thought

                Able to link cause and effect

                Development of more detailed problem-solving strategies

                Are able to distinguish fact from fantasy
  ------------- --------------------------------------------------------------------

**Table 9**

**Normal Emotional Development and Social Skills and Day-to-Day Living
Skills**

**Ages Twelve Years to Seventeen Years**

+---+--------------------------------------------------------------------+
| E |                                                                    |
| m |                                                                    |
| o |                                                                    |
| t |                                                                    |
| i |                                                                    |
| o |                                                                    |
| n |                                                                    |
| a |                                                                    |
| l |                                                                    |
| D |                                                                    |
| e |                                                                    |
| v |                                                                    |
| e |                                                                    |
| l |                                                                    |
| o |                                                                    |
| p |                                                                    |
| m |                                                                    |
| e |                                                                    |
| n |                                                                    |
| t |                                                                    |
| a |                                                                    |
| n |                                                                    |
| d |                                                                    |
| S |                                                                    |
| o |                                                                    |
| c |                                                                    |
| i |                                                                    |
| a |                                                                    |
| l |                                                                    |
| S |                                                                    |
| k |                                                                    |
| i |                                                                    |
| l |                                                                    |
| l |                                                                    |
| s |                                                                    |
+---+--------------------------------------------------------------------+
|   | Sexual identity development                                        |
+---+--------------------------------------------------------------------+
|   | Moral development of a personal sense of what is right and wrong,  |
|   | and attempt to base behavior on their own personal morals and      |
|   | values                                                             |
+---+--------------------------------------------------------------------+
|   | Increasing dependence on and influence by peers                    |
+---+--------------------------------------------------------------------+
|   | Increasing desire and attempts at independence from parental rules |
|   |                                                                    |
|   | and influence                                                      |
+---+--------------------------------------------------------------------+
|   | Clarification of values                                            |
+---+--------------------------------------------------------------------+
|   | Dating and becoming sexually active                                |
+---+--------------------------------------------------------------------+
|   | Interests in vocational possibilities                              |
+---+--------------------------------------------------------------------+
|   | Recognizes and respects others' interests                          |
+---+--------------------------------------------------------------------+

  ------------ --------------------------------------------------------------------
  Day-to-Day   
  Living       
  Skills       

               Able to take care of all aspects of personal hygiene, may need
               reminding at times

               Can do chores around the house and yard without assistance, may need
               reminding at times

               Able to perform routine tasks around the house

               Can choose own clothes

               May begin working, earning, and saving own money

               May begin to drive

               Can take care of his own health, e. g. making doctor and dental
               appointments, and being responsible for keeping them

               Can cook and clean up on his own, more so for older adolescents
  ------------ --------------------------------------------------------------------

**Table 10**

**Normal Cognitive Development**

**Ages Eighteen + Years**

  ------------- --------------------------------------------------------------------
  Cognitive     
  Development   

                Able to express empathy

                Able to put abstract concepts into action

                Able to use complex problem-solving skills

                Thoughts and actions are more organized
  ------------- --------------------------------------------------------------------

**Table 11**

**Normal Emotional Development and Social Skills and Day-to-Day Living
Skills**

**Ages Eighteen + Years**

  ------------- --------------------------------------------------------------------
  Emotional     
  Development   
  and Social    
  Skills        

                Sexual identity is usually more stable

                Personal sense of right/wrong is more stable and is used as a basis
                for making day-to-day decisions

                Moving into long-term interpersonal relationships, marriage, and
                parenthood

                Moving into post-secondary education, e. g. college and vocational
                training, employment, and eventually retirement
  ------------- --------------------------------------------------------------------

  ------------ --------------------------------------------------------------------
  Day-to-Day   
  Living       
  Skills       

               Can manage own funds

               Can work, earn, and save money

               Can meet all of own daily needs

               Can provide adequate parenting

               Can adequately provide for more than self, e. g. spouse and children
  ------------ --------------------------------------------------------------------

> **Developmental Concerns by Age:**

The lists below are common characteristics and concerns expressed by
parents and by caregivers of children, adolescents, and adults with
FASD. A review of these deficits, shows the problems often seen in young
children do not disappear, as the person grows older. The underlying
etiology, specifically organic brain damage, remains even as the patient
matures.

**Table 12**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FASD**

**Ages One Month to Six Months**

  ------- --------------------------------------------------------------------
  One     
  Month   

          Is born with a low birth weight, needs a longer stay in the hospital

          Has problem sucking and thus, does not feed well leading to further
          concerns about the health of the baby

          Has an exaggerated startle response, becoming more aroused when
          there is sensory input, instead of learning to ignore unimportant
          information

          Is jittery well beyond the age most when most newborns overcome
          being jittery

          Does not sleep well

          Does not soothe

          Has failure to thrive

          Has heart, kidney and digestive problems
  ------- --------------------------------------------------------------------

  -------- --------------------------------------------------------------------
  Two to   
  Six      
  Months   

           Is still very "colicky" and fussy, does not soothe

           Is slow in focusing his eyes, recognizing familiar faces or
           following moving objects

           Still cannot support his head by three months

           Is unable to roll over from side to side

           Is still having failure to thrive or other health problems

           Still shows exaggerated startle response

           Has repeated ear infections

           Still has sleeping and feeding problems

           Does not respond as well to people in his world, e. g. , does not
           smile and is slow to begin to make babbling sounds

           Does not reach for objects that interest him
  -------- --------------------------------------------------------------------

> **The first month of a baby's life is a time of enormous change and
> growth. These milestones are used as marks to ensure the health of
> each child. However, it should be remembered that there are individual
> differences for ech baby. Not all babies with FASD will necessarily
> experience all of the concerns listed above, Rather, this is a list of
> what might be seen. Some babies will sleep through the night and eat
> on a regular schedule. Baby will lose weight right after birth but, in
> a short period gain it back.**
>
> **If you have questions, make sure you talk to your baby's doctor.**

**Table 13**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FASD**

> **Ages Seven Months to Two Years**

  -------- --------------------------------------------------------------------
  Seven to 
  Twelve   
  Months   

           Does not respond to visual/verbal input by caregiver, e. g. ,
           returning smiles

           Is unable to sit up by himself

           Cannot crawl

           Is not progressing towards standing and walking

           Has not learned to say simple words

           Language is not progressing towards talking

           Still has sleeping problems, is very fussy, and does not respond to
           soothing and affection from caregiver

           Does not respond to or copy simple gestures such as waving
           "Good-bye" or shaking/nodding his head

           Is still easily stimulated and hard to calm
  -------- --------------------------------------------------------------------

+---+--------------------------------------------------------------------+
| O |                                                                    |
| n |                                                                    |
| e |                                                                    |
| t |                                                                    |
| o |                                                                    |
| T |                                                                    |
| w |                                                                    |
| o |                                                                    |
| Y |                                                                    |
| e |                                                                    |
| a |                                                                    |
| r |                                                                    |
| s |                                                                    |
+---+--------------------------------------------------------------------+
|   | Muscle tone is poor                                                |
+---+--------------------------------------------------------------------+
|   | Is just beginning to crawl or make moves towards walking           |
+---+--------------------------------------------------------------------+
|   | Is walking, but not in a well developed manner                     |
+---+--------------------------------------------------------------------+
|   | Has poor balance                                                   |
+---+--------------------------------------------------------------------+
|   | Fine motor control is still not well developed, e. g. , cannot     |
|   | stack a small tower of blocks                                      |
+---+--------------------------------------------------------------------+
|   | Has hearing problems                                               |
+---+--------------------------------------------------------------------+
|   | Has difficulty remembering the names of simple or common items     |
+---+--------------------------------------------------------------------+
|   | Cannot pull a toy behind him or push a toy                         |
+---+--------------------------------------------------------------------+
|   | Language is delayed, has not yet learned to speak at least 15      |
|   | words                                                              |
+---+--------------------------------------------------------------------+
|   | Is still having trouble sleeping                                   |
+---+--------------------------------------------------------------------+
|   | Is an excessively picky eater or does not seem to recognize when   |
|   |                                                                    |
|   | he is hungry                                                       |
+---+--------------------------------------------------------------------+
|   | Does not respond to affection in some cases, but is excessively    |
|   | "touchy" to others                                                 |
+---+--------------------------------------------------------------------+
|   | Is easily distracted by unimportant sounds or items                |
+---+--------------------------------------------------------------------+
|   | Does not soothe easily                                             |
+---+--------------------------------------------------------------------+
|   | Does not like the feel of rough or even some smooth cloth on his   |
|   | skin                                                               |
+---+--------------------------------------------------------------------+
|   | Shows little stranger anxiety                                      |
+---+--------------------------------------------------------------------+

  -----------------------------------------------------------------------
  Rapid changes continue as the baby grows and develops a more noticeable
  personality. Baby's likes and dislikes become more apparent. Baby's
  brain shows rapid development during this time and as he grows, baby
  begins to deliberately use his skills.

  -----------------------------------------------------------------------

**Table 14**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FASD**

**Ages Two Years to Four Years**

  ------- --------------------------------------------------------------------
  Two to  
  Three   
  Years   

          Still is not walking or continues to have problems walking

          Balance remains poor, falls often

          Cannot run well

          Fine motor control is not well developed

          Cannot hold a pencil or draw a circle

          Cannot remember or follow simple directions or limits

          Social skills remain underdeveloped

          Imaginary play is limited

          Is more comfortable with adults or older children than age mates

          Frustrates easily

          Is not easily soothed

          Is still not able to be toilet trained

          Has chronic ear infections and respiratory problems

          Sleeping and eating patterns are still of concern

          Vision is poor

          Has little sense of danger
  ------- --------------------------------------------------------------------

  ------- --------------------------------------------------------------------
  Three   
  to Four 
  Years   

          Fine and gross motor skills are still of concern, e. g. cannot hop
          or stand on one foot, is clumsy

          Cannot catch or throw a large ball or kick one

          Cannot build a simple tower out of blocks

          Cannot string beads

          Cannot pedal a tricycle

          Language is lagging in development, e. g. does not know several
          hundred words and is still using two or three word sentences

          Is not learning to use pronouns or to understand more complex ideas

          Does not engage in imaginary play

          Does not remember, follow, or understand simple directions, rules or
          boundaries

          Is highly active and impulsive with little sense of danger

          Is easily frustrated and may be aggressive

          Throws frequent temper tantrums, sometimes with no apparent reason

          Is still not toilet trained
  ------- --------------------------------------------------------------------

**Table 15**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FARD**

**Ages Four to Five Years**

+---+--------------------------------------------------------------------+
| F |                                                                    |
| o |                                                                    |
| u |                                                                    |
| r |                                                                    |
| t |                                                                    |
| o |                                                                    |
| F |                                                                    |
| i |                                                                    |
| v |                                                                    |
| e |                                                                    |
| Y |                                                                    |
| e |                                                                    |
| a |                                                                    |
| r |                                                                    |
| s |                                                                    |
+---+--------------------------------------------------------------------+
|   | Still cannot balance on one leg, hop, or kick                      |
+---+--------------------------------------------------------------------+
|   | Is still clumsy, falls a lot                                       |
+---+--------------------------------------------------------------------+
|   | Cannot hold a pencil well or copy simple designs                   |
+---+--------------------------------------------------------------------+
|   | Cannot do simple self-care, e. g. dress himself, brush his teeth,  |
|   |                                                                    |
|   | wash/dry hands                                                     |
+---+--------------------------------------------------------------------+
|   | Has difficulty remembering/following simple directions             |
+---+--------------------------------------------------------------------+
|   | Cannot follow two or three step directions                         |
+---+--------------------------------------------------------------------+
|   | Does not understand concepts such as "over," "under," "around"     |
+---+--------------------------------------------------------------------+
|   | Cannot separate fact from fantasy                                  |
+---+--------------------------------------------------------------------+
|   | Cannot give his first and last names                               |
+---+--------------------------------------------------------------------+
|   | Language is still delayed, has a small vocabulary, does not talk   |
|   | in five to six word sentences                                      |
+---+--------------------------------------------------------------------+
|   | Language is not clear, e. g. has trouble with certain sounds       |
+---+--------------------------------------------------------------------+
|   | Does not engage well with own age peers, is more comfortable with  |
|   | younger children or adults                                         |
+---+--------------------------------------------------------------------+
|   | Does not understand concept of sharing and cooperation             |
+---+--------------------------------------------------------------------+
|   | Is easily distracted and overly active                             |
+---+--------------------------------------------------------------------+
|   | Is small                                                           |
+---+--------------------------------------------------------------------+

**Table 16**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FASD**

**Physical and Language Development**

**Ages Six to Eleven Years**

  ------------- --------------------------------------------------------------------
  Physical      
  Development   

                Is still growth deficient in height, weight and head circumference

                Fine motor control and balance are still delayed

                Can print, but cannot use cursive writing

                Gross motor control is still poor; the child may be clumsy, cannot
                ride a bicycle until ages 9-11, has trouble throwing or catching a
                ball

                Visual/motor skills are not well developed

                Most permanent teeth, with the exception of wisdom teeth, are
                present, but there are often significant orthodontic problems

                Begins to show signs of sexual maturity and the onset of puberty
  ------------- --------------------------------------------------------------------

+---+--------------------------------------------------------------------+
| L |                                                                    |
| a |                                                                    |
| n |                                                                    |
| g |                                                                    |
| u |                                                                    |
| a |                                                                    |
| g |                                                                    |
| e |                                                                    |
| D |                                                                    |
| e |                                                                    |
| v |                                                                    |
| e |                                                                    |
| l |                                                                    |
| o |                                                                    |
| p |                                                                    |
| m |                                                                    |
| e |                                                                    |
| n |                                                                    |
| t |                                                                    |
+---+--------------------------------------------------------------------+
|   | May have articulation problems requiring speech therapy            |
+---+--------------------------------------------------------------------+
|   | Is easily distracted, has problems attending and screening out     |
|   |                                                                    |
|   | irrelevant noise                                                   |
+---+--------------------------------------------------------------------+
|   | Has memory problems, cannot recall or follow more than one or      |
|   |                                                                    |
|   | two step directions                                                |
+---+--------------------------------------------------------------------+
|   | Has difficulty remembering irregular verbs and plurals, may use    |
|   |                                                                    |
|   | pronouns incorrectly                                               |
+---+--------------------------------------------------------------------+
|   | May have problems using syntactic rules appropriately              |
+---+--------------------------------------------------------------------+
|   | Can use language to form concrete ideas, but has difficulty with   |
|   |                                                                    |
|   | abstract concepts                                                  |
+---+--------------------------------------------------------------------+

**Table 17**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FARD**

**Cognitive Development, Emotional Development and Social Skills**

**Ages Six to Eleven Years**

  ------------- --------------------------------------------------------------------
  Cognitive     
  Development   

                Cannot grasp abstract concepts or formulate the same

                Has difficulty separating reality from fantasy, or past from present

                Has difficulty predicting the outcome of his or other's behavior

                Has a difficult time understanding and adhering to social rules and
                expectations

                Is able to do basic reading, spelling and math. More difficult tasks
                such as division and multiplication are beyond the child's grasp.
  ------------- --------------------------------------------------------------------

+---+--------------------------------------------------------------------+
| E |                                                                    |
| m |                                                                    |
| o |                                                                    |
| t |                                                                    |
| i |                                                                    |
| o |                                                                    |
| n |                                                                    |
| a |                                                                    |
| l |                                                                    |
| D |                                                                    |
| e |                                                                    |
| v |                                                                    |
| e |                                                                    |
| l |                                                                    |
| o |                                                                    |
| p |                                                                    |
| m |                                                                    |
| e |                                                                    |
| n |                                                                    |
| t |                                                                    |
| a |                                                                    |
| n |                                                                    |
| d |                                                                    |
| S |                                                                    |
| o |                                                                    |
| c |                                                                    |
| i |                                                                    |
| a |                                                                    |
| l |                                                                    |
| S |                                                                    |
| k |                                                                    |
| i |                                                                    |
| l |                                                                    |
| l |                                                                    |
| s |                                                                    |
+---+--------------------------------------------------------------------+
|   | Cannot self-regulate, has difficulty calming himself down, and has |
|   | a hard time working on his own for any length of time              |
+---+--------------------------------------------------------------------+
|   | Cannot inhibit their own behavior                                  |
+---+--------------------------------------------------------------------+
|   | Child remains egocentric, not recognizing or responding to other's |
|   | values, needs and feelings                                         |
+---+--------------------------------------------------------------------+
|   | Learns to deliberately manipulate adults to get his own way        |
+---+--------------------------------------------------------------------+
|   | Has limited ability to recognize and integrate personal boundaries |
+---+--------------------------------------------------------------------+
|   | Has limited ability to organize thoughts, including those related  |
|   | to feelings                                                        |
+---+--------------------------------------------------------------------+
|   | May not be able to identify or label feelings, particularly those  |
|   | related to physical arousal, e. g. excitement, fear, sexual        |
|   | arousal                                                            |
+---+--------------------------------------------------------------------+
|   | Still has temper tantrums, is easily frustrated, and shows a       |
|   | higher rate                                                        |
|   |                                                                    |
|   | of disobedience                                                    |
+---+--------------------------------------------------------------------+
|   | Cannot fully participate with peers, still has problems            |
|   | understanding the principle of cooperation                         |
+---+--------------------------------------------------------------------+
|   | Begins to demonstrate interests in hobbies, games, and begins to   |
|   | more fully understand the concept of possession and sharing        |
+---+--------------------------------------------------------------------+
|   | Is socially immature, feeling more comfortable with younger        |
|   | children                                                           |
+---+--------------------------------------------------------------------+
|   | Is impulsive without understanding the possible consequences of    |
|   |                                                                    |
|   | his actions                                                        |
+---+--------------------------------------------------------------------+

**Table 18**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FASD**

**Day-to-Day Living Skills**

**Ages Six to Eleven Years**

  ------------ --------------------------------------------------------------------
  Day-to-Day   
  Living       
  Skills       

               Can choose own clothes and fully dress self

               Can dress in anticipation of changes in the weather, if reminded

               Can take care of basic hygiene needs, but requires reminding or
               assistance, e. g. brushing teeth, taking a bath, combing hair

               Can do basic chores, e. g. make bed, clean own room, help out in the
               kitchen and in the yard, but needs reminding and assistance
  ------------ --------------------------------------------------------------------

**Table 19**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FASD**

**Physical and Cognitive Development**

**Ages Twelve to Seventeen Years**

  ------------- --------------------------------------------------------------------
  Physical      
  Development   

                Full height is reached by most adolescents. For adolescents with
                FAS/FASD, they may remain short with smaller heads, but gain weight,
                making them appear plump. This is especially true of adolescent
                girls.

                Bone growth is complete and musculature growth increases. However,
                for adolescents with FAS/FASD, there still may be poor muscle tone
                and a lack of coordination.

                Internal organs increase in size

                Menstruation begins with most girls, if it has not previously
                started

                Secondary sexual characteristics are well developed, e. g. breasts,
                hips, or penis. Body hair is present; voice deepens significantly
                for males and moderately for females.
  ------------- --------------------------------------------------------------------

+---+--------------------------------------------------------------------+
| C |                                                                    |
| o |                                                                    |
| g |                                                                    |
| n |                                                                    |
| i |                                                                    |
| t |                                                                    |
| i |                                                                    |
| v |                                                                    |
| e |                                                                    |
| D |                                                                    |
| e |                                                                    |
| v |                                                                    |
| e |                                                                    |
| l |                                                                    |
| o |                                                                    |
| p |                                                                    |
| m |                                                                    |
| e |                                                                    |
| n |                                                                    |
| t |                                                                    |
+---+--------------------------------------------------------------------+
|   | Difficulty in understanding abstract concepts and using them in    |
|   | daily life is                                                      |
|   |                                                                    |
|   | still limited                                                      |
+---+--------------------------------------------------------------------+
|   | Difficulty understanding social concepts of right and wrong        |
+---+--------------------------------------------------------------------+
|   | Self-concept/Identity: Adolescents may begin to have low           |
|   | self-esteem related to peer problems, learning problems, and an    |
|   | increasing awareness of                                            |
|   |                                                                    |
|   | his limitations                                                    |
+---+--------------------------------------------------------------------+
|   | Egocentrism: Adolescents still focus on self as the "center of the |
|   | universe," and has difficulty recognizing or responding to other's |
|   | feelings and needs in appropriate fashion                          |
+---+--------------------------------------------------------------------+
|   | Thinking process still tends to be disorganized and inconsistent   |
+---+--------------------------------------------------------------------+
|   | Difficulty linking cause and effect                                |
+---+--------------------------------------------------------------------+
|   | Problem-solving strategies still tend to be primitive              |
+---+--------------------------------------------------------------------+
|   | Problems distinguishing fact from fantasy                          |
+---+--------------------------------------------------------------------+

**Table 20**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FASD**

**Emotional Development and Social Skills and Day-to-Day Living Skills**

**Ages Twelve to Seventeen Years**

  ------------- --------------------------------------------------------------------
  Emotional     
  Development   
  and Social    
  Skills        

                Sexual identity development

                Moral development is delayed, difficulty understanding social
                concepts of right and wrong

                Increasing dependence on and influence of peers

                Increasing desire and attempt at independence from parental rules
                and influence without understanding the consequences of his actions

                Desiring to date, but often making poor choices

                Becoming sexually active without a full awareness and ability to
                protect self from pregnancy or sexually transmitted diseases

                Unrealistic sense of skills and vocational possibilities

                Difficulty recognizing and respecting other's interests
  ------------- --------------------------------------------------------------------

  ------------ --------------------------------------------------------------------
  Day-to-Day   
  Living       
  Skills       

               Able to take care of some aspects of personal hygiene, often needs
               reminding and assistance

               Can do chores around the house and yard with assistance and
               reminders

               Able to perform routine tasks around the house with reminding and
               assistance

               Can choose own clothes

               May begin working, earning, and saving money

               Driving is a desire, but adolescents often lack judgment, adequate
               reflexes, or ability to recognize potentially dangerous situations

               Needs help taking care of own health, e. g. making doctor and dental
               appointments

               Can do some cooking and cleaning on his own with reminding and
               assistance
  ------------ --------------------------------------------------------------------

**Table 21**

**Challenging Behaviors and Developmental Delays Associated with
FAS/FASD**

**Cognitive and Emotional Development and Social Skills**

**Ages Eighteen + Years**

  ------------- --------------------------------------------------------------------
  Cognitive     
  Development   

                May still have problems identifying and responding to one's own
                feelings and needs, and those of others

                Abstracting abilities are limited

                Problem-solving skills are limited

                Thoughts and actions are still disorganized and immature
  ------------- --------------------------------------------------------------------

  ------------- --------------------------------------------------------------------
  Emotional     
  Development   
  and Social    
  Skills        

                Sexual behavior may be impulsive and without thought to possible
                consequences

                Adults often remain at higher risk for sexual exploitation or abuse

                Relationships may remain short-term and with many problems

                Behaviors may be similar to those of younger people and be seen as
                immature, intrusive and inappropriate
  ------------- --------------------------------------------------------------------

**Interventions by Age:**

**\
**The lists of interventions below, are examples of actions that parents
and caregivers have used to aid their children in reaching their
potential. These interventions have implications for professionals as
well as caregivers. The rest of this manual will expand on the
interventions below, as well as provide additional suggestions where
professionals may help in developing programs for children, adolescents,
and adults with FASD.

The following information was first published in [A Practical Native
Americal Guide for Caregivers of Children, Adolescents, and Adults with
Fetal Alcohol Syndrome and Fetal Alcohol Related Conditions]{.underline}
by Robin A. LaDue, PhD in 2000 and in Psychosocial Needs Associated with
Fetal Alcohol Syndrome: Practical Guidelines for Parents and Caregivers
by Robin A LaDue, PhD in 1993.[^35]^,^[^36]

**Figure 2**

**Recommendations and Practical Suggestions**

**Ages Birth to Five Years**

**Early identification of at-risk children**

-   Important for implementing needed services.

-   Help maximize the potential outcome for the child.

-   Important for identifying women and families at-risk.

-   Help in providing needed services for families at-risk and
    maximizing the chances for family to remain intact.

-   Careful monitoring of physical development and health.

-   Placement of child in preschool.

-   Help the child to begin appropriate socialization, communication
    skills and behavior.

-   Provide respite care for parents and caretakers.

**Safe, stable, structured home**

-   Help child learn appropriate behavior.

-   Help support the parents and caretakers, e. g. with sobriety,
    accessing social and health services.

-   Setting appropriate goals and expectations.

-   Help the parents and caretakers to better understand the child's
    methods of communication.

**Adapting the environment to the child**

-   Low to moderate level of stimulation.

-   Simple, concrete directions.

-   Consistent, limited rules.

-   Assignment of case manager to coordinate services for the child and
    family.

**Intervention with and education of birth, foster, and adoptive
parents**

-   Referral for alcohol treatment, if appropriate.

-   Referral for subsidized adoption.

-   Referral for parenting skills, if appropriate.

-   Education regarding normal development.

-   Education regarding possible health concerns and developmental
    delays.

**Figure 3**

**Recommendations and Practical Suggestions**

**Ages Six Years to Eleven Years**

**Continued monitoring of health issues**

-   Safe, stable, structured home or residential placement

-   Help caretakers/teachers establish realistic goals and expectations

-   Help the child make healthy choices appropriate to their emotional
    and cognitive level

-   Use of clear, concrete, predictable, and immediate consequences

**Simple, clear and concrete directions of daily chores and activities
along with positive consequences for appropriate behavior, listed in
writing**

-   Structuring of leisure time

-   Participation in organized sports, e. g. Special Olympics

-   Participation in clubs for handicapped children

-   Psychological/academic/adaptive evaluations on a regular basis

-   Education of parents and caretakers regarding age-appropriate sexual
    development

-   Case manager's role expands to include schools, mental and physical
    health providers, and social service agency personnel

-   Documentation of health impairments and deficits in adaptive
    behavior to aid in acquiring SSI and DD funding

**Respite care for parents and caretakers**

-   Continued support for parent's sobriety, if needed

-   Appropriate educational placement

-   Activity-based curriculum

-   Focus on communication skills

-   Focus on appropriate behavior

-   Basic academic skills embedded within functional skills

**Figure 4**

**Recommendations and Practical Suggestions**

**Ages Twelve Years to Seventeen Years**

-   Change focus from academic skills to vocational and daily living
    skills.

-   Continued structuring and monitoring of leisure time and activities.

-   Involvement in structured social and sports group activities.

-   Anticipation of transition/crisis situations along with appropriate
    planning and early interventions.

-   Continued listing of daily chores with increasing responsibility.

-   Respite care for families.

-   Caretakers support group.

-   Help the patient to make healthy choices and to build on their
    existing skills.

-   Education of parents, caretakers, and patients regarding sexual
    development, birth control options, and protection against sexually
    transmitted deceases (STDs).

-   Education of parents, caretakers, and patients to help protect
    against sexual exploitation.

-   Implement planning for future residential placement, financial
    needs, and vocational/educational training.

**Figure 5**

**Recommendations and Practical Suggestions**

**Ages Eighteen + Years**

-   Guardianship for funds.

-   Subsidized residential placements, including special monies for
    birth and adoptive parents to help defray costs for special needs.

-   "Homebuilders" support to help the patient live as independently as
    possible and to help in teaching parenting skills, if the patient
    has children.

-   Specialized vocational training or job placements.

-   Medical coupons and care.

-   Case manager to help patients and families access services.

-   Drug and alcohol treatment for patient, if needed.

-   Act as a liaison with court and other legal concerns, if necessary.

-   Patient advocates to ensure the recommendations are acknowledged and
    implemented.

-   Acknowledgement of the patient's limitations, strengths and skills.

-   Acceptance of the patient's "world".

**Section II**

**Physical Health Issues and Needs**

######### Jerilynn, at the age of six months, was diagnosed with a ventricular septal defect. Surgery was performed on her and she was returned to the care of her birth mother. However, due to her mother's alcoholism, Jerilynn did not get the follow-up medical care she needed after her surgery. Jerilynn was temporarily placed in a special foster home. After three months, when her post surgical wounds had healed, she was again returned to the care of her mother. 

*Jerilynn remained small and thin. She was a fussy eater and often
refused food. By age two, she was showing significant cognitive and
developmental delays. At this time, she was removed from the care of her
birth mother and placed in a therapeutic, relative foster home until her
adoption at age 3. Jerilynn had multiple dental caries, chronic otitis
media, and remained thin.*

*She was diagnosed with FAS at this age and at the same time tubes were
placed in her ears because of otitis media. Her weight stabilized, but
she never achieved average height. Once she was eight, her health
concerns became less of an issue. However, she still continued to have
ear infections.*

*As Jerilynn grew older, she became sexually active. Over the course of
time, she had three episodes of sexually transmitted diseases and, was
pregnant by the age of 17. She refused birth control on several
occasions, repeating her mother's pattern of multiple sexual partners
and pregnancies, resulting in five live births.*

This section is focused on the health needs of the child, adolescent,
and adult with FASD and ways to address these needs. However, due to the
wide spectrum of effects and lack of adequate information many
physicians and other health care professionals have about FASD, many
babies, children, adolescents, and adults with FASD may never be
identified and diagnosed. This in and of itself is a risk factor for
children with prenatal alcohol exposure. Alcohol is the most widely used
teratogen among women of child-bearing age.

It is crucial that prenatal screening for alcohol use be carried out as
much as possible to identify at-risk mothers and babies. If the pregnant
mother has not previously been screened, it is important that the
hospital do so at the time of delivery. Examples of screening tools for
pregnant women are listed in the Appendices and References.

Even though many patients with FASD have limited cognitive abilities,
they should still be involved in the decisions that affect their lives.
Consent forms to allow release of information should always be signed.
If possible, summations of treatment, such as those contained in the
matrices presented in this manual, should be provided to other
professionals giving care to the same patient. Space does not allow for
a full discussion of health factors associated with women and
alcoholism. However, in the Family and Psychosocial sections of this
manual, many of these issues and concerns are addressed.

One last caution: all providers should be aware of their pregnant
patient's possibility of being affected herself by prenatal alcohol
exposure. If possible, FAS/FASD screening should be part of an
assessment as the cognitive defects associated with this disorder can
well drive the interventions that may be most appropriate. On-going
screenings and assessments should be done throughout the pregnancy, not
only as a preventative measure, but also as a means of support and
promoting change.[^37]^,^[^38]

People are not born into this world as unattached entities. Each child
born with FASD is born to a woman at risk for premature morbidity and a
host of other alcohol-related health problems.[^39]^,^[^40] A woman deep
in her alcoholism may not provide a safe home for her child. This can
result in neglect, abuse, poor bonding, a lack of adequate nutrition,
and ultimately, the child being removed from parental care. An
artificial division is made between health problems directly caused by
prenatal alcohol exposure versus secondary health concerns such as the
ones listed above. In reality, both must be addressed to ensure healthy
functioning.

**Health Concerns**

The health issues and needs of children, adolescents, and adults with
FASD, range from otitis media to heart conditions. They can be as simple
as clinadactyly (crooked fingers) and as complicated as ventricular
septal defects. This section will discuss the physical health concerns
often seen in children, adolescents, and adults with FASD. Not every
person with FASD will have every problem and not every problem will
necessarily be discussed in this section. Suggested interventions and
programs that may help address these concerns will be contained in the
latter portion of this section.

**Difficulties and Concerns**

*"I got good prenatal care. I saw my OB for the first time when I
delivered my baby. "*

*- 37-year-old mother of three with FAS describing*

*her prenatal care*

**Ages Birth to Five Years:**

Many women who are involved with alcohol either do not get adequate
prenatal care or any prenatal care at all.[^41] Nutrition may not be
appropriate and there may be a higher risk of polysubstance abuse. These
factors put babies at higher risk for problems that must be addressed by
hospital and other health care staff. Failure to receive prenatal care
may mean that the newborn does not get screened for problems associated
with FASD. They may also be released to their mother's care and into a
less than healthy environment. Labor and delivery staff should have some
means of screening for alcohol abuse in a non-threatening and supportive
manner.[^42] It might also be a good idea for a hospital to provide a
patient advocate to ensure that each new mother receives follow-up care
and that the child and mother go home to a safe environment.

Alcohol is a teratogen, a substance that can cause birth defects. There
are specific effects that occur based on the point of pregnancy at which
the alcohol is consumed. The physical defects that are associated with
prenatal alcohol exposure result from the impact of alcohol on the
developing fetus. There are specific effects by trimester (see Figure
6). In the first trimester, most of the major physical malformations
associated with the FAS physotype occur. After birth, these appear as
the smaller eyes, long, smooth philtrum (the area between the nose and
upper lip), and thin upper lip that make up the classic face of
FAS.[^43]^,^[^44]^,^[^45]^,^[^46]^,^[^47] A woman need not drink every
day for the child to have the facial abnormalities seen in FAS. A woman
who is binge drinking may consume alcohol during these developmental
milestones and have a child born with the same features as a child who
was exposed to prenatal alcohol exposure every day.[^48]

**Figure 6**

**Development During Gestation**

![](media/image14.wmf){width="6.235416666666667in"
height="2.8930555555555557in"}

A woman who begins drinking or continues drinking during the second
trimester runs an increased risk of spontaneous abortion or miscarriage.
Women who begin drinking in the third trimester or drink all through
their pregnancies run a risk of a lower birth weight baby and increased
rates of still-births.[^49]^,^[^50] A lower weight baby is often
considered a higher risk baby. These babies are not necessarily
premature, although that is also a possibility.

The baby's brain is forming across the entire time of pregnancy and thus
is vulnerable to damage regardless of the point in pregnancy that
drinking occurs. It is due to the specific effects by trimester that
many children may have brain damage and behavioral and learning
problems, even in the absence of abnormal physical features.[^51]

The brain damage just mentioned is related to many of the health
problems seen in young children with FASD. For example, many babies
prenatally exposed to alcohol have a weak suck, making it difficult for
them to feed. If they have a lower weight at birth and do not feed well,
this increases the risk of possible problems and failure to
thrive.[^52],[^53] Other manifestations of brain damage related to
prenatal alcohol exposure may include microcephaly (small head), lower
intellectual abilities, poor tandem gait, poor hand-eye coordination,
neurosensory hearing loss, clumsiness, and structural brain anomalies.
Issues related to learning and behavior will be discussed in greater
detail throughout this manual.

Some of the direct health concerns associated with prenatal alcohol
exposure are:

-   Low birth weight

-   Shortness of length

-   Smaller head circumference

-   Facial dysmorphology

-   Lower IQ scores

-   Behavior problems

-   Failure to thrive

-   Sleep disruptions

-   Disorders of the palate

-   Renal and unogenital defects

-   Skeletal defects, e. g. , hip dislocations

Babies born with FASD commonly have an exaggerated startle
response.[^54] They have difficulty screening out irrelevant
information, making it difficult to feed or sleep if there is any
"extraneous" light or sound. They may not like being held and may become
rigid when picked up. This may make it difficult to bond with babies
with FASD and, in other cases, it may be difficult to feed them.

Special care needs infants should be provided a quiet place to feed.
Feedings should be held, whether in the hospital or at home, in the same
place and time each day. Routine and predictability is the type of
structure that will be needed for people with FASD across the lifespan.
Helping the parent understand these concerns and set up routines to
facilitate feeding and sleeping are important educational interventions
health professionals can provide.[^55] For more information on specific
interventions that can aid parents in these areas, please see the [A
Practical Native American Guide for Caregivers of Children, Adolescents,
and Adults with Fetal Alcohol Syndrome and Alcohol Related
Conditions.]{.underline}[^56]

Children with FASD often have distortions in their sinuses and
Eustachian tubes. These distortions can lead to increased rates of
otitis media and hearing loss. In addition, higher rates of neurosensory
hearing losses are associated with FASD.[^57] It is important that a
child known or suspected of being prenatally alcohol exposed receive
hearing screening as early as possible. If the parent is not capable of
acquiring these services, a public health nurse should be assigned to
the family and ensure the baby or child is screened.

Prenatal alcohol exposure can cause strabismus (crossed eyes) and ptosis
(drooping eyelid) affecting the baby's or vision. Myopia (poor eyesight)
is also a common occurrence. All of these factors need to be evaluated
and treated. In some cases, the strabismus and ptosis may be corrected
through surgery. Myopia may be addressed through eye glasses. As with
other health issues, if the parents are unable to meet the needs of
their baby, a social worker, public health nurse, or case aide should
take responsibility to ensure such care is received.

Cardiac concerns such as a heart murmur or ventricular/atrial septal
defects are sometimes seen in babies with prenatal alcohol
exposure.[^58] While some of these problems may spontaneously resolve,
others will require surgery. If the parent is drinking and not able to
provide adequate care for a baby with special health needs, it will be
crucial that a safe residential placement is provided until or if it is
appropriate for the baby to be returned to the parent's care.

Another problem noted children with FASD is clumsiness, poor fine motor
control, and gait problems. Many babies with FASD do not do "cross-body"
crawling. This is where a physical or occupational therapist can be
useful in developing programs to enhance motor coordination and the
total development of the baby. There are programs such as "brain gym"
which teach cross body motion. Cross-body training can be taught to the
parent or caregiver. It often consists of helping the child move the
opposing parts of the body, e. g. right-arm-left-leg. There is often a
thinning of the corpus callosum in children with prenatal exposure.[^59]
Such exercises encourage brain connection development and motor
coordination.[^60]

*"In working with clients with FASD, my job is like picking one role
from column A and one from columns B and C. It may not be the same from
day to day or person to person. Flexibility is the key flexibility and
humor. "*

> *- A case manager describing his job duties and role when working with
> substance abusing woman in an early intervention program.*

In addition to the examples listed above, the role of the professional
in addressing health concerns from the prenatal period to age five is
often to:

-   Develop effective strategies.

```{=html}
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```
-   Aid in ensuring the mother is screened for prenatal alcohol and drug
    use.[^61]

-   Facilitate the mother's entry into drug and alcohol treatment, if
    appropriate

-   Aid the family in accessing needed social and health services.

-   Serve as a liaison between the health care system and the family.

-   Aid the mother in acquiring long-term birth control to ensure she
    does not have another child exposed to alcohol or other substances.

-   Educate medical staff as to the needs of the mother and child. For
    example, many babies born with FASD do not feed well. If the
    hospital can set up a quiet room where the mother, father, or
    caregiver can concentrate only on feeding the child and bonding with
    the child, this may facilitate a closer bond and healthier
    parent/child relationship.

-   Aid in establishing a team, such as the one described earlier, to
    provide support, follow-up, and long-term care for the child, the
    mother, and the family.

-   Ensure that the child receives ongoing health care with a
    pediatrician.

-   Ensure public health services are established for the family. This
    can aid in the child getting needed immunizations, well child care,
    and provide support for the family.

-   Provide public health nursing care and other in-home services to
    ensure the home where the baby is going is appropriate and safe.

-   Make contact with social services if it is not safe for the child to
    return home with the mother.

Any professional working in this area must be aware of the vulnerability
and fear that many women have when the child is diagnosed with FASD. In
some states, acknowledgement of alcohol during pregnancy may result in
the baby being removed from the mother's care.[^62] While the safety of
the child cannot be compromised, any professional working with an
at-risk mother can serve as an advocate to facilitate treatment and as a
liaison with social services to minimize the chance of permanent removal
of the child.[^63]

Studies have demonstrated that the prenatal and perinatal periods are
crucial time for intervention with substance abusing women.[^64] Early
identification and interventions have also been shown to lead to more
positive outcomes.[^65] An alert professional who recognizes an at-risk
child and mother can be an asset in preventing the birth of another
affected child. Support can aid the mother both in her sobriety and in
keeping the family together. Specific resources that may be of help are
listed in Appendix 7 at the back of this manual.

**Ages Six to Eleven Years:**

Many of the problems seen in younger children such as failure to thrive
and heart problems have either been resolved or surgically corrected by
the time children reach age six. However, other health concerns take
their place. These concerns are more related to gait problems, slowness
in development, and the consequences of neglect or abuse. The
psychosocial aspects of the latter will be covered in Section III. Other
areas of health concern include dental, vision, and hearing care. Vision
and hearing become particularly important as the child enters school and
moves out into the world.

Many children are identified as being at-risk of having FASD when they
enter the foster care or adoptive care system. Many children who have
FASD spend their early years in chaotic, alcoholic homes. Physical abuse
and neglect or poor nutrition may have been a part of these children's
lives. Another area of risk is the fearlessness shown by many children
with FASD. Jumping off roofs and breaking bones are common concerns
expressed by the parents and caregivers of children with FASD.[^66] Not
being aware of every day risks, such as crossing the street without
looking, not wearing a coat in the cold, and not choosing safe friends
are often concerns seen in children this age and beyond.

If the child remains with the substance abusing parent who cannot
adequately provide for their care, it may be necessary for the school to
ensure the child gets vision and dental care and at least one to two
nutritious meals a day. School personnel may also need to take on the
responsibility of notifying social services if there are safety concerns
in the home. Being willing to exercise these responsibilities is part of
serving on the team of a child with FASD.

In clinical samples, many children with FASD are out of their mother's
care prior to the age of five, due to maternal health concerns and
substance abuse. Women who produce children with FASD have a
significantly premature morbidity (death) rate.[^67] While it is hoped
that foster and adoptive homes are safe places, this is not always the
case. It is crucial that the team members establish a safe residential
placement for the child. This is not just for the physical safety of the
child, but also to reduce or address the psychosocial concerns that are
often a result of multiple placements, trauma, and the loss of the birth
family.[^68]

*"We have motion detectors, blinking alarms on the doors and windows,
buzzing alarms on the outside doors, and little "yippee" dogs! This is
all to make sure our sons are safe. The dogs are to keep them company if
they, by chance, get out the front door. The dogs make lots of racket
and herd them around, making them easy to track."*

*- A weary mother of three-year-old twin boys*

*with FAS on her "safety system."*

While the critical health needs of otitis media, heart defects, and
failure to thrive have passed by the time the child is in the latency
(6-11 years; before puberty) period, there are still safety needs as
listed above. The impulsivity and lack of judgment that began to be
apparent in younger children often become more apparent in this time
period. It is important that the family providing care for the older
child with FASD also provide constant supervision and monitoring to
ensure their safety. Resources for structuring the child's free time can
include Special Olympics, clubs for children with special needs, and
other community programs.

A health issue that is not formally documented but for which parents
have provided anecdotal information, includes food and dye allergies.
Parents have noted peanut and sugar allergies as the main culprits.[^69]
They report that consumption of these foods increases hyperactivity.
However, as noted, there are no formal studies to verify, one way or the
other, the veracity of this report. Such concerns should be discussed
with the child's pediatrician prior to implementing any type of health,
medical, or special dietary program.

Sleep problems[^70] and "finicky" eating are reported as common problems
in this age group. Some of this appears related to sensitivity to taste
and texture many children with FASD seem to have. Sleeping problems can
be exacerbated by a lack of routine or quiet enough place to sleep. Some
children complain about the feel of the sheets or of clothes on their
body. Tactile sensitivity is a common concern expressed by children and
adolescents with FASD. It may be subsequent to the neurological changes
seen in children with FASD that make it difficult for them, from birth,
to screen out irrelevant stimuli.[^71]

In addition to the examples listed above, the role of the professional
in addressing health concerns is similar to that for younger children.

-   Aid in identifying and addressing alcohol use by the mother.

-   Aid in ensuring the mother is screened for prenatal alcohol and drug
    use.

-   Facilitate the parent's entry into drug and alcohol treatment, if
    appropriate.

-   Aid the family in accessing needed social health services.

-   Serve as a liaison between the health care system and the family.

-   Aid the mother in acquiring long-term birth control to ensure she
    does not have another child exposed to alcohol or other substances.

-   Set the child up for FASD diagnostic screening if this has not
    already occurred.

-   Aid in establishing a team, such as the ones described earlier, to
    provide support, follow-up, and long-term care for the child, the
    mother, and the family.

-   Ensure that the child receives ongoing health care from a family
    physician or a nurse practitioner. This is particularly true for
    vision, hearing, and speech screening as the child enters school.

-   Ensure public health services are established for the family. These
    can aid in the child getting needed immunizations, well child care,
    and provide support for the family.

-   Provide public health nursing care and other in-home services to
    ensure the house where the child resides is safe and appropriate.

-   Make contact with social services if it is not safe for the child to
    remain home with the mother.

-   Monitor the safety of any foster/adoptive or group home where the
    child resides.

-   Educate the family, in whatever form necessary, as to the health
    needs and concerns of the child with FASD.

It is clear from the list above, that there is a carry over of health
issues from early childhood through the latency period and on into
adolescence and adulthood.

**Ages Twelve to Seventeen Years:**

*"I don't [plan]{.underline} on screwing up. It just somehow seems to
happen a lot!"*

*- a 13-year-old girl with FASD*

As the child moves from latency and childhood into adolescence, sexual
safety becomes a primary concern. Sexual health includes the person with
FASD being able to make healthy choices about whether to be sexually
active, whom to be active with, and protecting themselves from sexually
transmitted diseases. One of the common results of the brain damage
associated with FASD is a lack of connection between cause and effect
and the understanding of long-term possible consequences. These deficits
are particularly dangerous when coupled with making decisions about
sexual behavior.

Children and adolescents with FASD are often impulsive and easily led.
Without proper supervision and support, they are especially vulnerable
to being led into possibly dangerous situations. Adolescents may not be
open to the structure and constant supervision needed to ensure their
safety. The conflict between needing and accepting structure is one of
the most common frustrations expressed by both the adolescent with FASD
and the caregiver.[^72]

*"Oh Dad! We only had sex a few times. What's the big deal? I
[know]{.underline} all my girlfriend's past boyfriends. None of them
look sick. If they aren't sick, why should we worry about using a
condom?*

*-15 year old youth with FAS on why he chooses to*

*not practice safe sex*

Major concerns that arise as the person with FASD grows older are sexual
and physical safety. These concerns become more apparent as the
adolescent with FASD moves into adulthood. Contraception, such as
condoms, birth control pills, and diaphragms may simply be too
complicated and take too much planning for the person with FASD to use.
Depo-Provera is a long-term solution to contraception; one shot every
three months. Not every woman with FASD can use Depo-Provera or tolerate
the side effects. To acquire adequate contraception, however, young
women with FASD have to:

-   Find a physician/health care provider to provide care

-   Remember to get the shot if on Depo-Provera or obtain birth control
    pills, diaphragm, or condom, or foam

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-   Secure a ride to the clinic

-   Remember to use protection against sexually transmitted diseases as
    well as pregnancy

-   Find a means to pay for services received

These expectations may be unrealistic without someone to support the
young woman with FASD and ensure she is able to access these services.
In this situation, the role of the professional is that of the advocate
and in some cases the transporter. This requires a level of flexibility
with which many professionals are not comfortable.

Sexual and safety issues for adolescents with FAS also include the risk
of sexual and social exploitation. While young women run the additional
risk of pregnancy, both sexes are vulnerable to exploitation. Young
males with FASD are at greater risk for being involved in gangs and
antisocial activities without understanding the possible consequences of
their actions. One young man with FAS was constantly trying to "prove
his colors" with the gangs in the neighborhood. He was beaten up on
several occasions for antagonizing other youths but never seemed to
learn from his past mistakes.

This type of problem may not be seen as a typical health issue. However,
physical safety and well-being are serious health concerns for children,
adolescents, and adults with FAS. Thus, poor peer relations and
involvement with dangerous activities do need to be considered health
concerns as well as other psychosocial issues. The prevention and
interventions intended to reduce these risk factors are discussed in the
psychosocial section later in this manual.

Many people with FASD have dental and orthodontia problems. Dental
problems not attended to could lead to abscesses, severe pain, systemic
infections, and lost teeth. These issues do need to be addressed, but
the family in whatever form, may not have the emotional or financial
resources to do so. If the adolescent has remained within the biologic
family where either or both parent has continued to use substances,
there might not be enough financial and parenting resources to ensure
that adequate dental care is provided.

In foster care, there may be constraints due to budget limitations,
frequently changed placements and frequently changing caseworkers. A
team management approach with one case manager overseeing the care of
the child is crucial in ensuring adequate care. One case manager that
stays with the child makes it easier to track what services the child
has received and when. Other services such as vision and hearing care
can be managed as well.

The role of the professional at this point becomes one of:

-   Advocacy to ensure that the client receives needed medical services,
    regardless of insurance status, e. g. accessing local Planned
    Parenthood or public health clinics

-   Providing adequate and concrete information about healthy sexual
    choices and ways of protecting one's self

-   Continuing to aid in accessing dental, visual, and general medical
    care

-   Educating the birth, foster, or adoptive parent about the
    adolescent's sexual needs and sexual health

-   Ensuring the adolescent is residing in a safe place

-   Working with the family to reduce the risk of substance abuse

-   Helping the family access substance abuse and mental health
    treatment, if needed for either the parent or the child. It may seem
    surprising to some that a child might need substance abuse treatment
    at this age. Among many American Indian and Alaska Native families,
    however, substance use and abuse can begin as early as nine years of
    age or even younger[^73]

-   Helping the family provide appropriate structure on a 24/7 basis to
    ensure the safety of the patients and the entire community

**Ages Eighteen Years and Up:**

The health issues in adults with FASD are similar to those seen in late
adolescence. Sexual safety and health, along with contraception, are at
the forefront of safety for young adults. However, there are other
issues that come into play as the person with FASD moves into
adulthood.[^74] Continued dental care, vision care, preventive health
maintenance, and medical care for normal illnesses, e. g. care for
hypertension or arthritis and other health problems needs to be
addressed.

People with FASD rarely have third party insurance or jobs that provide
benefits to cover these needs. They may be out of their previous
residential placement(s) and out of the state foster care system with
the expectation that they will be providing for their own physical,
emotional, residential, vocational, and health care. Adolescents and
adults with FASD may also have their own children to care for.

Children born to women and men with FASD do not necessarily have FASD.
This can occur only if the mother herself had been drinking during her
pregnancy. However, as many women with FASD have difficulties meeting
their own needs, it is often unrealistic to expect she will necessarily
be able to meet the needs of her children. If a woman with FAS has
children with disabilities, it is likely to put even more pressure on
her, increasing the risk of the mother not being able to retain custody
of her children. Some women may not disclose alcohol and other substance
abuse during pregnancy for fear of losing their children.[^75] Some
states have enacted legislation that allows women to disclose and seek
treatment without having their children removed from their care solely
on the basis of their substance use.

People with FASD over the age of eighteen, due to the apparently
increased risk of sexual and social exploitation and failure to exercise
safe sexual practices than other peers their age, may be at greater risk
for sexually transmitted diseases. During pregnancy, they may not
receive adequate or any prenatal care. Services to address these
concerns may be difficult for people with FASD to access. Medical
services may come through emergency rooms or at the time of delivery of
any children. This is a costly method of care. It may not be preventive
care and may provide less continuity of care.

*"My older brother, he was adopted. He has FAS and Alzheimer's disease.
He's 55 years old. I cared for him in his 20's after my parents died.
Now, I am taking care of him again."*

-   *Sister of a man with FAS who has assumed full responsibility for
    her older brother*

All people are at risk for increased health issues as they age. This is
true for people with FASD, too. But, as with many other issues, the
person with FASD may not recognize their problems or services that might
be needed to address them. They may not know how to access services or
even be able to state to any health care provider what their needs might
be.

For health care professionals working with people with FASD over the age
of 18, their role now becomes:

-   Identifying what health risks might be more prevalent as the person
    ages.

-   Recognizing and aiding in accessing needed services.

-   Being an advocate or informant in working with other health care
    providers.

-   Providing direct services in a manner that allows the patient with
    FASD to understand information, identify options for services,
    participate in prevention activities, and receive regular care
    rather than services on an emergency basis.

-   Aiding the parent in acquiring in proactive, long-term family
    planning.

In recent times, the need for sex education within a curriculum of
social and decision-making skills has been advanced. Different programs
have used food vouchers or recreational gift certificates as incentives
for young women to participate in contraceptive programs. [^76] It is
not known if similar attempts have been made with young women with
FAS/FASD.

However, given the serious need for such measures with this population,
it certainly appears worth the effort to design and implement such
programs. These could be done through public health agencies or child
welfare services. Strong social reinforcement for the use of
contraception might also be useful for this population.

**General Strategies for Health Care Professionals Working with Patients
with FASD:**

In summary, there are health concerns that may directly result from
prenatal alcohol exposure. [^77] The period of early childhood,
particularly the first year of life, is often one of increased health
risks resulting from the neurobehavioral effects of prenatal alcohol
exposure. In later years, health concerns are the same as those that are
more commonly seen in the general population. However, the patient with
FASD may have more difficulty accessing needed services or making
appropriate decisions regarding their health.

Many patients with FASD may not have the skills to be proactive in their
own care. A routine health screening facilitated by caseworkers, nurses,
and primary care physicians should be held at least once a year. Such
screening can also serve as a positive means of preventing and
facilitating early health care interventions.

Due to memory problems and other difficulties with organization, people
with FASD may not follow medication regimens as needed. Depending on the
health problem, this can be fatal. For example, a person with FASD with
diabetes will need to be able to check their blood sugar and prepare an
insulin injection on their own. This is a complicated process with which
many nonaffected patients struggle. In such a situation as this, the
health care provider may need to aid in developing a team

![](media/image15.wmf){width="5.504861111111111in"
height="3.923611111111111in"}

including a public health nurse or in-home health care aides to ensure
medication regimens are followed. Directions need to be simple and put
in writing or used with visual cues, sometimes in simpler terms than
many health care professionals commonly use. Below is a summary of
interventions and approaches that health professionals in the field have
found useful in working with patients with FASD:

-   Health care providers should be aware of any limitations and special
    needs the parents might have that can impact their ability to
    provide adequate care to their child with FAS/FASD.

-   Obstetricians and gynecologists should screen women patients of
    childbearing years for substance abuse and provide simple but
    comprehensive information on the possible effects of substance use
    during pregnancy.[^78]

-   Health care providers should be aware of health related resources
    available in their community. If possible, this information should
    be provided in written and visual formats to their clients.

-   Hospitals should routinely screen at delivery and birth for women
    using and abusing alcohol and other substances. If the screening is
    positive, hospitals should work to:

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-   Ensure an early diagnostic evaluation is done

-   Ensure Child Protective Services are involved, if needed

-   Aid the parent(s) in acquiring needed services

-   Ensure the child goes to a safe home

-   Teach the parent effective feeding and basic child care

-   Make a plan for parental and child follow-up care with appropriate
    referrals to public health nursing, substance abuse programs,
    parenting classes, and family preservation services

Addressing health care needs across the lifespan for patients with FASD
requires professionals to recognize that parents and caregivers,
regardless of the home and family structure, will need education about
the special health needs of their child. For adolescents and adults,
sexual health, contraception, and acquiring basic health care are
crucial. Simple, concrete information along with professionals providing
support and follow-up is critical for all families and patients with
FASD.

![](media/image16.wmf){width="4.388888888888889in"
height="4.1819444444444445in"}

It is important to remember that physical health issues do not exist in
a vacuum. While, as noted, there are primary health issues from prenatal
alcohol exposure, there are also secondary health concerns. As detailed
in the following section, secondary disabilities in the form of
psychosocial needs are often debilitating for patients with FASD. Many,
if not most, patients with FASD may not have the skills to be advocates
for their own care. Therefore, professionals working in this area will
need to be as flexible and proactive as possible.

**Integration of Traditional Native Beliefs, Values, and Practices:**

The medical model of health is the prevailing foundation for health care
services in the Western world. In recent times, however, there have been
efforts to approach illness and health from a more integrated physical,
spiritual, and emotional view. Traditional Native beliefs on health
often cite humans being "out of balance" as a cause of illness. The use
of alcohol, along with the loss of land, language, culture, and family
certainly can cause emotional, physical, and spiritual imbalance.

Health care in traditional Native communities was commonly provided by
healers (shaman).[^79] If a special ceremony was needed, it was often
done in the context of the community. Medications were obtained from
plants that are often used today.[^80]

Today, health care in Native communities is most commonly provided
through the Indian Health Service (IHS) or clinics contracted by tribes
through Indian Health Service. Accessibility of services can be of
concern, however, due to budget constraints, limited funding, and long
distances from health care facilities. There may be few health care
providers who can adequately diagnose FASD. [^81]^,^[^82]

![](media/image17.wmf){width="4.661111111111111in" height="3.6625in"}

While all of these factors can inhibit adequate identification and
diagnosis and increase the level of concern for at-risk children,
mothers, and fathers, there are positive aspects of Native life that can
be of help in providing health care to children, adolescents, and adults
in Native communities. Traditional healers often hold an immense store
of wisdom and knowledge. Ceremonies done with the extended family and
community members can provide a sense of worth for the person affected
with FASD. Chemical dependency programs that are based on traditions may
serve as examples for positive structure, prevention and treatment for
families.[^83] Community health aides and community health
representatives, funded through Indian Health Services and contracted
health care programs, can aid in transportation and explaining services
and health care programs to patients who might be impaired due to FASD.

Inclusion of traditional Native healing practices into Western style
health care programs is happening on a more frequent basis than in the
past.[^84] Regardless of where the person with FASD resides, it is
crucial that health care services are accessible, affordable, and
appropriate for the population to be served.

**Health Care Needs and Service Matrix:**

At the start of Section I, a case study was detailed. Additional
information was provided at the beginning of this section. Below is the
health care matrix for Jerilynn across the lifespan. Please note the
changes as Jerilynn grows older. With each section, a portion of the
matrix will be completed with the full series of matrices detailed by
the end of the manual.

**Figure 7**

**Matrix I:**

**Health Care Concerns for Jerilynn**

  ----------------------------------- -----------------------------------
  Ages 0-5                            Low birth weight, failure to
                                      thrive, otitis media, developmental
                                      delays, atrial septal defect,
                                      feeding difficulties

  Ages 6-11                           Otitis media, dental caries and
                                      orthodonture problems, lack of
                                      physical coordination, visual
                                      problems, childhood diseases

  Ages 12-17                          Sexual health issues,
                                      contraception, sexually transmitted
                                      diseases, dental caries and
                                      orthodonture, prenatal care

  Ages 18 and up                      Birth control, sexually transmitted
                                      diseases, pregnancy and child
                                      bearing, prenatal care, medical
                                      care of alcohol intoxication,
                                      preventive medical care
  ----------------------------------- -----------------------------------

**Health Care Services for Jerilynn**

  ----------------------------------- -----------------------------------
  Ages 0-5                            Hospitalization for failure to
                                      thrive and heart surgery, pediatric
                                      care for failure to thrive and
                                      otitis media, physical therapy for
                                      muscle and physical development,
                                      in-home nursing care for
                                      post-surgical needs,
                                      dysmorphologist for diagnosis,
                                      cardiologist for heart care,
                                      dietician consultation

  Ages 6-11                           Dental care and pediatric care for
                                      childhood illnesses, such as otitis
                                      media, continued physical therapy,
                                      dental, vision, and hearing care

  Ages 12-17                          OB/GYN care for birth control,
                                      medical care for Detox, dental and
                                      vision care

  Ages 18 and up                      OB/GYN care for birth control,
                                      medical care for Detox and physical
                                      abuse, preventive care
  ----------------------------------- -----------------------------------

##### Section III:

##### Psychosocial Issues and Needs

*Jerilynn, as a young child, experienced significant trauma and neglect
by her birth mother. Her birth father's identity was unknown. It is not
clear if she was sexually abused, although this was suspected. Jerilynn,
after the move to her adoptive home, was enrolled in school. However,
she had poor peer relationships, impulsivity, anxiety, and, at age nine,
began to show highly sexualized behavior. She did not appear to connect
cause and effect and was frequently angry.*

*Her adoptive parents were concerned as Jerilynn seemed not to bond well
with them or her adoptive siblings. She did not seem to understand
social rules, jokes, or subtle social cues. She was easily frustrated
and seemed not to grasp basic abstract concepts. Her social difficulties
were the primary reason, along with her academic problems, that finally
led to Jerilynn leaving school at an early age.*

*She seemed to have little sense of danger or how to recognize who was a
friend and who was not. She became involved with multiple sexual
partners, believing that each loved her. No matter how often her
adoptive parents attempted to explain ways to keep herself safe,
Jerilynn never quite understood her parents' concern. She resented rules
and, in adolescence, refused to follow any of them. She ran away from
home, became pregnant on numerous occasions, and ended up with her
children being removed from her care. She was often homeless and
frequently spent one or more days in jail for misdemeanor crimes,
eventually being convicted on drug related charges.*

Alcohol is a neurobehavioral teratogen and can disrupt brain cell
migration in the developing fetus.[^85] Secondary disabilities are
difficulties that are the consequence of a primary disability, in this
case, brain damage. In children, adolescents, and adults with FASD, this
damage presents as impulsivity, lower abstracting abilities, a lack of
understanding of cause and effect, attention and memory problems, and
learning difficulties. While the health issues described in Section II
are serious, it is the secondary disabilities commonly experienced by
children, adolescents, and adults with FASD that are the source of most
of the long-term difficulties in this population. Secondary disabilities
can range from homelessness, mental health issues, and drug and alcohol
problems to a lack of a support system and poor peer relationships. Loss
of residential placements, loss of child custody, and social and sexual
exploitation are other concerns often expressed.[^86]

Secondary disabilities may appear at an early age often depending on the
environment in which the child resides. This section will address mental
health, behavioral, and substance abuse issues and needs of the patient
with FASD across the lifespan.[^87] It will address the various types of
therapy and behavioral management that have, anecdotally, been found to
be useful with patients with FASD. This chapter is organized in the
following manner:

-   Special needs for parents and caregivers.

-   Challenging behaviors associated with FASD across the lifespan.

-   Interventions and therapy modalities likely to be effective with
    people with FASD.

-   Integration of traditional Native values and practices into mental
    health services.

While there have been several longitudinal studies that document the
psychosocial concerns associated with FASD, there is limited clinical
research that demonstrates what therapeutic approaches are most helpful
in working with children, adolescents, and adults with FASD. Dr. Ann P.
Streissguth at the Fetal Alcohol and Drug Unit of the University of
Washington conducted one of the seminal research projects on
psychosocial needs and secondary disabilities for this population.[^88]
While highly useful, it is not clear if results from this study, which
was based on a clinical population, would generalize to individuals with
FASD not seen in clinics.

Dr. Streissguth's study showed that a significant percentage of
adolescent and adult patients with FASD had been neglected, sexually and
physically abused, had dropped out of school, and had mental health and
legal issues.[^89] Both sample groups, those with FAS and FASD, had the
same types of secondary disabilities regardless of diagnosis or IQ.
Those patients identified as having FASD had higher IQ scores. Despite
the apparently higher cognitive abilities, the group with FASD actually
had more secondary difficulties. They were identified at a later age,
not commonly viewed as having a disability, and less likely to receive
needed services.

The majority of patients in Dr. Streissguth's study had lived in
multiple homes. The number of different home placements was as high as
25. A significant portion of these residential moves occurred prior to
the child's fifth birthday. The young child was often moved due to the
birth parent's substance abuse. Social services often stepped in,
removed the child, and then attempted reunification. A lack of adequate
foster homes addressing children with special needs and behavioral
problems may lead to children being moved to multiple placements.

*"I wish I could understand the jokes of the other kids at school.
Someone tells a joke and everyone laughs at me. I laugh but, really, I
don't understand what is so funny. "*

-   *11 year old boy with FAS talking about his frustration with his
    peers*

As the child grows older, it is usually the behavioral difficulties such
as disobedience, defiance of authority, sexually inappropriate behavior,
and failure to learn from past experiences that lead to changes in
residential care. Poor communication skills are a limiting factor in the
lives of children and adults with FASD. Not being able to adequately
communicate one's needs and feelings, carry on every day conversations,
and understand even simple jokes are frustrations the patients with
FAS/FASD commonly reported by caregivers and patients. Communication
difficulties can lead to frustration, social isolation, and depression.
These secondary disabilities, mainly psychosocial issues, present the
greatest problems for these patients.

Poor language development and articulation problems are concerns
commonly cited for children with FASD. Language difficulties are also
indications of problems with thought organization, comprehension, and
communication abilities. Deficits in these areas frequently are problems
for the child in school and social interactions.[^90] Dr. Truman Coggins
of the University of Washington Fetal Alcohol Syndrome-Diagnostic and
Prevention Network (FAS-DPN) has evaluated the language of patients with
FASD for many years. In his evaluation, he assesses sentence structure,
content, language usage, and comprehension among other factors. From the
results of the assessment, he is often able to provide information about
the maturity of the patient's thinking and what areas of language and
social functions might be impacted.[^91]

An even larger issue than communication skills deficits is inappropriate
behavior. Children with FASD frequently demonstrate challenging
behaviors from early in their life. Behaviors that in early childhood
are not necessarily of concern can become troublesome as the child grows
older. These behaviors include being "huggy" and touchy, overly verbal
with "empty" speech, cheerful and oblivious to other's input, and overly
friendly. It is important, to begin as early as possible to set
boundaries and limits to aid in preventing future, more serious
psychosocial and legal problems.

Streissguth, et. al.[^92] described early identification and diagnoses,
leading to implementation of appropriate services as significant
protective factors against secondary disabilities for individuals with
FASD. A safe, stable home with minimal disruptions has also been shown
to reduce later problems and provide children with resiliency. This
seems to be common sense yet, for many families, acquiring such
stability is the most difficult accomplishment to achieve. Supporting
parents and caregivers is as crucial in addressing psychosocial needs
and secondary disabilities as it is in treating health concerns.

**Special Needs for Caregivers and Parents:**

*"If we all work together, maybe we can change our little corner of the
world"*

*- Parents of three adopted children with FASD*

As stated above, psychosocial needs are concerns that will most likely
be addressed by the mental health, developmental disabilities, or social
services system. Many children enter these systems only when the
parent's ability to care for their child is compromised to the extent it
comes to the awareness of Child Protective Services. Dr. Streissguth's
study suggests that those parents who produce children with FASD are at
greater risk for neglecting and abusing their children. Children who
have received such abuse and neglect may be more likely to demonstrate
sexually aggressive behaviors.[^93] Such behavior, whether in the home,
school, or the community, is another the reason children come to the
attention of counselors, school personnel, and the social service
system.

Below are some of the issues and concerns that should be addressed by
health care providers to aid parents and caregivers in meeting the needs
of their children. The abilities of the parents will often determine the
types of directions and interventions that will be most useful and most
likely to be followed by the parent. The ability of the
parent(s)/caregiver(s) needs to be assessed by any provider working to
set up a behavioral treatment program. The following are general
suggestions that parents, caregivers, and providers have found
beneficial in working with patients with FASD.

If needed, parents should be referred to an alcohol treatment
program.[^94] There are now programs that allow women to enter treatment
with their children. The Birth to Three Program[^95] in Seattle is an
example of a program that provides extended treatment. Women in this
program are encouraged to gain sobriety in conjunction with parenting
skills, wrap-around services, and with a client-centered, case
management approach.

If children remain with parents who are newly in sobriety, it is
important to ensure that the entire family has in-home services to aid
with establishment of structure. This is important regardless of the
basic cognitive functioning of the parent. People newly entering
sobriety are often easily overwhelmed. Sobriety can change the dynamics
of relationships. It is important that professionals recognize the
changes that can occur and how they might impact family life.[^96]

Respite care for parents and caregivers is one of the most important
services that can be provided. Being able to take a break, have time for
one's partner, and getting support from others is one of the main aids
parents and caregivers cite as allowing them to retain their adolescent
and even adult children in their care. Respite care can sometimes be
obtained through state offices of developmental disabilities and
children and families services.[^97] Parents and caregivers who are
newly in recovery or have disabilities may have difficulty navigating
these systems on their own. Social workers, case managers, and other
providers working with them can aid families in acquiring respite care
funds by ordering the forms, helping people fill them out, and attending
eligibility meetings with the client.

The first step in aiding parents and caregivers is educating them about
what are realistic expectations of their young child. Setting such
expectations should be based on the child's strengths as well as their
limitations. It is important that the parent or caregiver understand
that they are not *lowering* expectations for their child but rather
setting them at a level that can be obtained. This can help both the
child and parents to feel more successful.

Education regarding realistic expectations can be provided through a
health educator, family advocate, psychologist, pediatrician or other
health care providers. The education of the parent or caregiver does not
need to be complicated. It can be as simple as the lists enclosed at the
start of this manual. One assessment tool that has been very helpful is
the Vineland Adaptive Behavior Scales (VABS).[^98] (See Appendix 5).

The VABS is given in an interview with either the caregiver or a
teacher. While there are some concerns about geographic and cultural
limitations, the VABS provides a chance for the parent or caregiver to
discuss both their child's strengths and issues. It also gives a
standard score and age equivalent that allows the parent to understand
where their child may be functioning in comparison to other children.

Setting more realistic expectations can reduce frustration. While
education and information can be provided at the time of the diagnosis,
parents and caregivers may feel overwhelmed and unable to process what
they are told until a later time. They may need to have the information
presented and explained several times. A family advocate or case manager
that has knowledge concerning FAS can serve in this capacity as well as
be a source of referral information. With the emphasis on the family,
the term \"family advocate\" may be less threatening than a
"professional" giving this information.

*"I fell to the ground when I heard Cindy's diagnosis. Ten years later,
I am not sure if I am standing yet. "*

> *- Birth mother's reaction to learning her daughter has Fetal Alcohol
> Syndrome*

It is impossible to have healthy children if families and communities
are not also healthy. Parents, whether birth, foster, or adoptive, need
support, understanding, and care if they are to continue to provide the
same in turn to their children. The next portion of this chapter focuses
on the challenging behaviors present in patients with FASD across the
lifespan. The diagnoses presented in Appendix 3 are based on these
behaviors described below. They are manifestations of the brain damage
associated with FASD. The behaviors and problems seen in young children
are frequently precursors to those seen in older children.

A review of Piaget's[^99]^,^[^100]^,^[^101] theories of cognitive
development is helpful in understanding the delays in the abstracting
abilities associated with FASD. Moral development, according to Piaget,
takes place in stages with moral maturity and comprehension progressing
in a fairly orderly and predictable manner. Brain damage particularly in
the frontal lobes appears to disrupt and delay abstract thinking and,
thus, moral development. Disruption in moral development has serious
implications for daily and social functioning.

Some of these concerns were detailed in Section II while the others are
explained as follows:

**Challenging Behaviors Associated with FASD**

**Birth to Five Years:**

[Poor habituation and exaggerated startle response]{.underline}:
Habituation is an adaptive response that can be demonstrated in
newborns. For example, presenting a stimulus to a normal newborn that is
not of importance, e. g. snapping fingers,[^102] is soon ignored.
However, babies with FASD are not able to screen out such irrelevant
stimuli. In fact, when repeatedly presented with a stimulus, babies with
FASD become more stimulated. This inability to screen out extraneous
information is seen across the lifespan.[^103]^,^[^104]

[Sleep disturbances]{.underline}: Infants and children with FASD
frequently have disrupted sleep patterns. This may be due to
abnormalities in sleep functions from prenatal brain damage,
environmental disruptions, or both.[^105]

[Poor sucking response:]{.underline} Many infants with FASD have a weak
suck.[^106] They may not be able to concentrate on feeding if there are
too many extraneous stimuli. Some-times babies with FASD do not have
adequate muscle control to suck well. Feeding problems can lead to
failure to thrive, putting the child at greater risk of health concerns.

[Distractibility/hyperactivity:]{.underline} Poor habituation, the
inability to screen out irrelevant stimuli, is related to the
distractibility seen in patients with FASD all the way through
adulthood. Children diagnosed with FASD are often hyperactive, for
example, being restless or unable to sit still. This seems to be true
for children with FASD.[^107]

[Irritability, temper tantrums, impulsivity, and
disobedience]{.underline}: These are common behaviors and concerns often
expressed by parents and other caregivers regarding their children with
FASD. In many cases, children displaying these behaviors are labeled
obnoxious, uncooperative, and having Oppositional Defiant Disorder
(ODD). In actuality, children with FASD are frequently overwhelmed by
information and their inability to screen out irrelevant stimuli. As
noted, this problem is seen from birth in children with FASD. It takes
on more serious implications as the child grows older.

[A rigidity of thinking and an inability to adapt to changes in the
environment:]{.underline} The ability to read one's environment and make
appropriate decisions based on such information is an example of
abstracting abilities. Primarily a frontal lobe function, abstracting
abilities can be negatively impacted by prenatal alcohol exposure. Not
being able to read subtle social cues, make decisions about what clothes
to wear, not being able to adapt to last minute changes, and not being
able to make sense of even basic rules often leads children with FASD to
feeling highly frustrated, angry, and rebellious. Eventually, acting out
behavior may result.

Identifying changes in the environment and knowing how to respond to
such changes requires a person to have adequate abstracting abilities.
Young children have trouble accomplishing such tasks on a routine basis
in complex settings. However, even the youngest of children begin to
learn how to "work" parents, distinguish between friendly and not
friendly faces, and learn how "red" can mean "stop" or "hot."[^108]
Children and adults with FASD may never learn to recognize subtleties or
the importance of environmental changes. They may never have a
repertoire of multiple responses to be able to use for varying
situations responses. The inability to discriminate and generalize from
situation to situation often leads again to frustration or to the child
being viewed as disobedient.

[Poor peer relationships]{.underline}: Children with FASD, due to the
difficulties in abstracting abilities and delays in social development,
frequently have peer problems. They often do not understand the nuances
in social communications and may be seen as intrusive. These troubles
often last the lifespan. In children, the poor peer relationships may be
frustrating. As the person gets older, they can become involved in
exploitive, destructive, and dangerous relationships.

**Ages Six to Eleven Years:**

*"I like to play with four year olds but they just make me mad!"*

*- 8 year old boy with FAS*

The problems first demonstrated in younger children with FASD may not
seem overly significant or challenging. There are several reasons for
this: the often outwardly verbal and gregarious appearance seen in
children with FASD can mask true expressive language deficits, people
have lower expectations for younger children, and many of the behaviors
that become obtrusive in older children are viewed as "cute, cuddly, and
adorable" in younger children. The behaviors described do not diminish
as the brain damage does not repair itself. The presentation of the
behaviors may change and other issues may emerge. Below is a list of
challenging behaviors seen during the latency period:

[Difficulty in abstracting abilities:]{.underline} These problems
include the child having difficulty separating fact from fantasy and
being easily influenced by others. Not being able to connect cause and
effect can be viewed as not having a conscience. In reality, it is
another sign of the brain damage associated with prenatal alcohol
exposure. As the child grows older, they are at risk for increasingly
dangerous behavior without understanding possible consequences.

[Temper tantrums, lying, stealing, disobedience, and defiance of
authority:]{.underline} These behaviors are often viewed as being
deliberate on the part of the child. While that can certainly be the
case, it is also possible that the child may simply not understand what
is being asked of them. When the world is too confusing, and when
abstract concepts such as private property are not comprehended,
frustration, temper tantrums, and acting out can occur.

Lying can be deliberate. However, many children with FASD simply respond
with whatever is on their mind. An analogy the author commonly uses to
describe the brain function of children with FASD is that of the "Magic
8-Ball." A person with FASD can be asked the same question ten times,
but come up with ten different answers. Or conversely they can be asked
ten different questions and supply the same answer. Just like with the
8-Ball, whatever answer is "floating" near the top is the one that comes
out. The same is true on a behavioral basis. People with FASD may be
more likely to act out impulsively with no thought to the possible
consequences.

The more complex or complicated the situation, the more difficult it is
for the child with FASD to respond quickly and appropriately. While all
children can have episodes of irritability, temper tantrums, and
disobedience, most children understand and recognize eventually what
behavior is appropriate. Children with FASD are more easily confused and
may not learn if information is presented in too complex a manner or if
any specific situation is unfamiliar.

*"How can the car I stole be private property if it was parked on a
public road?"*

*- 16 year old youth with FASD on being arrested for grand theft auto*

Private property and personal possessions are abstract concepts.
Impulsivity and failure to understand these concepts often create
situations where the child ends up "stealing" things. There is often no
"buffer" between the thought and the action with children with FASD. The
thought becomes the deed and often the deed becomes the problem.

Not having a good sense of cause and effect can put children and adults
with FASD at a disadvantage. They can be easily led and negatively
influenced. An example of this is where the children and adults with
FASD have been told to "go into the store and get something."[^109] The
child or adult will proceed into the store and steal the item. When
asked why they had stolen something, a common response is to look
puzzled as no one told them to buy the item, simply to "get it."

Brain damage from prenatal alcohol exposure also affects the child's
ability to understand and follow directions. Many children with FASD are
viewed as disobedient and defiant when in reality they were given either
too complex or confusing information. Multiple directions may mean
either the first or perhaps the last direction is remembered.[^110]
There may be no recall of any information in the middle. This is not
truly disobedience or defiance, but it is frustrating to parents,
caregivers, and teachers.

[Hyperactivity/distractibility]{.underline}: The inability to attend to
one stimulus for any length of time or screen out irrelevant stimuli is
seen in younger children and continues to be demonstrated as the child
grows older. In addition, physical hyperactivity, and restlessness often
become more apparent when the child enters schools.[^111]

[Memory deficits:]{.underline} As the child begins school, it is
expected that they will remember rules and previously learned
information and adhere to social norms. Yet, many if not most children
with FASD do not have the brain development to meet these expectations.

Asking a child with FASD to respond to several questions or tasks at one
time is likely to lead to failure to complete any of them. Failing to
respond to the parent, caregiver or professional's expectations may lead
the child to be viewed as uncooperative, disobedient, and irritable. In
reality, they simply may not understand what is being asked of them.
This is an illustration of communication problems for people with FAS
that persist across the lifespan.[^112]

[Impulsivity and difficulty predicting or understanding the consequences
of their own or others' behavior:]{.underline} Mentioned earlier were
the difficulties children with FASD have in monitoring and controlling
impulses. At any point where frontal lobe damage occurs, there can be an
increase in impulsivity. This is true in children with FASD, regardless
of their IQ scores.

[Inappropriate sexual behavior]{.underline}: One of the most distressing
difficulties facing children with FASD and their caregivers is that of
inappropriate sexual behavior. Children with FASD often have trouble
understanding and recognizing personal boundaries. Social immaturity,
impulsivity, and sexual curiosity are a mixture that often leads to
problems in residential placements and, as the child gets older, legal
difficulties. Many children with FASD have been sexually abused, often
very early in their life. They are easily victimized and may be molested
by other children or adults in the community.[^113]

Children who have been sexually abused may be at greater risk for sexual
acting out. If the child is demonstrating such behaviors, it is
important to assess if there is a history of such abuse and determine if
the child is still in a high-risk situation.[^114] Appropriate action
should be taken to ensure the child's safety.

Not every behavior listed above will be seen in every patient with FASD.
The severity of problems will also vary from patient to patient. Each
child with FASD should be evaluated for the individual they are and with
attention to their strengths as well as any challenging behaviors they
might show.

**Ages Twelve to Seventeen Years:**

*"Why can't I look different so people know I have problems?*

*- 17-year-old young woman with FASD*

Adolescence is a difficult time for many people whether or not they are
affected with FASD.[^115] It can be especially trying for those patients
who have brain damage as a secondary result of prenatal alcohol
exposure. The difference between chronological age and maturity level
increases and becomes more apparent in many aspects of the patient's
life. The concerns often expressed regarding challenging behavior
continue as the patient grows into adolescence. The abstracting deficits
noted in the latency period remain but can change in presentation.
Deficits in abstracting abilities and the delays in moral development
become more apparent and more disabling.

[Faulty logic]{.underline}: Abstracting problems continue to be of
concern. Difficulties in the patient connecting cause and effect are
common, but may have increasingly severe consequences. It is often
difficult for adolescents to discriminate between fact and fantasy. By
this age, this ability should be well established.[^116] In situations
where good judgment, forethought, problem solving, and insight are
important, the consequences of faulty logic can run from the comical to
the tragic.

[Increasing social difficulties and isolation:]{.underline} Social
expectations increase the older a person becomes. The gap between
capabilities and expectations increases. The rules become more
complicated and people have less patience with displays of immaturity
and impulsivity. The behaviors that appeared endearing when the child
was younger now are seen as intrusive and inappropriate. The change of
attitude toward the patient is often confusing and frustrating for them.
The complaint many people with FASD have expressed to the author is that
"the rules have changed and no one told me."

Adolescents with FASD may have difficulty making and keeping healthy
friendships. They are often:

-   Egocentric

-   Impulsive

-   Aggressive

-   Unpredictable in their behaviors

-   Limited in their ability to express empathy

All of these behaviors make it difficult for people with FASD to
function in a healthy manner. Not being able to manage impulsivity and
keep appropriate boundaries can also lead, at this age and even younger,
into involvement in vandalism and other criminal activity. One
frequently asked question is whether adolescents with FASD are at
greater risk to be involved in criminal activities.

It appears that the issue is not more inherent criminal intent. Rather,
poor peer relationships, little sense of cause and effect, being
accepted only by youths on the "fringe," and being taken advantage of by
others put adolescents with FASD at greater risk for being involved in
such activities.

[Low Motivation]{.underline}: This results in less participation in and
difficulty performing necessary activities such as schoolwork,
sustaining employment, and activities of daily living. Low motivation is
often related to not being able to recognize the possible outcomes of
any specific behavior. Another issue is failure to discriminate what is
important from what is not, e. g. , it may be more important for a child
with FASD to remember to bring his gum to school than to wear clean
clothes or bring his pencil.

The intrinsic satisfaction thought to be associated with many tasks of
work and daily living are not necessarily a driving force for
adolescents with FASD. Understanding and delaying gratification can be
challenging for anyone. For people with FASD, delayed outcomes may feel
like desired behaviors are not being reinforced and frustration is
increased.[^117]

[Pregnancy/Fathering a Child:]{.underline} Section II outlined many of
the concerns about sexual health and contraception associated with this
special population. There is limited information about men with FASD who
father children. There are no firm statistics that indicate if these men
are raising their children, married, or employed. There is only limited
information available about women with FASD and their offspring. What is
known is not encouraging. There appears, anecdotally, to be a higher
rate of children being removed from women born to FASD[^118] even if the
offspring do not have FASD themselves.

Removal of children from the home of adolescent parents with FAS is
likely related to difficulties that adolescents with FASD have in even
meeting their own basic needs let alone those of a child. All of the
health concerns associated with teen pregnancy come into play with
adolescents with FASD. These adolescents have increased cognitive
deficits, short attention span and concentration, and limited ability to
follow through. These factors greatly increase the risk to any child
born to an adolescent girl with FASD.

In the author's experience, teenage girls with FASD are less likely to
use contraception, more likely to have multiple births prior to age 21,
and less likely to be able to adequately provide for their children.
Unfortunately, all of this is anecdotal information. If even a small
portion of it is accurate, teen girls with FASD and their offspring are
at an increased risk for parenting problems and all the attendant
concerns.

Many adolescent girls with FASD who are sexually active may also have
multiple sexual partners and, thus, multiple fathers for their children.
A tragic, but sadly common story in the author's experience is that of a
young girl with FASD who was sexually abused, became sexually active at
an early age, did not use contraception or protection from sexually
transmitted diseases, had three babies by age 18, and was not able to
keep any of them because she could not adequately provide even the most
basic care for herself. Child Protective Services (CPS) removed her
children from her care and another generation of children at-risk came
into being.

One young woman of nineteen who was pregnant with her fourth child had
been referred to the author for a parenting evaluation. Her first three
children had been fathered by two different men. All were out of the
parent's care due to allegations of neglect and severe abuse. CPS was
poised to take the fourth child. The young woman was questioned about
her intentions to use long-term contraception after the birth of this
baby. The young woman indicated that she was not so inclined and stated
she "was going to keep having babies until the State let her keep one."

In actuality, the State had no intention of ever allowing a child to
remain in the care of this mother. Sadly, shortly after the fourth baby
was born, prior to CPS taking action to remove this child, the child
died of injuries suffered at the hands of the father who was 21 at the
time. The father was sentenced to ten years in prison for the death of
his child. The young mother was charged with failure to protect and was
sentenced to five years. This case study is not typical in terms of such
a horrendous outcome. It is, however, typical of the issues and
vulnerabilities faced by young women with FASD as they move into
adolescence and become sexually active and produce children.

Mental health issues are one of the most significant concerns to arise
as the person with FASD grows into maturity.[^119] Below are only a few
of the concerns that are more frequent in adolescence. It should be
remembered that many of these concerns have their origins early in life,
but may not be diagnosed until the patient enters their teens.

[Sexual/Emotional Abuse and Trauma:]{.underline} Sexual abuse in early
childhood or in adolescence can lead to sexualized behavior,
indiscriminate sexual activity, being more vulnerable to sexual
exploitation, and posttraumatic stress
disorder[^120]^,^[^121]^,^[^122]^,^[^123]^,^ [^124]^,^[^125] (See
Diagnoses in Appendix 3).

[Low Self-Esteem:]{.underline} This is commonly reported of adolescents
with FASD. Their awareness of their limitations increases. Their ability
to overcome these limitations unfortunately does not. The "gap" between
expectations and abilities grows even greater. The inability to
participate in social activities and compete and cooperate successfully
with their peers leads to internalized lower self-esteem and
depression.[^126]^,^[^127]

[Depression:]{.underline} This can result from many causes, e. g. low
self-esteem, feeling isolated, or unaccepted. Anger, withdrawal, sexual
acting out, and mood swings can also be signs of
depression.[^128]^,^[^129]^,^[^130] As Dr. Streissguth noted in her 1996
study, adolescents and adults with FASD are at an increased risk for
depression. What was not detailed, however, were specific etiologies
that might have accounted for these results. Causes were postulated but
this is an area where more research, both in cause and successful
intervention, is desperately needed.

Ann Streissguth's study of mothers who produced children with FASD
indicated that 97 percent, had some form of mental illness with
depression being the most frequent symptom. The predisposition for
mental illness, particularly depression, is often inherited, thus it is
not surprising that children with FASD also suffer from this condition.
Depression is one of the more treatable forms of mental disorder.
Psychotropic medication and cognitive behavior therapy, which would have
to be modified by FASD, are commonly effective in treating depression.

*"I wasn't trying to commit suicide. I just like the taste of cough
syrup."*

> *- 16 year old girl with FASD upon being admitted to the emergency
> room for alcohol poisoning from drinking two large bottles of cough
> syrup*

[Suicidal Ideation and Attempt:]{.underline} There are no firm
statistics regarding the number of people with FASD who have attempted
and completed suicide. In the few situations the author is aware of such
attempts have been done on impulse with little organization or advance
thought. This is the good news. The bad news is the risk of harm or
death if a person with FASD impulsively takes an overdose of pills or
makes another type of attempt. Such impulsivity is yet one more reason
why constant supervision and support is crucial.

[Substance Abuse:]{.underline} This has been a concern most often noted
if there is not a substance free environment. It has been hypothesized
that there is a genetic predisposition for people with FASD to be at
greater risk for alcoholism. To date, no alcoholism gene has been
identified. As with many mental health issues, it is most likely a
combination of both nature and nurture that contribute to a higher risk
of alcoholism and other addictive disorders.

[Loss of residential placement:]{.underline} This occurs more often than
what might be expected for adolescents with FASD. The common reasons
given for this are the challenging behaviors described in this section.
Adolescence is often a time for rebellion and assertion of one's
identity. However, behaviors commonly seen in adolescence are often
exacerbated by the secondary disabilities associated with FASD.

[Adolescent rebellion:]{.underline} Together with poor judgment and
impulsivity, this often leads adolescents with FASD to resent and
resist, beyond normal, the structure that is so necessary for their
survival. Leaving home with no resources, no support, and no sense of
possible consequences puts the adolescent with FASD at serious risk of
exploitation and abuse. It is the severity of these issues in
adolescents with FASD that depletes the emotional and often financial
resources of families causing a loss of residential placement, and at
times, rejection by their families.

**Ages Eighteen and Up**:

*"I am old enough to make my own good decisions. "*

> *-17-year-old girl with FAS as she screamed and ran out of her therapy
> session upon being told she could not spend the night with her
> boyfriend*

The problems and concerns seen in adolescents with FASD continue into
the adult years but often without the benefit of any services, steady
employment, financial support, or structure. Below is a listing of the
issues and concerns frequently noted in adults with FASD.
[^131]^,^[^132]^,^[^133]^,^[^134]

-   Unpredictable and impulsive behavior

-   Aggressive and violent behavior

-   Depression/suicidal ideation and attempts

-   Poor comprehension of social expectations

-   Increased expectations of the patient by others

-   Increased dissatisfaction towards the patient by others

-   Withdrawal and social isolation

-   Social/sexual/financial exploitation

-   Mental health issues

-   Lack of birth control use/pregnancy/fathering a child

-   Child care

-   Legal issues such as child custody or criminal incarceration

Not every person with FASD demonstrates all of these behaviors. Not
every adult patient with FASD will necessarily show aggressive or
violent behavior. It is not known if every person with FASD will have
mental health concerns. What does appear to be the case, however, is
that without structure and support, children, adolescents, and adults
with FASD are at risk for a myriad of problems that become more
complicated and challenging across the lifespan.[^135]^,^[^136] As
previously stated, mental health issues become more imperative in
adolescence and adulthood. The next section details the mental health
and behavioral diagnoses associated with FASD.

**Behavioral Interventions and Therapy Modalities for Working with
Patients with**

**FASD:**

The problems seen in early childhood are precursors to difficulties
experienced by this population across the lifespan.[^137] Below are
interventions that have been recommended for parents, caregivers, and
professionals. As with the difficulties being present across the
lifespan, the interventions listed below can be implemented and used to
aid people with FASD of all ages in reaching their full potential.

Developing appropriate socialization and communication skills and
behavior are two of the most important areas where professionals can aid
families and patients affected by FASD. Structure, simple and concrete
directions, and modeling are the primary methods of teaching children
appropriate communication and social skills. Typically children learn
these skills through normal life experiences while children suffering
from brain damage, like those with FASD, need specific instructions such
as social skills training. Eventually, the majority of children and
adults learn to recognize and respond to social expectations and rules.
They are able to incorporate a wide variety of responses into their
behavioral repertoire and to discriminate in choosing which behavior is
appropriate. For children with FASD, it is precisely these types of
decisions that are most difficult.

Steps to aid children with FASD in acquiring positive communication
skills include:

-   Helping the parents and caretakers to better understand the child's
    methods of communication. This includes recognizing the child's
    nonverbal cues, e. g. starting to fuss when becoming frustrated,
    withdrawing when over stimulated, and throwing things when unable to
    complete tasks.

-   Helping the child articulate speech by speaking low, simply, and
    clearly. [^138]

-   Ensuring that the child receives speech therapy when necessary.

-   Teaching parents and caregivers to:

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-   Model "positive feedback and respect."[^139] It is not enough to
    simply tell the child to stop a specific behavior. It is important
    to tell the child what is expected and demonstrate the desired
    behavior at the same time as telling the child what needs to change.

-   Provide the child with a concrete means of communicating. Children
    with FASD may not be able to articulate their needs and feelings.
    Having a chart of facial expressions with the label underneath the
    face can help a child identify and express their feelings.

-   Use visual cues such as hand movements to reinforce words, e. g.
    holding out a hand when saying "Stop!"

It is not just parents and caregivers who can use interventions such as
those listed. Professionals working with children with FASD can use them
as well. In fact, when working with parents or caregivers of children
with FASD, the professional can serve as a model for these behaviors and
interventions. The following recommendations are loosely grouped in a
chronological manner. Concerns seen in early childhood are frequently
precursors to problems in adults; recommendations and interventions used
in early childhood can be the formation to needed structure and support
in later years.[^140]

Professionals can help parents and caregivers in such prevention efforts
in the following ways:

Teach parents to:

-   Identify the child's strengths and use them as a means of
    intervention. Every child has some talent or interest. Professionals
    can facilitate reinforcement of appropriate behavior by helping
    parents recognize options for positive responses to desired
    behaviors. Such reinforcement does not have to be monetary. It can
    be as simple as the caregiver or parent spending extra time with
    their child, going to a movie, or taking a walk. Encouraging parents
    and children to identify and discuss what is positive motivation for
    the child is another way professionals can be of service to families
    affected by FASD. However, in order to be effective positive
    reinforcement needs to occur as soon as possible when the child
    demonstrated the desired behavior.

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-   Redirect the child as soon as possible into positive behaviors.
    Reinforce the child whenever they are showing appropriate behavior.
    Early intervention to keep situations from escalating is not always
    possible, but can occur if parents and caregivers are able to
    recognize the first link in "a chain of behavior." For example, if
    the first behavior indicating a child is escalating out of control
    is the child clenching their fist, a parent could redirect their
    child into another activity at this point. Professionals can help
    draw out chains of behaviors with families and children to help them
    understand how one behavior leads to another. The child can also be
    taught relaxation skills and be cued to engage in these skills when
    they start to become upset.

-   Rename the child's behavior from negative to challenging, e. g.
    seeing the child as frustrated and confused rather than as
    necessarily oppositional or defiant. [^141] This is not to say that
    children with FASD cannot be defiant. Any child can. However,
    children with FASD often do not understand what is being asked
    rather than intending to be "bad."

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-   Allow themselves as parents and caregivers to not "always" be
    perfect. Just as parents need to set realistic expectations for
    their children, they need to set appropriate expectations for
    themselves. Allowing for mistakes and natural frustration can take
    pressure off the whole family. Professionals working with families
    affected by FASD can provide reassurance about normal feelings of
    frustration along with helping develop multiple options for
    responding to challenging behaviors. Just as importantly,
    professionals can also reinforce for parents and caregivers the
    things they are doing correctly.

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-   Develop networks for support. Families in many communities started
    support groups to educate, support, and validate each other. These
    grassroots groups have been responsible for advocating and getting
    legislation passed to benefit their children as well as providing a
    safe forum for parents. Professionals can facilitate support groups,
    attend as guest speakers, and work in partnership to develop such
    groups. Professionals with an awareness of support groups in their
    community can make referrals to such groups when appropriate (See
    Appendix 7).

-   Aiding the family in acquiring a case manager. This is an important
    service professionals can provide. The case manager's role is to
    help obtain and coordinate needed services. As the child grows
    older, this may include court and legal involvement and acting as a
    liaison. Acquiring services from social service agencies can be
    difficult and frustrating. Having a case manager aid families in
    obtaining needed services and support can help in reducing stress
    and tension. Professionals of all types can serve as case managers
    although the ideal is to have this as a full-time position within an
    agency serving the family, e. g. the Division of Developmental
    Disabilities or Child Welfare Services.

> A good example of this approach is the Community Protection Program
> funded through the Washington State Division of Developmental
> Disabilities (DDD). This program is for adults with developmental
> disabilities who have had legal issues or community protection
> concerns. This program provides 24-hour supervision and support.
> Participants in the program are able to work, go to school, and lead
> fairly normal lives, albeit with 24/7 supervision.
>
> The professional in this role provides training in special needs and
> supervision guidelines, serve as therapist for the client, and aids in
> developing therapeutic and behavioral interventions.
>
> Many individuals with FASD are not deemed eligible for Development
> Disabilities Services (DDS) due to their IQ levels being too high, or
> dual diagnosis. We should work toward all individuals diagnosed with
> FASD being considered eligible for DDS assistance.

-   Establish low to moderate levels of stimulation. The patient's
    limited ability to deal with stimulation, as noted in previous
    sections, begins at birth. Individuals with FASD are often easily
    over-stimulated. Keeping the atmosphere as calm as possible helps
    children be less agitated and hyperactive. Professionals can explore
    the family situation within the confines of their office or make
    home visits. Regardless of where consultation takes place, the
    professional's role is to identify situations where the level of
    stimulation in the environment can be changed to meet the needs of
    the child. Examples of reducing the level of stimulation in the
    household can be as simple as turning the lights down low and
    closing a door when putting a child to bed. It can be more
    sophisticated such as deciding how to decorate a child\'s room or
    setting up a structured environment for the entire family. The
    professional, in consultation with the family, can determine the
    what, where, and how to reduce levels of stimulation and promote a
    calming environment.[^142]

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-   Provide simple, concrete directions, and give them one at a time.
    While all children need structure and rules, making a situation too
    complicated can make it difficult for children to remember and
    follow the required rules. Use of clear, concrete, predictable, and
    immediate consequences is crucial. Many people view consequences as
    negative. Consequences can be positive or negative, and if
    appropriate, highly effective in behavior change.

> ![](media/image18.wmf){width="3.3055555555555554in"
> height="3.3069444444444445in"}
>
> Given the difficulties connecting cause and effect that many patients
> with FASD have, it is important that any consequences be given
> immediately. Parents and caregivers may focus on challenging behaviors
> and overlook the positive. Professionals, with less emotional
> involvement can be of assistance in identifying appropriate
> interventions and designing behavioral programs. Involving the patient
> in such programs and ownership of such plans results in a greater
> willingness on the part of families to continue to support and
> participate in such behavior management programs.

-   Provide a list of daily chores in writing with increasing
    responsibility as the child grows older. Professionals can aid in
    developing such lists and making sure they are appropriate to the
    child and the family environment. Each task is spelled out in simple
    terms with positive reinforcement for the completion of daily living
    skills provided on an every day basis.

![](media/image19.wmf){width="2.908333333333333in"
height="3.670138888888889in"}

*"I won five gold medals and three bronze medals at the Special
Olympics. I am so proud of myself. "*

> *-43 year old man with FAS after participating in a local Special
> Olympics competition*

-   Structured leisure time, such as participation in organized
    sports, e. g. Special Olympics and participation in clubs for
    children with disabilities is often beneficial according to
    anecdotal reports. These can provide positive input and outlets for
    patients with FASD. The professional working with families affected
    by FASD can aid in identifying and accessing community resources.
    Recreational and sports activities can be used to provide structure
    to the patient with FASD. Such services are not just for younger
    children and adolescents. Adult patients can also benefit from
    participation in activities such as Special Olympics.

> ![](media/image20.wmf){width="4.68125in"
> height="3.2493055555555554in"}
>
> There is little clinical research that shows how successful patients
> with FASD are in such activities. However, patients are often positive
> in the recounting of simple participation and victories. Based on
> clinical and family reports, it does appear that participation in
> these activities can increase self-esteem, provide appropriate social
> contacts, and positively structure people\'s time.

**Speech and Language Services:**

As previously discussed, speech, language, and articulation difficulties
are frequently seen in children with FASD. Speech and language
limitations can negatively impact the patient's ability to communicate
and also lead to lower self-esteem. Problems in language usage and
comprehension may be overlooked due to the "chattiness" and outwardly
verbal appearance of many patients with FASD. Part of the diagnostic
evaluation through such clinics as the University of Washington FAS-DPN
includes a speech and language assessment component. This assessment
provides information on how well the patient comprehends and uses
language as well as what areas might need remediation.
[^143],[^144],[^145]

Speech therapy to aid the patient in better articulation should be
written in as part of an IEP and should begin as early as possible (See
Appendix 6). Such therapy is frequently available through schools.
Parents and caregivers should be taught techniques that can aid their
child at home. Krepelin[^146] has written a manual with easy to use
exercises that can become part of a daily routine for the child.
Encouraging a wide variety of language and different words to describe
experiences is useful in developing a larger vocabulary. This can also
be helpful in increasing overall verbal skills and comprehension.

**Mental Health and Substance Abuse Treatment Approaches:**

Behavioral therapy and drug and alcohol
treatment[^147]^,^[^148]^,^[^149] should not be based on a "cookie
cutter" approach. They should be tailored to the individual with sound
therapeutic principles underlying the treatment program. Prior to the
implementation of any treatment or therapy program, all providers
involved should have a basic understanding of FAS/FASD, the patient's
skills, deficits, and the environment in which the patient will reside.
Psychological, academic, and adaptive evaluations should be done at the
start of any such treatment or placement and continue on a regular
basis. Assessment can direct therapy. Such evaluations can measure
progress and redirect therapy, identifying new issues as they come to
the forefront.

IQ tests, while generally valuable, are not always the most appropriate
assessment instruments. It is not necessarily the intelligence of the
person that decides their daily living success. The day-to-day world,
managing personal affairs, and keeping out of danger are highly
important skills.

The following section details the concerns of substance abuse and mental
health assessment and treatment. To the author\'s knowledge, there have
not been any large, formal outcome studies that detail what types of
therapy are most useful for patients with FASD. This is a glaring area
of omission that, hopefully, will be addressed by the scientific
community in the near future.

Standard insight therapy is not generally recommended for patients with
FASD. Baxter[^150] states that traditional insight therapy can be
useful, but the "key is to link talk therapy to physical representations
of the issues." This is not traditional insight therapy, which relies on
the client to come to an abstract comprehension of their behavior, the
causes of their behavior, recognizing when behavior is appropriate, and
being able to generate their own solutions and increase healthy
behaviors.

Baxter makes several points that deal with providing talk therapy to
clients with FASD. One is that people with FASD can have insight.
Another is the need for people with FASD to learn to express and
adequately deal with anger. It is important to allow people to tell
their story and express their feelings. This is particularly true of
people who have experienced trauma, grief, and loss. However, once the
client leaves the therapy session, they still need to have skills and
support to manage their behavior. This is an area where, in the author's
experience, "talk or insight" therapy needs to have concrete connections
to the "world" the client lives in.

It should not be assumed that simply because a person has FASD they
cannot receive some benefit from insight therapy, nor should it be
assumed that they can. Therapy should be tailored to meet the individual
needs of the client. This requires the therapist to have a familiarity
and comfort with a variety of techniques while providing stability and
consistency at the same time. Part of the initial evaluation when a
client begins therapy should be to gain as much information as possible
to determine what variety of approaches might best meet the needs of the
client.

Another therapeutic approach is positive behavior
support.[^151]^,^[^152]^,^[^153]^,^[^154] This approach stresses
short-term goals, emphasis on the patient\'s positive behavior, and
redirection from challenging behaviors to appropriate actions. Concrete
approaches, modeling, and aiding the patient in articulating their
feelings and needs in a positive manner are important aspects of therapy
and treatment.[^155] Therapists should also be aware of and prepared for
the emotional liability of patients with FAS/FASD.[^156]

One therapeutic approach that has been utilized with patients with FASD,
(See Appendix 7), is art therapy. Many children, adolescents, and adults
with FASD are creative and enjoy art. Using art as a means of expressing
feelings is not a new notion. This is one approach that may well be
worth cultivating. However, the effectiveness of this model has not been
vigorously evaluated.

![](media/image21.wmf){width="5.68125in" height="4.875in"}

A common approach to therapy for trauma victims is \"retelling and
reframing\" their experiences.[^157]^,^[^158]^,^[^159] Reframing implies
that the person has the cognitive and abstracting abilities to use these
approaches. In actuality, the retelling of the story may be useful in
working with patients with FASD who have been traumatized. Instead of
cognitive reframing, however, identifying and reducing challenging or
destructive behaviors that may result from trauma may be more useful. It
is difficult to assess the efficacy of therapeutic approaches without
outcome studies. Despite the paucity of such studies, the therapist is
encouraged to have familiarity with as many therapeutic approaches as
possible.

![](media/image22.wmf){width="6.4319444444444445in"
height="4.095833333333333in"}

*"I drink because my friends all drink. I'm left out of a lot of things
anyway. If I don't drink, no one will like me. "*

*- 29-year-old man with FASD on his substance use*

Drug and alcohol treatment should be made accessible for patients with
FASD, if needed. One of the first things given to people when they enter
drug and alcohol treatment is structure. [^160]^,^[^161]^,^[^162] One of
the first things lost at the end of treatment is structure. It is the
drug and alcohol-free environment, not necessarily insight that is of
the most use to patients with FASD who enter drug and alcohol treatment
programs. Without continued structure and support, sobriety is difficult
for anyone.[^163]^,^[^164] Following is a listing of areas of treatment
to be addressed. For people with FASD who have impulse problems and poor
peer support, provision of structure can be one of the most important
aspects of treatment.[^165]

Twelve-step programs provide valuable tools for many people in recovery.
However, they are based on insight, introspection, and self-motivation.
These are not commonly areas of strength for the patient with FASD.
Professionals who are screening for substance abuse and providing
treatment need to be aware of these factors and plan treatment
interventions according to the ability of the patient.

Treatment programs need to be aware of the possibility that a
significant portion of their patients may well be affected by prenatal
alcohol exposure. Professionals that design and implement substance
abuse programs will need to recognize the wide diversity that might
exist among their patients in terms of abstracting abilities, behavioral
control, introspection, and learning. A structured aftercare program
addressing psychological and environmental needs may be more successful
in aiding a person with FASD maintaining their sobriety. Based on the
experience of inpatient treatment programs, the higher the level of
structured aftercare, the greater the likelihood of success.[^166]

Anecdotal data and limited clinical research available suggests that
structure and consistency from the treatment setting to the home will be
most effective.[^167] Given the need for structure among patients with
FASD, it would seem to follow that such aftercare and a substance-free
environment would be even more important. There is need for long-term
follow-up studies that determine which drug and alcohol treatment
programs are most successful for these groups of patients.

It is important for the therapist to take a multimodal approach to
therapy and treatment. Flexible structure and creativity are important
tools for the therapist and the family to keep at hand. Specific
examples of such flexibility include:

-   Allowing the client to "take a break" at various points in therapy.
    Sitting in a chair for fifty minutes can be difficult for anyone.
    Talking about traumatic issues, coupled with the, perhaps,
    unreasonable expectation of the person with FASD to attend for
    nearly an hour, can create stress and frustration. Allowing the
    patient to change to a different topic when they feel highly
    stressed and then redirecting the conversation back to the topic of
    therapy can be helpful.

-   Allowing children to color and tell stories about their drawings and
    using such stories to help them problem-solve is often useful.

-   Providing a sheet with the faces of feelings and moods can be used
    as a model for the child to tell about their issues and/as a model
    for drawing out their feelings.

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-   Ensuring that the patient is allowed to give their input.
    Identifying and using positive reinforcements for appropriate
    behaviors that the patient views as important is more likely to
    increase participation.

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-   Participation of caregivers and families in therapy can be useful
    for a variety of reasons:

> ![](media/image23.wmf){width="3.6194444444444445in"
> height="4.252083333333333in"}

-   It allows the therapist to model appropriate behaviors such as limit
    setting, clarification in communication, and healthy ways of
    expressing needs and feelings.

-   It decreases the likelihood of the patient presenting diminished and
    false information.

-   It increases the probability of consistency from one setting to
    another.

**Sexuality and Sexual Issues:**

*"Sex!?!? Sex!?!?! My son can't be sexually active. I promised the judge
when I adopted him that I would not let him have sex until he was 45
years old!"*

> *- mother of a 19-year-old man with FAS upon learning her son had
> become sexually active*

Sexual acting out and inappropriate sexual behaviors are of increasing
concern among caregivers of people with FASD and professionals working
with this special population. While these are commonly reported issues,
they are some of the most difficult for both caregivers and
professionals to address. Sexuality is a basic human need, but is often
overlaid with cultural, personal, societal, and religious values.

Education of parents and caretakers regarding age appropriate sexual
development is critical. Many parents and caregivers have difficulty
when it comes to their children developing into sexual beings.[^168]
Yet, nothing is more natural or predictable.[^169]^,^[^170]^,^[^171]
While people with FASD may have cognitive deficits, physiological sexual
development usually occurs in the normal timeframe. Helping parents
understand what normal sexual development is and supporting parents
through their child's sexual changes is an area where professionals can
be of extra support.[^172] Professionals providing such information and
support need to be aware of their own issues and biases with regard to
sexuality and sexual orientation and other issues such as masturbation.

Parents, caregivers, and patients need clear and understandable
education regarding sexual development, birth control options, and
protection against sexually transmitted diseases (STDs). This is one of
the most sensitive and difficult areas for caregivers and parents to
discuss with their children. Professionals can facilitate communication
by providing an opportunity for a straightforward, matter-of-fact
conversation. Having materials that provide information visually as well
as in written form are useful. Materials may be acquired from agencies
such as The Arc and Planned Parenthood (See Appendix 7).

Education of parents, caretakers, and patients is crucial to help
protect against sexual exploitation. This is an area where good
judgment, thoughtful anticipation of possible outcomes, and positive
peer support are critical. It is also where patients with FASD are most
vulnerable. While it may seem a nearly impossible task, limiting access
to negative peer influences is one of the most positive and proactive
ways parents can help ensure the sexual and emotional safety of their
children.[^173] This can be difficult as children move into adolescence
and the adult years. If such choices can be supported earlier in life,
they may be more likely to be made at later ages.[^174]^,^[^175]

Therapy with children, adolescents, and adults with FASD who have
demonstrated sexually aggressive or inappropriate sexual boundaries may
be a demanding endeavor. The underlying goal, no matter what the
situation, is to ensure safety for the community and the client. This
basic goal needs to be stressed to the family and patient at the start
of treatment and throughout the course of therapy. Professionals should
be aware of applicable state abuse reporting laws.[^176] The limits of
confidentiality need to be conveyed, verbally and in written form, when
therapy commences and on a regular basis.

For people with FASD who have deficits in abstracting abilities, it is
important to explain the limits and bounds of confidentiality and
reporting in simple and concrete terms. It is not enough to simply ask
the patient if they understand what is being asked. Having the patient
explain back to the therapist what they have heard, in their own terms,
is a more effective means of determining if the client truly comprehends
the concepts presented. These concepts should be clarified prior to the
start of any therapy.

Sexual deviancy therapy is an area where there is an increasing body of
literature. However, there is limited information on assessment and
therapy with developmentally disabled sex offenders, including people
affected by FASD. Anna Salter,[^177] Fred Berlin,[^178] Reid
Meloy,[^179] Nicholas Groh,[^180] and Tim Kahn[^181] are all excellent
resources for designing assessment and treatment programs for sexually
aggressive and deviant children, adolescents, and adults with
FASD.[^182]

This section will present only a few of the approaches that, based on
anecdotal reports, appear to be successful in working with people with
FASD with sexual issues.[^183] Only very limited research has been
conducted in this area. This is an area where it is critical that
clinical and outcome research is conducted because this appears to be an
area of increasing frequency and severity among this population.

The following recommendations are based on a community-based approach
where there are still family members or caregivers closely involved with
the patient. Where there is not structure, support, or a family member
or caregiver involved, it is far more difficult to ensure that safety
plans, homework, thought-stopping techniques, covert sensitization,
relapse prevention, and other common sexual deviancy techniques are used
on a day-to-day and consistent basis by the patient. For the reader not
familiar with these approaches, see the [Reference]{.underline} and
[Resource]{.underline} sections for trainings available in these areas.
The following section will touch on only a few basic approaches.

.

While parents and caregivers may be involved in the therapy sessions,
there will be times when the client will need time and privacy with the
therapist. This should be respected. In sexual deviancy therapy, as much
as possible, it is wise to include family members or caregivers in the
therapy sessions. Inclusion of family members or caregivers can:

-   Reduce the amount of false information presented by the client in a
    therapy session

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-   Provide family members and caregivers with intervention alternatives

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-   Increase the therapist's awareness of any family and community
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-   Increase consistency from therapy to the home environment and vice
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-   Decease denial on the part of family members as regards to the
    seriousness of any sexual issues

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-   Minimize the secrecy that often surrounds inappropriate sexual
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-   Increase accountability of the patient and any caregivers to ensure
    that safety plans put in place are closely followed

Development of a safety plan is one of the first steps when beginning
therapy for sexual issues. The safety plan should be written and
presented in concrete terms, and should specify:

-   The triggers for reoffending (Danger Zones)

-   Who can and cannot be unsupervised chaperones for the patient

-   What area such as parks, zoos, schools, and roller skating rinks are
    not appropriate without line-of-sight supervision

-   What steps should be taken to deescalate a situation

-   What places of employment and school are appropriate

Other items can be included in the safety plan to tailor it to the needs
of individual patients. One of the most important aspects of the safety
plan is to make sure everyone involved, therapist, case manager, school
personnel, employers, line staff, probation officer, and any others
provide input. All needed parties should be given a written copy of the
safety plan, and no significant changes should be made without
notification of all of those involved.

Helping the client identify danger zones and responding to them
appropriately is one of the salient features of offender therapy. Danger
zones involve the offender's target populations. For young children and
adults with developmental disabilities, this can be done very simply, e.
g. "Do not look at children. Do not watch children on television. Do not
watch, approach, or talk to children in the community."

The need to avoid danger zones should be reinforced on a regular basis.
For some young children or disabled adults, the use of "red" for
"unsafe" or "stop" and "green" for "safe" and "go" can be helpful. Tim
Kahn[^184]^,^[^185] has written two excellent books on prevention of
offending behavior. [Roadmaps for Recovery]{.underline} is very good for
young children and for use with developmentally disabled adults. Some
modifications need to be made when using this book with adults due to
some child-centered content. However, the concepts of prevention and
consequences are presented in easy to understand, concrete, and highly
useable ways.

The second book, [Pathways,]{.underline} is for young adults. It can be
used with higher functioning developmentally disabled adults. It walks
the patient through their offending pattern, victim empathy, and relapse
prevention.

Thought-stopping and covert sensitizations are techniques where, when
offending thoughts enter the patient's mind, they are to replace them.
The patient is instructed to use the term "Stop!" every time these
thoughts come into their head. For example, if a male patient fantasizes
about offending a young girl, he is instructed to replace the thoughts
with a chain of thoughts such as: "He sees the child, he begins to
approach the child, the police come and arrest him, he goes to jail,
everyone knows, and he feels ashamed and humiliated."

The basis for this approach is to ensure that fear, caution, and a
change in behavior will result. It is important when using these
techniques that the replacement thoughts be presented in very simple,
concrete terms that the patient understands. The thought-stopping and
covert sensitization techniques must be used every time the
inappropriate thoughts occur. Situations that trigger these thoughts
should be avoided as much as possible.

Fantasy logs are often required of sex offenders. These can serve useful
purposes in letting the therapist be aware of who are targets of
offending for the patients. This is critical information[^186]^,^[^187]
as fantasies may be part of rehearsing for future offending. However,
with people who persevere, which many with FAS/FASD do, asking them to
keep fantasy logs on a daily basis may actually increase the
inappropriate thinking. It is important for the therapist to check in
and track the fantasies, but not allow the client to focus on them.

Many times, behavioral management and supervision are more critical than
the therapy in ensuring a reduction in offending behavior. Constant
monitoring and supervision can ensure the patient has no access to their
offending populations. While such monitoring may be available in select
programs, it may not be possible for people in the community at large.

In the latter situations, where the offending patient is not in a
residential or monitored location, it will be critical for there to be
some form of monitoring and structure. Unfortunately, once a week
individual or group therapy or monitoring through probation may not be
enough to ensure community safety. This is an area where it will be very
important for professionals and families to work together to ensure the
safety and protection of all.

Depo-Provera is a synthesized female hormone that is commonly used for
long-term contraception. In a few reported cases of pedophiles and
rapists, it has been used to lower the level of circulating testosterone
and to reduce obsessive sexual thoughts.[^188]^,^[^189] There can be
serious side effects with use of this medication. It should be taken
only in rare cases where other methods have proved unsuccessful and
under the careful monitoring of a physician. It should also be used only
in conjunction with behavioral and other sexual deviancy therapy.

Structure and supervision appear to be the most useful tools in
preventing offenders from re-offending. This is the goal of the
Community Protection Program in Washington State. In this program, there
is 24/7 supervision with chaperones, Employment, community outings, and
schooling are supervised by the residential staff and others
pre-approved by the sex offender treatment provider. Appropriate
structure and supervision ensures the offender does not have any
unsupervised contact with vulnerable adults and children. For people
with FASD who are impulsive, such supervision and structure is a key to
ensuring there is no more offending behavior.

Any therapist working with offenders with FASD must be aware of the
concerns and special needs listed above. It is tempting to believe that
sexual orientation and impulsivity can be "changed" or "cured." In
reality, there is little empirical data to indicate such thoughts are
more than "wishful thinking." Professionals would do their patients and
the community a far greater service in ensuring that appropriate
structure, supervision, and monitoring of the offender with FASD is in
place. Open discussion of these concerns, along with appropriate therapy
and implementation of safety plans are not fail-safe measures. These
approaches could be positive starts to address these critical issues and
prevent more abuse.

Many adolescents and adults with FAS/FASD are lonely and may be
emotionally needy. Some one who "shows kindness" may also be able to
influence the person with FAS/FASD into an inappropriate sexual
situation. A means of preventing such exploitation may lay in teaching
social skills in a group setting.

One such program for developmentally disabled adults is in place through
Seattle Mental Health (SMH) in Seattle, Washington. SMH has relationship
groups which also discuss sexual issues and boundaries. They also have
dances. Activities such as these allow people with FAS to socialize in a
safe environment and learn social skills that may help protect them
within the community at larger.

[Additional Therapy Modalities]{.underline}

Throughout this manual, early identification and diagnosis has been
stressed. Early intervention is also as important. There are few, if any
specific therapeutic programs that have been developed specifically for
children, adolescents, and adults with FAS/FASD. There is, however, a
substantial body of literature from the field of autism and attention
deficit hyperactivity disorder. Included in therapeutic approaches from
the two fields are incidental teaching, discrete trial intervention, and
prompt and prompt fading.[^190]^,^[^191]

The approaches are defined as follows:

> [Incidental Teaching]{.underline}:
>
> This is "a process of getting elaborated language by waiting for a
> person to initiate a conversation" and a second "responding in ways,
> asking for more language from the first person."
>
> The notion behind this is to build language upon the patient's
> interests. If a child with FAS is in a room with objects they are
> interested in, the therapist or teacher can respond when the patient
> initiates conversation about the object that interests them. Response
> is thought to encourage response, thus enlarging language and
> connecting language to the concrete.
>
> In people of any age with FAS, such an approach may be helpful.
> Incidental learning can build on the gregariousness and chattiness
> exhibited by many patients with FAS. Encouraging focused and more
> structured responding through the natural interests or concerns of a
> patient can be applied in a wide range of settings.
>
> [Prompt and Prompt Fading]{.underline}[^192]
>
> Prompts are simply extra cues to aid people with disabilities such as
> autism in learning new skills. A prompt can be a variety of behaviors,
> verbal cues, or instructions that "increase the likelihood that
> children will make the correct response." In every day life, this
> means supplying the patient with input through social or verbal cues
> or modeling.
>
> The positive aspect of prompting is that the focus is on the
> acquisition of positive skills without loss of judgment or the
> application of negative consequences.

These approaches are very behavioral, but are grounded in the person's
daily environment. They may, at first, require additional efforts of
structure and interaction by the teacher and parent or caregiver.
However, if implemented early, it is hoped that through repetition and
success these interventions can provide a basis for appropriate behavior
across the lifespan.

Another positive respect of these approaches is their conduciveness to a
variety of settings and modifications as the patient grows. These skills
can be easily taught to anyone living or working with the patient.

**Transitions and Planning for the Future:**

*"Who will care for my adult child when I no longer can?"*

> *- a common refrain heard from the parents of adult children with
> FASD*

The next section focuses on transitions from age to age, and long-term
planning. The professional's role in addressing these areas is to
identify resources and to aid families in ensuring their children,
regardless of age, have structure, support, and

safety across the lifespan. To accomplish these goals, professionals
should strive to:

-   Anticipate crises situations and provide appropriate planning and
    early interventions. Most people are creatures of habit and routine.
    This is even more so with individuals with FASD. It is considered
    common sense and good parenting[^193]^,^[^194]^,^[^195]^,^[^196] to
    have structure and predictability in a child's daily life. Given the
    difficulties patients with FASD have in setting their own structure,
    it is even more imperative that structure and supervision is
    provided on a consistent and day-to-day basis for them.
    Professionals who assist parents and caregivers in designing
    structure and supervision can also aid in teaching them to coach
    their children through changes and transitions.

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-   Giving information ahead of time, walking children through
    transitions, and explaining what might be expected as a result of
    changes are all methods of helping patients deal with transitions.
    One of the most difficult challenges facing parents and caregivers
    is staying calm in times of crises. Professionals can help in these
    situations by providing alternatives for parents and caregivers in
    terms of responses to challenging behaviors. Options and flexibility
    can help both parents and patients reach their potential by reducing
    undesired behaviors and increasing
    successes.[^197]^,^[^198]^,^[^199]^,^[^200]

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-   Implement planning for future residential placement and financial
    needs. A common concern for parents and caregivers is who will take
    care of their child when they no longer can. The answer to this
    question will vary from patient to patient. Few states, in these
    days of shrinking resources, have programs that allow for the type
    of structure and supervision needed by adults with FASD. One of the
    most difficult problems is finding residential placements that are
    safe and secure. Professionals can help parents and caregivers
    identify possible resources for safe and appropriate living
    situations. Structure and supervision can be provided along with
    help in activities of daily living. A healthy and safe family life
    can be a protective factor across the lifespan.[^201] One of the
    possible options for care of adults with FASD may be the adult
    family home. These homes often consist of an adult with special
    needs living with a nonaffected couple and their children, other
    disabled adults, or a combination of housemates. Impediment to such
    placements can include a lack of funding, lack of availability of
    such living arrangements, available or resistance to living in such
    structure on the part of the patient. If these impediments can be
    overcome, however, such placements can offer a continued sense of
    family and support across the lifespan.[^202]

*"I want to buy my dad a video game. I think it costs the same as his
new car and his big pick-up truck. "*

> *- 14-year-old boy with FAS on buying Christmas gifts for his adopted
> father*

-   Safeguard financial resources. Mismanaging funds, giving away their
    money, and impulsive buying are often concerns expressed by parents
    and caregivers about the patient with FASD. If patients with FASD
    are not able to manage their funds, a guardianship for funds or a
    protected payee for patients might be helpful. Navigating the Social
    Security system or legal system to establish guardianship can be
    trying for families, particularly those under pressure from dealing
    with the needs of a child with FASD. Professionals can help provide
    guidance in attempts to get Social Security funding and in
    establishing a protected payee.

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-   Patient advocates can act to ensure that the recommendations
    described in this section are acknowledged and implemented. A team
    approach where everyone is working together on behalf of the patient
    can reduce the sense of being overwhelmed and decrease potential
    burnout. Problems can be shared and solutions generated. Advocacy
    can be at the individual, family, community, and political level. It
    can be from as small an issue as writing an IEP to as major an issue
    as acquiring Social Security funding and a place to live. Advocacy
    can be as simple as designing a daily schedule to as complicated as
    writing legislation to ensure FAS/FASD is considered developmental
    disabilities. Regardless, serving as an advocate to help plan and
    implement services is one of the most positive roles professionals
    can take in working with patients and families with FASD.

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-   Acknowledgement of the patient's limitations, strengths, and skills
    is something that may be overlooked. Building positive programs
    should be based on what people do **right,** not just the behaviors
    they need to change. Acknowledgement of the positive can cause a
    positive shift in how families view the patient and in how they view
    themselves.

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-   Acceptance of the patient's "world" is, at times, one of the most
    difficult tasks families, patients, and professionals face. It can
    feel, as one parent told the author, that it is an "acceptance of
    failure and shame. " In actuality, acceptance of who the person is
    may not be the same as acceptance of all of their behaviors. Every
    person has something to offer this world. People with FASD, despite
    the challenges they face and may offer, can be beacons to show what
    communities can accomplish to support all members of the community
    regardless of whether or not they have disabilities.

**Integration of Traditional Native Beliefs, Values, and Practices:**

One of the strengths inherent in many Native communities is their sense
of community.[^203] In the past, regardless of disability, all members
of the community were viewed as valuable. Traditional Native communities
consisted of extended kinship groups. The input of elders and adults for
their children and others in the community was desired and valued. In
many of today's Native communities, these traditions and values are
still in place.[^204]

However, given the complexity of the psychosocial issues facing
individuals and families with FASD, the community may not have enough
expertise and resources to address then all. In today's intricate world,
Native communities can bring forth their values and traditions and
incorporate them with the programs and psychosocial interventions
described above. A combination of these factors can bring structure,
gentleness, and hope to all of those affected by FASD.

**Psychosocial Needs and Service Matrix:**

At the start of Section I, a case study was detailed. Additional
information was given about Jerilynn at the beginning of this section.
Below is the psychosocial matrix for Jerilynn across the lifespan.
Please note the changes in needs and services required, as Jerilynn
grows older. With each section, a portion of the matrix will be
completed with the full series of matrices at the end of the manual.

**Figure 8**

**Matrix II:**

**Psychosocial Concerns for Jerilynn**

+----------------------------------+-----------------------------------+
| #### Ages 0-5                    | Neglect and abuse,                |
|                                  | distractibility, hyperactivity,   |
|                                  | withdrawing, poor language        |
|                                  | development                       |
+----------------------------------+-----------------------------------+
| #### Ages 6-11                   | Poor peer relations, anxiety,     |
|                                  | posttraumatic stress disorder,    |
|                                  | distractibility, hyperactivity,   |
|                                  | impulsivity                       |
+----------------------------------+-----------------------------------+
| #### Ages 12-17                  | Poor peer relations, anxiety,     |
|                                  | posttraumatic stress disorder,    |
|                                  | distractibility, hyperactivity,   |
|                                  | impulsivity, sexual acting out    |
+----------------------------------+-----------------------------------+
| #### Ages 18 and Up              | Poor peer relations, anxiety,     |
|                                  | posttraumatic stress disorder,    |
|                                  | distractibility, hyperactivity,   |
|                                  | impulsivity, sexual acting out,   |
|                                  | drug/alcohol use                  |
+----------------------------------+-----------------------------------+

**Psychosocial Services for Jerilynn**

+----------------------------------+-----------------------------------+
| #### Ages 0-5                    | Child protective services         |
|                                  | intervention, evaluations by      |
|                                  | developmental psychologist, early |
|                                  | childhood developmental           |
|                                  | specialist, psychiatrist for      |
|                                  | medication                        |
+----------------------------------+-----------------------------------+
| #### Ages 6-11                   | Adoption worker, individual and   |
|                                  | family therapist for behavioral   |
|                                  | management, psychiatrist for      |
|                                  | medication                        |
+----------------------------------+-----------------------------------+
| #### Ages 12-17                  | Individual and family therapist,  |
|                                  | psychiatrist, DDD case manager,   |
|                                  | adoption worker for child         |
+----------------------------------+-----------------------------------+
| #### Ages 18 and Up              | Individual and family therapist,  |
|                                  | psychiatrist, DDD case manager,   |
|                                  | drug/alcohol counselor            |
+----------------------------------+-----------------------------------+

**Section IV:**

**Family Issues and Needs**

*"Sometimes, we have to make new families. I lost the one I was born
into so I just made a new one from my friends. "*

> *- a 35-year-old man with FAS and also a trauma survivor*

*Jerilynn's birth family consisted of five siblings and her mother. Her
father was not known. Her mother was not able to work due to mental
health and substance abuse difficulties. The family was homeless at
times. It was due to these difficulties that Jerilynn was eventually
moved from her mother's home. Jerilynn had been placed into a relative
foster home which failed due to Jerilynn's birth mother interfering with
the placement. Finally, Jerilynn was placed with her adoptive family.*

*Her adoptive family had been aware of Jerilynn's issues and losses from
the time that she was placed with them. Her adoptive father was a
teacher and her adoptive mother was a nurse. As Jerilynn began to have
problems, her adoptive parents implemented family therapy and behavioral
programs. In spite of these behaviors, Jerilynn's behavior escalated out
of control and she ran away from home. Her parents made several attempts
to have her return home but without success.*

*Jerilynn's adoptive siblings were often resentful of the extra
attention she received from their parents. After two years of family
therapy, Jerilynn's brother and sister refused to participate any
longer. After Jerilynn left home, her siblings, both adoptive and birth,
no longer had any contact with her. Her adoptive parents, however, did
continue to attend court with Jerilynn and were supportive. A
significant issue arose when Jerilynn had her baby and her parental
rights were terminated. Jerilynn had believed her adoptive family would
adopt her child and was very angry when they did not do so. Finally,
after Jerilynn's last arrest, and the loss of four more children, her
adoptive parents made the decision to cut ties with her.*

Family issues have been touched on throughout this manual. The most
important issue when working with families affected by FASD is
establishing a safe and stable environment. This has, as noted, often
been the most difficult accomplishment to achieve. The problems detailed
below are only a few of those that affect families where parents may
have FASD, alcoholism, or both. Claudia Black and Melanie
Beattie[^205]^,^[^206]^,^[^207] among others detail the emotional and
social consequences of growing up in an alcoholic home. However, these
books do not address the difficulty of dealing with concerns due to
brain damage. Family issues related to FASD can include many of the
issues described below:

**Lack of Extended Family Support:**

Alcohol abuse can lead to parents becoming isolated and not able to
function in a manner that allows for adequate care. Many Native families
have been displaced from their ancestral homes. Such displacement often
leads to an increased risk of depression, alcoholism, and neglect and
abuse.[^208]^,^[^209] These issues put children and families at risk for
many of the psychosocial problems listed in the previous section.

With the displacement that often occurred from forced relocation, the
boarding school, multigenerational abuse and loss, many traditional
values and parenting practices were lost. Studies indicate that the
further from one's home and extended family Native people are, the more
they are at risk for problems.[^210] If they are more at-risk for
alcohol abuse, they are more at risk for producing children with FASD.
In addition, the lack of extended family can mean limited positive role
models for parenting.

In the past, Native children were raised within an extended family
structure. In some Native communities this structure still exists.
However, in others, it has been devastated. The lack of role models for
young parents or a shortage of sober cross-generational support can be
even more devastating. Substance abuse frequently crosses familial and
generational lines. If there are no sober relatives who can provide care
for the child, it is even more likely that the family may be split up
and the children placed into foster care.

**Financial Concerns:**

Generalizations should not be made about the socio-economic status of
people who are alcoholic. However, parents and patients with FASD in
clinical samples have frequently been from the lower socio-economic
class. There may be a sampling bias in the studies available, but it is
likely that fewer children from middle and upper class families are
placed into foster care. An assessment of financial resources needs to
be made at the initiation of any interventions. Limited financial
resources can contribute to the stress of families who are struggling
with the issues of alcoholism and meeting the needs of children affected
by FASD.

Financial issues can impact every aspect of family life. If the majority
of the family finances are going towards the purchase of alcohol and
other substances, there may not be enough money for food, shelter, or
clothing. Poor choices in how available resources are spent, are
commonly noted in families where there is significant substance abuse.
These choices can lead to neglect and CPS involvement, possibly
resulting in the removal of the children from the home.

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In other situations, parents may not have any employment or financial
resources. They may be on welfare or other disability monies. Due to the
"Welfare to Work" program guidelines, there are now limits on the amount
of time people can remain on welfare. Welfare-to-work programs are based
on the assumption that everyone can gain and sustain employment. Losing
welfare benefits after two to five years, without the benefit of Social
Security, often puts families at greater risk for financial stress and
pressure. Many people who have FASD, as well as those impacted by
alcoholism, may not be able to sustain employment, or complete training
without constant support and supervision. Without financial support and
resources, families are at risk for even greater pressures and problems.

**Parental Emotional Instability:**

Dual diagnoses, specifically alcohol abuse and a co-occurring mental
health disorder, are common.[^211]^,^[^212] Either one of these problems
can create difficulty and instability for parents and the entire family.
Adding FASD to these problems can make the situation even more unstable
and the risk of secondary disabilities greater. People newly in sobriety
are often encouraged not to make any decisions for the first year after
entering sobriety.[^213] While this may be the ideal, it may not be the
reality for parents. In fact, parents may be losing or regaining custody
of their children, changing residences, and dealing with many legal
issues. All of these factors can contribute to the risk of instability
in family life.

A chaotic home environment often results from mental health and
alcoholism issues.[^214] People with FASD have difficulty establishing
their own structure. When the pressure of parenting is compounded by
cognitive deficits or the consequences of alcoholism, it is apt to be
very difficult for there to be "smooth sailing" in the home.

The average number of children born to alcoholic women and those
affected by FASD is not known. Based on anecdotal information, it does
appear that women in these situations may be less likely to use birth
control, adequately care for their children, or manage their own
affairs.[^215]^,^[^216] In any family, the more children present, the
more parents have to adapt to a variety of children's needs, establish
more structure, and be flexible within that structure. Such practices
can be challenging for the most functional of people.

The potential for emotionally and physically absent parents is of
concern when there is alcoholism, mental health issues, FASD, or all of
these concerns.[^217] Parents who are affected by one or more of these
concerns may not be emotionally present for their children. They may not
be able to meet their own needs let alone those of one or more children.
Parents, at least those from lower socioeconomic levels, may be at more
risk to lose their children, creating another set of problems for both
the parents and children.[^218] There have been many situations in the
state of Washington concerning lawsuits over the possible devastation
that children face when removed from parental care and when having
multiple placements.[^219]^,^[^220] Certainly, children with FASD fit
into this risk category.

Parents with FASD may be emotionally immature and incapable of
recognizing the needs they or their children have. Proactive parenting
requires the ability to recognize such needs, maintain structure and
flexibility, and be responsive regardless of their own needs or
concerns. It is not that parents with FASD are deliberately neglectful
of their children, but rather they may lack the cognitive abilities
needed to provide for their families.[^221]

There have been studies from as far back as 40 years that demonstrate
the need for children to have adequate stimulation to grow and mature in
healthy ways. Without physical touch, stimulation, and nurturing,
children may be less likely to have healthy physical, emotional, and
social development.[^222]^,^[^223] People involved in alcoholism or who
have FASD may not be able to provide the appropriate levels of
emotional, physical, and cognitive stimulation needed to ensure healthy
development for their children. These factors may put their children at
risk for life-long social and emotional problems and cognitive and
social delays.

Given the short amount of time that FASD has been a focus of research
and public health interest, these concerns are more speculative than
definitive. However, there is enough strong concern and possibility that
further study is recommended.

Diversity of race, culture, and ethnicity among alcoholic and alcohol
abusing families is a fact of life. It is estimated that over half of
all women of childbearing years consume some level of alcohol.[^224]
These numbers are not simply reflective of those of lower income or
women of color. In actuality, FASD are concerns in any community where
women drink.[^225]^,^[^226]

Different families have different needs. Some families may not have
financial pressures. In fact, by virtue of being from middle or upper
class families, assumptions may be made that there is no alcohol abuse
in the family. Upper and middle class women may not be appropriately
screened for prenatal alcohol use.[^227]^,^[^228]^,^[^229] Children,
adolescents, and, later, adults born into these families may well have
the same learning problems, behavioral issues, social difficulties, and
employment problems as their less well-off counterparts. They may
receive a variety of diagnoses, none of which may identify alcohol as an
underlying causal factor. Failure to have an adequate, early diagnosis
is shown to be a factor in the development of secondary
disabilities.[^230]

Any child exposed to alcohol *in Utero* can be at risk. Any woman who
drinks during her pregnancy puts herself and any fetus at risk,
regardless of race, residence, or financial level. Without appropriate
screening and diagnosis, there may be a failure to acquire appropriate
services and interventions for either the child or the
family.[^231]^,^[^232]

The concerns described above are but a few that might affect the family.
Professionals working with families in this situation need to be aware
of the possibility of multigenerational problems and deficits. Many of
the interventions suggested in the previous section on psychosocial
needs apply when working with families affected by FASD.

**Interventions:**

*"Really, all I want is to know my child will be safe and healthy for
all her life. If there are people who can help me understand her needs
and make things better, I would be doing her an injustice not to make
use of such services. I am **way** past worrying about looking weak by
asking for help. "*

*- father of five adopted children with FASD*

Interventions by professionals for families that have FASD; parents,
children; or both affected with FASD should focus on helping reduce risk
and increase the chance of positive outcomes. This can be done through a
variety of avenues. Professionals should remain as flexible as possible
and be open to the use of multiple interventions. Services for families
can range from transporting the child and caregiver for a doctor's
appointment to arranging for respite care, and from providing family
therapy to identifying social support groups.

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Early identification and intervention are keys in:

-   Ensuring no more children are born with FASD; and

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-   Increasing the likelihood of a positive outcome for parents and
    child. [^233],[^234]

When providing services to families affected by alcoholism and FASD, it
is important to make sure services are given at a level that is
appropriate to the family. Expecting a parent with FASD to be able to
formulate and follow-through on complicated plans is not realistic or
reasonable. It is important for the professional to help the family
design and implement appropriate structure at a level the family will
ultimately be able to manage and sustain on their own.[^235]

Ensuring there is adequate parenting in the home can be a difficult task
for social workers and other professionals. A parenting assessment is
always indicated. In conducting a parenting assessment, items such as
overall cognitive abilities, coping skills, anger management, ability to
recognize their children's needs and meet these needs in an appropriate
manner should be addressed.

This is one of the most difficult areas for both families and
professionals. It touches the core of the human experience \-- the
raising of one's children. No matter what other factors drive the
situation, the best interests of the child must come first. The
difficulty comes in determining what this truly might be. Regardless of
situations of abuse and neglect, children generally remain emotionally
connected to their parents. The amount of bonding between parent and
child should be considered in assessing what are appropriate placement
options for the child.

Some parents with FASD may literally need to be parented as they parent.
If there are wrap-around resources that allow this to happen, it may
increase the possibility of parents with FASD keeping their children. If
parents are newly entering sobriety, the strength of such sobriety and
the extent of their sober support system should be considered during the
assessment process.

Helping parents and caregivers develop appropriate discipline practices
and proactive interventions is an area where professionals can be of
significant help to parents and families with children with FASD.
Developing a variety of interventions and ways to redirect children when
they are having difficulties can take patience, forethought, and
planning. Being able to control one's impulses and anger and act in a
thoughtful manner with their children are goals most parents have. Of
course, not every parent is fully able to meet this perfect standard!

However, parents with mental health concerns, sobriety issues, and FASD
may be more easily aggravated, more impulsive, less capable, and more
emotionally fragile. Because of these concerns, it is important that as
much support as possible be provided when these circumstances are
present. One method of addressing these concerns is through Family
Preservation Services or in-home therapy support. Teaching birth,
foster, or adoptive parents how to "parent differently instead of just
harder"[^236] can reduce frustration and increase success.

There is often a disparity between chronological age and the maturity
level of the child. Appropriate discipline should be directed at both
the emotional and chronological age of the child. An adolescent with
FASD may have the maturity, and understanding level of a six year old.
This can make the application of discipline confusing and difficult. In
this situation, discipline should still be concrete, simple, and
consistently applied. Professionals can aid families in identifying
interventions that are tailored to each child's level of cognitive
functioning and emotional and chronological ages.[^237]^,^[^238]

Professionals can recognize family and individuals strengths as well as
concerns. They may be more able to devise strategies and schedules to
specifically address challenging behaviors. A neutral, detached party
may be more able to facilitate implementation of discipline and positive
support programs.

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Obtaining subsidized adoption monies, if at all possible, should be a
priority when prospective parents make the decision to adopt.[^239]
Raising children affected by FASD is expensive with special services
needed across the lifespan. Subsidized care, whether it is for birth,
adoptive, or foster parents, should be in place across the lifespan. In
some states, subsidized adoption monies pay for counseling, medical
care, and respite care. All of these services can aid in families being
able to keep their children in their homes in a safe manner. Healthy
families make it far more likely that children will have healthy
functioning, regardless of whether the child has FASD. The more support
and structure families are provided, the more likely it is that the
outcome will be positive.[^240]

*"What do I do to make Sam stop barking like a dog?"*

> *- respite care provider on the phone about a 14-year-old boy with FAS
> after listening to him to bark for 8 straight hours.*

*"Tell him to meow like a cat. "*

*- parent's response*

Respite care is often cited as one of the most valuable services
families can obtain. Respite care provides parents with a break and
allows them to rejuvenate when they are tired or emotionally drained. It
can help in ensuring that parents can give more care and attention to
other children in the family. Someone who understands the needs of
children with FASD should provide respite care. The need for respite
care does not diminish as the child moves into adolescence and early
adulthood. In actuality, the necessity for family support grows, but the
accessibility of resources shrinks as the patient grows older. Helping
identify resources for respite care is an important way professionals
can aid families.

The adolescent with FASD may resist respite care. Professionals can help
facilitate respite care by identifying who within the family or support
network might be safe and accepted by the patient. If the adolescent has
sexual issues, it is especially important that there be no access to
younger children or vulnerable adults either in the family home or while
in respite care. The safety plan discussed in the last section should be
put in place at any residence where the adolescent resides.

While many of the life-threatening issues that face children with FASD
pass prior to the latency period, the need for preventive medical care,
dental care, and possible mental health needs do not. Ensuring that such
services can be obtained is an important concern that professionals need
to address with affected families. Professionals involved can help the
family identify providers who:

-   Take medical coupons or Medicaid

-   Understand the needs of patients with FAS

-   Can provide long-term care

-   Recognize, treat, and refer for mental health needs

-   Recognize and proactively address sexual concerns and safety

-   Recognize and refer for substance abuse problems, if appropriate

-   Screen for substance use during pregnancy

No one person can provide all of the services listed above. With a team
approach, however, it is more likely that the patient with FASD will
receive needed services.

Establishing a safe, stable, structured home at a level parents and
caregivers can maintain is crucial. A program that has been shown to be
helpful is the family preservation program. This program is funded
through the Washington State Department of Social and Health
Services-Division of Child and Families Services. It involves working
with high risk families to:

-   Identify strengths and concerns

-   Facilitate communication

-   Increase structure

-   Reduce stress

The advantage of this program is that it takes place in the home where
changes can be implemented in a concrete manner rather than expecting
people to understand abstract concepts and make changes on their own.

Helping the parents and caretakers to better understand the child's
methods of communication is important from early childhood on. Children,
even those who are nonverbal, are able to communicate in one form or the
other. It may be through hand signals, temper tantrums, turning away
from the parent, or being "demanding."

Dr. Donna Burgess, an FAS educational specialist, shares through her
trainings[^241] the example of a child banging a pencil on a desk. She
asks people to guess what message the child is attempting to communicate
through this behavior. The guesses frequently range from the child being
obnoxious, to bored, to needing to use the restroom, to deliberately
trying to irritate people around them. In actuality, a simple behavior,
such as tapping a pencil, can mean any or all of the above plus more.

Dr. Burgess' point is to not make assumptions about what a behavior
might mean but to interpret it in context and from the view of the child
at any given time. This sounds simpler than is actually the case. It
requires parents and caregivers to be patient, creative, and innovative.
Parents and caregivers with deficits of their own may have a difficult
time managing this. Professionals who actually go into the home and
observe the parent-child interaction may be able to provide more insight
as to what meaning any particular behavior might have. Modeling
appropriate behavior and means of acquiring and using information can be
where professionals are particularly helpful for families.

Adapting the environment to the child, rather than expecting the
opposite, can be done by:

-   Establishing, as much as possible, low to moderate levels of
    stimulation

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-   Using simple, concrete directions and consistent, limited rules

In-home providers or other professionals who are willing to make home
visits can review the home environment and identify where it may be
possible to change the level of stimulation. Sometimes something as
simple as substituting incandescent or halogen lighting for fluorescent
lighting, can reduce stimulation of the flicker and buzz of fluorescent
lighting. Such input may help providers more adequately meet the needs
of both the affected child and the rest of the family. Predictability
and consistency, which comes from such structure, are advantageous to
everyone.

Parents who are impacted by alcohol use, newly in sobriety, have mental
health issues, or a combination of these factors, may have difficulty in
determining what is an appropriate level of stimulation for children in
the home. Understanding the actual physical setup of the home, the
abilities of the parents, and needs of the child can facilitate a home
atmosphere more conducive to maintaining control and increasing feelings
of success for both the child and the parents.

By teaching parenting skills with pictures, demonstrations, and verbal
cues can be effective. For example, parents learning to draw a bath and
clean the child may need to be shown several times. Using drawings with
verbal explanations underneath each picture can be used for parents
having one or more of the difficulties just listed.

Visual and written cues can be used in a wide variety of settings. They
may range from the example provided above to a schedule that sets up
daily tasks and their frequency. As tasks and expectations change over
time, professionals working with affected individuals and families can
change these as appropriate. Different schedules and cues can be
designed for various family members. Taken together, however, they can
establish a more structured and calmer environment.

![](media/image27.wmf){width="5.097222222222222in"
height="3.234027777777778in"}

Set appropriate goals and expectations for both the parents and the
child, regardless of age, intellectual abilities, and emotional
maturity. These are points that have been made on several occasions.
Creating an atmosphere for any family to work and live in relative
harmony is a challenging task. Professionals can aid families

affected by FASD in achieving this task by:

-   Observing parent/child interactions.

-   Helping to design and implement appropriate behavioral management
    programs.

-   Providing a listening ear in times of frustration.

Family therapy should address the issues of loss, change, and anger that
can accompany the impact of alcoholism.[^242] The devastation of abuse,
neglect, and premature maternal death are not just concerns that impact
individuals. These losses take place in the context of families,
communities, and society. Many of these concerns are cross-generational.
Families impacted by alcoholism and FASD need to find ways to resolve
these concerns, particularly as parents or caregivers move into sobriety
and family dynamics change.

Professionals need to be aware of these possible changes. Family therapy
to address these issues may need to be facilitated. One approach is
through traditional psychotherapy, and traditional Native American
ceremonies and healing practices. Given some of the cognitive deficits
associated with FASD, other means of family therapy may be needed.
Antonia Rathbun[^243] discusses having family members each draw their
view of the family and issues and then discuss them together. This can
be a less threatening manner of presenting information and facilitating
change. Combinations of psychotherapy and behavioral management may also
be useful.

**The Role of the Professional:**

*"Flexible structure, and some humor, in me and people who work with my
child... those are the things I need. If I can't laugh, I will spend all
my time crying. "*

*- mother of a 5-year-old child with FAS*

The concerns and interventions listed above are only a few of the areas
where professionals can be of aid to affected individuals and families.
In actuality, professionals will have many roles to fill. They may serve
as a family therapist, a facilitator for communication, family advocate,
and a case manager.[^244]^,^[^245] As shown in the next two sections, so
do teachers, school personnel, probation officers, lawyers,
pre-sentencing investigators, and judges all have critical roles to
play. A team approach, such as those developed in Washington and
Alaska,[^246] has been shown to be more effective and useful than one
professional trying to manage all of the families issues on their
own.[^247]

Professionals may have multiple roles when working with families
affected by FASD. For example, a social worker may provide family
therapy, but also be involved in legal situations as an advocate. A
public health nurse may start out as a family health educator, but also
may serve as a facilitator for team meetings. Professionals working on a
team for affected individuals and families may want to consider having
quarterly meetings to ensure all involved are aware of:

-   Medications

-   Behavioral issues

-   Legal concerns and court dates

-   Changes in school or residential placements

-   Possible family concerns and changes

-   New members of the team or team changes

-   Health concerns that may need to be addressed

**Integration of Traditional Native Beliefs, Values, and Practices:**

For Native communities, family has been a mainstay for thousands of
years. Family, in Native communities can consist of the "nuclear"
family, extended family, or non-related people living together in a
family structure. The notion of kinship, while perhaps not as fixed as
in the past, is still a value that is of great importance to Native
people.[^248]^,^[^249] The fact that family remains so important can be
either a damaging or protective factor. Family ties that are strong and
sober can be a source of strength and support across the lifespan for
people affected by FASD.

Professionals working with Native families should be aware of these
values and strive to incorporate them as much as possible into treatment
programs. Sober extended family members providing positive role models,
sober living situations, and respite care for families affected by FASD
are of great importance. Therapy services for Native families could
include traditional healers as well as extended family members. A family
based therapy model can be consistent with the types of structure and
interventions traditionally used in Native families and
communities.[^250]^,^[^251]

As important as it is to be aware of the strengths of Native culture and
its value in working with families, it is equally crucial that
professionals do not make assumptions that every Native client or family
necessarily follows past cultural and tribal traditions. A thoughtful,
thorough assessment of the client's cultural, spiritual, familial, and
community identification should be made prior to implementing services
to the family. If it is important for the family to have their Native
culture and values incorporated into treatment, professionals can aid in
facilitation of such services. Any positive means that allow families to
stay together in a healthy manner should be considered and supported.

**Family Concerns and Service Matrix:**

At the start of Section I, a case study was detailed. Additional
concerns related to family issues were discussed at the beginning of
this chapter. Below is the family issues matrix for Jerilynn across the
lifespan. Please note the changes in needs and services required, as
Jerilynn grows older. With each section, a portion of the matrix will be
completed with the full series of matrices completed at the end of the
manual.

**Figure 9**

**Matrix III:**

**Family Concerns for Jerilynn**

  ----------------------------------- -----------------------------------
  Ages 0-5                            Parental substance use, lack of
                                      safe residence, familial financial
                                      stress

  Ages 6-11                           Adoption issues, unrealistic
                                      parental expectations, need for
                                      respite care

  Ages 12-17                          Respite care, family communication
                                      difficulties

  Ages 18 and Up                      Lack of residence, financial stress
  ----------------------------------- -----------------------------------

**Family Services for Jerilynn**

+----------------------------------+-----------------------------------+
| Ages 0-5                         | Foster care, family preservation  |
|                                  | services,                         |
|                                  |                                   |
|                                  | child welfare services            |
+----------------------------------+-----------------------------------+
| Ages 6-11                        | Subsidized adoption, behavioral   |
|                                  | intervention services,            |
|                                  | establishment of appropriate      |
|                                  | expectations, respite care        |
|                                  | provider                          |
+----------------------------------+-----------------------------------+
| Ages 12-17                       | Subsidized adoption, behavioral   |
|                                  | intervention services,            |
|                                  | establishment of appropriate      |
|                                  | expectations, respite care        |
|                                  | provider                          |
+----------------------------------+-----------------------------------+
| Ages 18 and Up                   | Patient out of the home           |
+----------------------------------+-----------------------------------+

**Section V:**

**Educational / Vocational Issues and Needs**

*Jerilynn was in Special Education services for the entire time she was
in school. Her IQ scores showed her to be in the borderline range with
difficulties in abstracting, reading, and math skills. She did not have
the capacity to translate her "book" knowledge into everyday life. The
school attempted to mainstream her on several occasions, but she was not
able to tolerate the level of stimulation in a regular classroom. She
would become frustrated and refuse to complete her homework. Her
adoptive parents felt Jerilynn had more ability than she was showing in
her grades and would provide tutoring after school.*

*Jerilynn was on an IEP during her time in school. She was furnished
with a part-time aide in school to provide support and supervision. As
she moved into adolescence, she became resentful of the supervision and
made attempts to evade it on a regular basis. She began to cut classes
and, finally, dropped out of school entirely. Her parents suggested
obtaining a GED, but Jerilynn felt she would fail at this, too.*

*After she was picked up on her last probation violation, Jerilynn did
enroll in GED classes and was working to complete them while
incarcerated. She was also requesting special vocational services to
have some vocational skills when she was released from jail.*

There have been many excellent educators who have written about ways to
address the educational needs of children, adolescents, and adults with
FASD.[^252]^,^[^253]^,^[^254] Educational concerns for children,
adolescents, and adults may have a different focus over time, but the
ultimate goal is the same - ensuring the person with FASD can live as
adequately, safely, and independently as possible in their world. This
section will explore many of these suggestions as well as the
professional's role in implementing interventions. Much of the
information in the following sections was synthesized and presented in
books and videos authored by Brady and Grollman and other
experts.[^255]^,^[^256] These principles have been refined and enhanced
over the years but the basic concepts remain the same: structure,
flexibility, helping children manage their behavior, and building links
to the children's family.

*"Communication and appropriate behavior are not add-ons to the
curriculum for children with FAS. They ARE the curriculum. "*

> *- Donna Burgess, 1992*

![](media/image28.wmf){width="3.7708333333333335in"
height="4.395833333333333in"}

**Preschool and Early Elementary Years:**

Brady and Grollman[^257] outline several concepts for working with
prenatally affected children that center around the teacher "building a
nurturing classroom. " Such a classroom allows children to fully
participate, feel valued, and increase their skills, building on their
potential.[^258]^,^[^259] Teachers do not make the diagnosis of FASD.
However, teachers often see the behaviors that are commonly present in
children who are prenatally exposed to alcohol. Ultimately, regardless
of the cause, challenging behavior still needs to be managed!

Creating a positive environment for preschool and elementary children
requires:

-   Setting up appropriate physical structure and ensuring safety.

-   Setting up limited, consistent rules.

-   Establishing appropriate expectations.

-   Encouraging cooperation and improved social skills through play.

-   Facilitating transitions.

-   Connecting classroom learning to the "real world".

-   Building strong links to families.[^260]

These principles, and the roles of professionals, have been described in
the previous sections. In reality, they are the guiding principles that
allow for healthy functioning both in the home and in school. Setting up
appropriate physical structure in a classroom can include using tape to
mark specific areas for play, learning, or privacy. Putting tables
together where children can engage, appropriately, with each other, but
also work on their own is often helpful. Breaking up long stretches of
floor space "can decrease the use of such areas as race tracks",[^261]
helping ensure children's safety.

![](media/image29.wmf){width="5.833333333333333in"
height="5.711805555555555in"}

As in the home, having consistent and limited rules at school provides
children a sense of structure and allows children to feel successful by
being able to adhere to these rules. Rules should focus on helping the
child feel safe and function within the classroom. Rules can be posted
in conspicuous places around the classroom and also on the child's desk.
For children with impaired reading abilities, having pictures of the
child participating in desired activities posted on a reminder board can
be helpful. In any case, the focus is on helping the child maintain
control over their behavior and function to their full ability.

Brady and Grollman[^262] also discuss the value of play for young
children as part of the curriculum. The material presented by Evensen,
Brady and Grollman reflect the point that Dr. Burgess[^263] makes where
"social skills and communication are the curriculum." It is felt that
play among preschoolers and younger elementary children facilitate
cooperation, communication, and social interaction. These are abilities
that are likely to serve in positive ways across the lifespan. Play can
also make the link between verbal and visual-tactile skills. Play can be
used to express feelings, values, and concerns. Children can be
encouraged to have activities and then share them with their peers.

Predictability, stability, and structure have been emphasized throughout
this manual as means of aiding children in reaching their potential.
Changes and transitions can cause disruptions in the school environment
and be upsetting to children. Making children aware of what changes
might be coming, providing them with ways of handling the change, and
reassuring them through transitions can reduce acting out behaviors.
Information can be as simple as telling the child to begin picking up
their papers or that they have five minutes left on a task. While
transitions in the classroom are much less life impacting than changes
that might happen in the home, facilitating changes through information
and preparation are still important.

Learning in the classroom can be connected to expectations and behavior
in the "outside" world. Play can teach children ways to communicate with
friends and family members. For example, teaching children to read
street signs as part of a play situation or game can help increase
reading skills and help make them safe. Teaching children through play
and other classroom activities can also help them recognize danger and
develop ways of avoiding potentially dangerous situations. It can aid
them in appropriately expressing emotions and developing positive
self-concept.

One example of how the classroom can be connected to life in the
community is that of the teacher who taught her students to read store
labels and purchase items instead of stealing them. This teacher set up
a mock store in the classroom where the children were given play money
to make purchases and pay for them prior to exiting the classroom area.
Then under careful supervision, this teacher took her students out to a
local grocery store to see how well they learned their lessons. The
hands-on, repeated learning paid off; as not one child shoplifted from
the store.

Consistency for children affected by prenatal exposure is one of the
most important parts of the environment. Connecting with parents can
enhance facilitating a child's growth and learning. Approaching schools
can be intimidating for many parents. For birth parents, dealing with
the grief, anxiety, fear of judgment, and decrease in their child's
potential can make dealing with the school system difficult.
Professionals working with (possibly) prenatally exposed children can
ease discomfort by focusing on the child's skills and exploring ways the
parents can support their child's learning.

Foster parents may be left "out of the loop" with school personnel due
to the possible temporary nature of foster placements. Regardless of the
length of time of the placement, foster parents need to be involved and
aware of the educational concerns and needs of the children in their
care. Adoptive parents should be as included in their children's lives
as birth parents. Prior to adoption, it is important that adoptive
parents be made aware of the possibility of prenatal exposure and what
services might be needed to address any special educational needs their
child might have.

*"It would help me as a teacher to know if a child I teach has FASD.
Many times, I see challenging behaviors I think are from prenatal
alcohol exposure. But... how do I ask a parent if they drank or are
drinking without offending them?"*

> *- Special Education teacher on her fears and frustration about
> working with prenatally exposed children*

A highly sensitive issue frequently raised by professionals is how to
appropriately and sensitively approach a birth parent who may be
continuing to abuse substances as regards to problems their child may be
having in school. The focus should continue to be on the needs of the
child and ways to aid the child to reach their full potential. School
personnel, however, may have to report child abuse and neglect, a
possibility that cannot be ignored where there is probable substance
abuse in the family.

A question frequently asked is how to approach parents whom teachers
suspect may be using alcohol or whose child may be prenatally affected
by alcohol exposure. There is no easy answer for this difficult
question. Focusing on the needs and what is in the best interest of the
child and aiding the parents in establishing structure can be positive
interventions for all involved. School personnel, who approach parents
and children from this angle, may be able to frame problems as
opportunities for growth for everyone in the family. Despite the fears
that many professionals have of offending parents, parents who have been
involved in substance abuse may feel a sense of relief when the issue is
finally dealt with in an honest manner.

Teachers who are mandated to report child abuse sometimes feel they walk
a fine line between being advocates for the children in their classroom
and reporters for child welfare services. Taking a stance in the best
interest of the child is crucial. At the same time, teachers still need
to be sensitive to issues of guilt, resentment, and fear that parents
can feel when confronted on these concerns.

Parents who have a difficult time following through on programs for
their children or understanding information given by teachers may not be
"lazy," or "uninterested." In reality, the parents may be struggling
with difficulties caused by the consequences of their own prenatal
alcohol exposure. Information can be provided in a simple, concrete
fashion and in a manner that encourages open dialogue.

Brady and Grollman[^264] make the point that many teachers may have
difficulty feeling sympathy for parents who are abusing substances.
Remembering that a parent may also be affected by prenatal alcohol
exposure and also recalling that alcoholism is a disease, not a moral
issue, can help school personnel remain compassionate if not completely
neutral. It can be difficult to maintain a nonjudgmental view of parents
when children are suspected of being abused or neglected. Yet, it is
precisely this non-judgmental attitude that needs to be maintained in
order to provide a safe place for parents and teachers to collaborate in
meeting the needs of children.

Up to this point, the focus has been on behavioral concerns and
educators connecting with parents. Preschool and elementary school is
where academic learning commences. Many children with FASD appear to be
of at least of average intelligence in preschool and the early
elementary years. Basic academic skills are the focus at this time such
as word recognition, simple reading, or math skills. Information should
be presented in a multimodal fashion and in small pieces. Use of color
and visual cues is helpful to most children, but particularly to those
with the learning difficulties commonly associated with FASD. Keeping
things simple is often quite useful. For example, rather than fifty math
problems on a page, putting five problems on a page for ten pages can be
less overwhelming for children.[^265]^,^[^266]

As with mental health counseling, each child should be assessed and a
program designed for the child's special needs. For many children,
academic interventions are formalized through the Individual Education
Plan (IEP). This plan details the child's strengths, concerns, and what
services will be needed to address their needs. The IEP often
accompanies the child across their school years, being modified as is
appropriate. The IEP allows communication between school personnel and
from teacher to teacher over the years. For children prenatally exposed
to alcohol, IEPs should be implemented as early in the child's school
career as possible. Developing an IEP can encourage communication and
cooperation between parents and teachers. For an example of an IEP and
its content see Appendix 6.

**Later Elementary School Years:**

The principles outlined above are apt to be useful throughout the
child's schooling. As the child moves closer to the middle school years,
expectations increase and so can the child's frustration. Studies have
shown that expressive and receptive language skills are areas that are
often negatively impacted by prenatal alcohol exposure. These skills
become more important in the upper grades as more self-expression is
required in the classroom. Spelling requires the child to remember and
use information, generalize and discriminate between sounds, and produce
a response.[^267]^,^[^268] Verbal skills, overall, tend to slide at this
age, while tasks using visual-spatial skills may show less of a decline.
The difference between verbal and performance skills is commonly
reflected in IQ scores and does not decrease as the child grows
older.[^269]

*"Learning my times tables is the hardest thing I have tried. I am 15
and my 5-year-old sister does her times tables better than I can. But, I
can read better than her. "*

*- 15 year old boy with FAS*

Math is a common area where deficits associated with prenatal alcohol
exposure begins to be noticeable in the later elementary years.
Recognition of abstract principles underlying math problems may also be
outside the grasp of many children with FASD. Division and
multiplication are complex tasks requiring abstracting abilities,
memory, and recall. Memorization of the multiplication tables can be an
insurmountable task for children with FASD. In the early years of
elementary school, simple addition and subtraction can be linked with
visual cues, e. g. three blocks plus four blocks, two apples minus one
apple. The more abstract math becomes, the fewer visual cues can be
used. Without methods to translate math into "small pieces" or connect
it to concrete, visual cues, the more challenging arithmetic may be for
children affected by FASD.[^270]^,^[^271] Individualized programmed
instruction such as computer assisted learning and specialized learning
materials have been used successfully with children who have other
development disabilities and may be helpful for children with FASD.
These programs:

-   Assess the child's current skill in the area

-   Provide graded teaching and exercises

-   Provide immediate reinforcement for correct responses

Reading skills may continue to be higher than math or spelling skills,
but the ability to comprehend what is being read may be compromised.
Comprehension of verbal materials becomes more important as the child
progresses in school. Written materials are major sources of information
for people in contemporary American culture. Not being able to
comprehend and use reading materials on a daily basis can become
incapacitating for children with FASD.

Increasing problems in academic learning can lead to increased
frustration in both the school environment and the "real" world.
Impulsivity, attention deficit problems, and lower abstracting abilities
can interfere with learning. Social difficulties, as discussed in the
previous section, may be more pronounced in the school setting. Social
isolation, being "different," having poor communication skills, and
failing to progress in school may make school an unpleasant experience
for the child with FASD.[^272]

According to longitudinal studies performed by Dr.
Streissguth,[^273]^,^[^274] the academic ceiling is often reached in
late elementary or middle school. This ceiling is commonly measured as
being at the fourth grade for reading and the third grade for spelling
and arithmetic. Lower academic abilities are seen in children and
adolescents with FASD regardless of IQ or physical appearance. The
child's intelligence and normal physical characteristics may cause
educators to overestimate the child's abilities. The difference between
academic achievement and IQ is consistent with the differences often
seen between intellectual abilities and adaptive behavior. As an
example, children may have a higher intellectual capability than their
ability to function in a social setting.

These concerns need to be addressed in a proactive manner. It is
important to recognize the differences in academic, social, adaptive
behavior, and intellectual skills between children with FASD and their
classmates. Assessments should be done on a regular basis to track the
child's progress in the areas noted. The results of these assessments
can guide the type of interventions and special services needed.
Progress can be measured and additional interventions provided as
indicated by evaluation results. Assessment and screening tools that may
be helpful are detailed in Appendix 5.

Interventions in the child's academic career often include special
education and tutoring services, and expanding the focus from academic
skills, to daily living and vocational skills. As the child gets older,
academic learning should continue to be included within functional
skills. For example, learning how to read and use a cookbook, reading
labels on grocery products, and being able to use a calculator and make
change are all useful tasks. As the child grows into adolescence and
beyond, the ability to make sense of one's world is more crucial.
Classroom learning that integrates these skills can aid in the client
gaining as much independence as possible.

As Dr. Burgess[^275] has indicated, "appropriate behavior and
communication skills are the curriculum for children with FAS. " The
need for positive communication abilities and being able to control
one's behavior are even more crucial in adolescence than early
childhood. Children and adolescents with FASD do not just demonstrate
problems with academic skills. They also struggle with healthy
relationships with their peers. Arguing, aggression, being easily
influenced in negative ways, and disrupting class are common concerns
that lead to classroom problems and possibly the suspension of the
student from school.

*"I'm not arguing with my teachers. I'm just trying to prove my point!"*

> *- 12 year old girl with FAS on being escorted to the principal's
> office for the fifth time in a week*

One of the primary goals at this point is to retain the child in school.
School provides the structure and supervision that are necessary for
children with FASD who are approaching adolescence and the stresses and
dangers that this period in life entails. Given the psychosocial and
academic problems commonly displayed by children and adolescents with
FASD, it is important that preventive steps be taken to reduce
frustration as well as subsequent resistance to attending school. Being
aware of the student's strengths and areas of concerns can provide
information allowing for changes in approaches to learning. Providing
vocational and social skills training that allows for reduction in
frustration can help students feel more successful, encouraging them to
continue in school.

Children with FASD who made it through the elementary grades in a
typical public school setting may required special learning environments
as they grow older, e. g. schools with more structure, smaller
classrooms, greater focus on social and life skills. Such a private or
alternative school should be made available to children with FASD just
as they are now made available for children with other disabilities.

Conflict resolution skills and involvement in extracurricular activities
are experiences that might be of value for children of all ages. For
older child with FASD, these are steps to help the child feel mastery
over their environment and begin to have more positive relationships
with their peers. Being able to adequately communicate needs and
feelings is a valuable skill for all ages. Being able to participate in
sports, arts, social clubs or music, add joy and enrichment to their
lives.

**Middle School Years:**

The move from elementary school to middle school can be a difficult
transition. Children frequently go from one class, six hours per day, to
six classes one hour per day. This requires children to make several
transitions per day. They have to remember the order of their classes,
where in the school each classroom is, and where the student sits in
each room. This may appear to be a simple task, yet for children with
memory problems and those who are easily distracted, making multiple
changes during a day can be somewhat disconcerting and difficult.

Steps that can aid in such transitions can include having a mentor, a
responsible older child, who can walk the child with FASD from classroom
to classroom. Having a nametag attached to the desk and other visual
reminders of limits and rules are helpful.

Patricia Tanner[^276] discussed the need to focus on flexible structure
and consistency in the classroom. These recommendations echo those from
Brady and Grollman.[^277] Dr. Streissguth suggested that the teacher
assume the role of active listener and advocate, and make the classroom
a safe place for the child on an academic and interpersonal level.[^278]
These are all approaches that are helpful in increasing the likelihood
of school success in the elementary and middle school years. They are
also helpful as the student enters high school.

**High School Years and Beyond:**

Many schools now incorporate vocational training into their high school
curriculum for students with special needs. Additional accommodations
allow certain students to remain in high school up to the age of 21.
Extra school years can help provide continued structure and consistency,
as well as allowing for more time for the student to mature. Linking
high school to vocational training can prepare for stepping from school
into employment and more independence. Vocational training should occur
after an assessment is completed and the adolescent's interests, skills,
weaknesses, and concerns are identified. A placement that addresses the
health and safety needs of the patients as well as provides a place to
safely learn and practice vocational skills is the ideal.

Gaining employment may or may not be an issue for the adult with FASD.
Sustaining employment, however, is often a challenging situation for
people with FASD.[^279] If the job requirements are too confusing or
there is not enough time for the adult with FASD to learn these
requirements, frustration can set in. Poor social skills or
communication difficulties can lead to conflict on the job, and thus,
termination of employment often without the patient understanding the
reasons this occurred. Many people with FASD need constant support at
the beginning of employment. Job coaches can eventually be phased out,
if appropriate, and replaced by natural supports. It is important to
clarify the roles of the job coach and supervisor to ensure conflicting
and confusing information and directions are kept to a minimum.

![](media/image30.wmf){width="4.804861111111111in"
height="3.9118055555555555in"}

*"I just want to spend my first two paychecks. You can pay my bills for
me, Dad. "*

*- 17-year-old girl upon getting her first job*

While structure is important in allowing patients with FASD to achieve
their full potential, sheltered workshops may not be the best employment
settings. A combination of structure and challenges, building on the
patient's strengths, is the ideal. Such placements, however, may not be
easily found. Below are some of the ways professionals can be useful in
developing vocational training and placements for patients with FASD.

**The Role of the Professional:**

There are several roles that professionals can take in educational and
vocational training.

[Educators:]{.underline}

It is a misconception that all children with FASD need to be enrolled in
special education services. In actuality, there is a very wide range of
abilities in patients with FS/FASD. The role of the educator can
include:

-   Assessment of educational needs

-   Assessment of student skills

-   Development of educational programs

-   Student/family advocate

Assessment of educational needs should include the level of the
student's social and communication skills, emotional maturity,[^280]
verbal and comprehension abilities, and language usage. It is vital to
assess strengths and concerns as programs should be built on the
student's skills. A multi-faceted ecological evaluation should form the
basis of the educational program as well as be a marker for the child's
progress through school. In addition to academic skills, behavioral
assessments should also be conducted. Educators who can provide such
assessments and develop corresponding programs are valuable assets to
their students.

Cooperation between parents and educators is a key factor in ensuring
that students reach their full potential. Streissguth[^281] and others
recommend sharing testing results with parents. This is the same type of
"bridge" that Brady and Grollman[^282] recommend. Prior to any
assessment, parents should be informed that such assessments are being
conducted and consents signed. When sharing the results of the
evaluation and assessments, educators should keep terms simple and
concrete. Recommendations should be made in ways that connect the home
to the classroom. Encouraging parents to ask questions and provide input
are valuable tools for developing positive relationships with parents.

Many older children, adolescents and young adults with FASD, recognize
their differences from their peers, but often do not have a clear sense
of how to express their needs and feelings about these differences.
Educators can be sensitive to these needs and help struggling students
to focus on their skills, strengths, and assets. Brady and
Grollman[^283] discuss creating "morning circles" where children are
encouraged to talk about their lives and share things that make them
special and unique. These suggestions are not helpful to just young
children; they are recommendations that can be used with students of all
ages.

Development of programs that emphasize communication and social skills
within the context of the academic setting is another way educators can
be supportive of students with FASD. This often requires educators to be
creative and concrete at the same time. Identifying a list of areas
where students will need positive skills, e. g. shopping, cooking and
social activities are often helpful. Incorporating these areas into the
IEP can be an important part of addressing needed life skills.

Earlier, it was suggested that assessment results be shared with the
parents. It is also important that parents share their areas of concern
with educators. If there are problems that the parents or caregivers
note in communication and social skills or other areas, parents and
educators can work together to help develop programs for remediation.
This approach encourages structure and consistency, aiding the child in
increasing their functioning. The steps described below are part of the
partnership and teamwork between professionals and caregivers that has
been stressed throughout this manual.

[Vocational Counselors:]{.underline}

Vocational counselors are in a prime position to be of support to
adolescents and adults with FASD. A manual specifically intended for
vocational and rehabilitation counselors were developed by LaDue,
Schacht, Tanner, and McGowan; and details vocational assessment and
intervention.[^284] The role of the vocational/rehabilitation counselor
is to:

-   Assess the student's vocational needs

-   Assess skills that can be used to help develop job training programs

-   Aid in placing the client in an appropriate vocational setting

-   Serve as part of the team for wrap-around services

Vocational counselors have specific skills that help determine what
their clients need to succeed in the job market. People with FASD often
have difficulties adapting to the work environment. Anecdotal
information presented by Kleinfeld[^285] and Streissguth[^286] describe
the frustration commonly felt by people with FASD when they are in the
working world. These stories often speak of the person with FASD:

-   Having difficulty remembering and following directions

-   Not comprehending the subtleties of tasks

-   Not understanding the social aspects of their jobs

-   Not being able to organize themselves to arrive at work every day

-   Being confused by directions that might be given by different
    supervisors

-   Being impulsive and taking on tasks that are outside of their job
    duties

-   Not fully understanding private vs. public property / taking or
    "borrowing" things from job site

Vocational counselors working with people with FASD can help facilitate
communication between the client and supervisors in the job environment.
Setting up structure on the job site, establishing clear job duties, and
keeping expectations reasonable for both employer and employee are ways
the vocational counselor can help increase the probability of successful
job placements.

Students with FASD often reach their academic ceiling at an early age,
but can still benefit from school-based learning.[^287] Making the
vocational counselor a part of the service team in high school can begin
facilitation of vocational training that will aid the student across
their lifespan. Vocational training needs and services should be
incorporated into the IEP. Information from the client's IEPs can be
shared, ensuring a smoother transition from school to work. Shifting the
focus from academic to vocational training can reduce the frustration
many people with FASD experience in the school setting.

Vocational counselors, prior to placing clients into any specific job
environment, should have an awareness of the special needs of the
individual with FASD. The needs of the individual for structure, verbal,
written, and visual cues and directions should be assessed prior to the
client being placed in the job environment. Such an assessment can
include:

-   An IQ test

-   An academic skills assessment

-   Observations of the client in a job training setting

-   Assessment of communication and social skills

-   Functional testing to identify level

Finding what areas of interest the client has should be considered when
placing the client in any job setting. Helping the client maintain
interest in their job is important but also one that is difficult.
Attention and concentration skills are often limited in people with
FASD. Finding a type of work that is built on the client's interests,
coupled with either a job coach or natural support, can increase the
chances of the client succeeding.

In summation, educational issues for the person with FASD do not subside
with age. Indeed, the need for appropriate and long-term vocational
training continues well into adulthood. Specialized and subsidized
programs that include teacher's aides, linkages to the child's/adult's
home, and focus on the client's strengths make it more likely that the
client will acquire the confidence and skills to progress and thrive.

**Integration of Traditional Native Beliefs, Values, and Practices:**

Traditional learning often took place through stories, legends and oral
history. [^288]^,^[^289] Visual learning was also important given the
hunting, fishing, and subsistence living on which most cultures relied.
Language and memory were important, but reading was not a traditional
skill. In the past two hundred years, particularly in the last 100,
reading became more critical for survival. However, it appears that many
Native children still learn through oral and visual means versus
reading. This skill difference can lead to lower scores on the verbal
portions of IQ tests and other standardized tests that rely on reading.
Any assessment should include consideration of cultural factors.[^290]

When working with Native children, it is important that learning style
be considered and included in any educational program. It should not be
assumed that Native children are less intelligent or capable than their
non-Native counterparts simply by virtue of their learning styles. For
Native children with FASD, incorporation of traditional art skills can
be helpful, e. g. beading and drawing. These skills encourage manual
dexterity, coordination, creativity and planning. In some Native
communities, elders are brought in to teach these skills. Still other
communities have immersion schools, which teach only in the Native
language.

An academic program that honors the child's culture, encourages
multi-sensation learning, promotes inherent skills, and partners with
the community can accomplish what Brady and Grollman,[^291]
Evensen,[^292] Burgess,[^293] and Tanner[^294] all endorse through
positive educational principles. Educational programs that are based in
the community and build bridges to the community can also help ensure
inclusion of families and reduce the anxiety and fear many parents may
feel when dealing with the school system.

**Educational/Vocational Concerns and Service Matrix:**

At the start of Section I, a case study was detailed. Additional
concerns related to family issues were discussed at the beginning of
this chapter. Below is the educational needs matrix for Jerilynn across
the lifespan. Please note the changes in needs and services required as
Jerilynn grows older. With each section, a portion of the matrix will be
completed with the full series of matrices finished by the end of the
manual.

**Figure 10**

**Matrix IV:**

**Educational/Vocational Concerns for Jerilynn**

  ----------------------------------- -----------------------------------
  Ages 0-5                            Appropriate preschool placement,
                                      articulation problems,
                                      distractibility

  Ages 6-11                           Verbal learning deficits, attention
                                      and concentration problems
                                      affecting school performance

  Ages 12-17                          Verbal learning deficits, attention
                                      and concentration problems
                                      affecting school performance,
                                      patient cutting school and finally
                                      dropping out, defiance of teachers,
                                      refusal to complete work, deficits
                                      in daily living skills

  Ages 18 and Up                      Patient has no vocational skills,
                                      refusal to participate in DVR
                                      program
  ----------------------------------- -----------------------------------

> **Educational/Vocational Services for Jerilynn**

  ----------------------------------- -----------------------------------
  Ages 0-5                            Specialized preschool, speech
                                      therapy

  Ages 6-11                           IEP focusing on academic and daily
                                      living skills, social skills
                                      training

  Ages 12-17                          Vocational training and daily
                                      living skills training,

  Ages 18 and Up                      Vocational training and daily
                                      living skills training, GED classes
  ----------------------------------- -----------------------------------

**Section VI:**

**Legal Issues**

*"Why waste my money buying things when I can steal them?"*

*- 17-year old girl with FAS after being arrested for shoplifting*

A major issue facing people with FASD and their families is the
reportedly high rate of legal involvement for a variety of
reasons.[^295] Legal issues range from custody concerns such as
guardianship to criminal issues as severe as homicide.[^296]^,^[^297]
The type of legal issues will vary from patient to patient and change
across the lifespan. Another legal issue that has been raised includes
wrongful adoption where adoptive parents were not informed of their
child having FASD.

Criminal issues and mitigating circumstances may include:

-   Being charged with any crime

-   Competency and restoration of competency

-   Capacity

-   Diminished Capacity

-   Decline/remand

-   Mitigation

Civil legal issues may include:

-   Wrongful adoption.

-   Parenting/custody evaluation

-   Termination of parental rights

-   Assignment or removal of guardianship/protected payee

-   Adoption

**Criminal Issues Associated with FASD:**

A myth has been conceived and nurtured that people with FASD, simply by
virtue of their disability, have a high likelihood of being involved in
legal problems. Clinical studies such as Streissguth, et. al.[^298]
suggests a higher risk of such problems. In reality, the actual number
of people with FASD having such problems is not known. What is clear,
however, is that children, adolescents, and adults with FASD may be more
easily led, subjected to negative influences, and unable to recognize
the risks of certain behaviors. One of the major concerns when an
adolescent or adult with FASD is arrested, is the risk of them providing
incriminating and possibly false information to authorities.

![](media/image31.wmf){width="3.472916666666667in"
height="3.1131944444444444in"}

People of all ages with FASD frequently have limited comprehension of
social rules and expectations. They may not understand complex
questions. They may not comprehend the notion of rights or the
consequences of waiving their rights. On more than one occasion, the
author has been involved in situations where an adolescent with FASD was
arrested and "confessed" to a number of crimes because the police stated
the person "could go home if they told the truth. " This situation has
been known to occur with many youth, who are questioned without a parent
or advocate.

It is strongly recommended that children, adolescents, and adults be
reminded not to talk to the police without their parents or caregivers
present. This is often in contrast to the usual idea of "police being
our friends." In actuality, a balance needs to be struck between
teaching the person with FASD to protect their rights while still
viewing police as helpful. Developing a plan that provides the patient
with a means of responding to the police should the need arise, should
be developed in early childhood and revised as needed as the child grows
older.

For example, one youth with FAS was alleged to have done inappropriate
touching with a younger boy while in the school restroom. Police
questioned the youth at school without his parents being present. During
this questioning, the youth "admitted" he had sex with dozens of other
boys. He was later charged with multiple counts of child molestation.
After a more thorough investigation, it was revealed that the youth had
not had any time alone with any child and, in fact, had no history at
all of inappropriate sexual behavior.

As a result of this situation, the youth did receive counseling along
with his parents. During the therapy sessions, a plan was made whereby
the youth was given a written card to give police if he was ever
stopped. The card provided the names and cell phone number of the
youth's parents. It was affixed to the youth's identification card so
that the youth would not have to remember to give it to authorities.
Simple plans like this are vital to protect the safety of the client and
their rights.

[Competency:]{.underline}

Earlier in this manual, the brain damage associated with prenatal
alcohol exposure was discussed in detail. This damage results in lowered
abstracting abilities, impulsivity, and a lack of comprehension of
social rules and expectations. These are all skills that are needed to
understand legal proceedings, charges, and to aid in one's defense in a
reasonable manner. In many states, these are factors in determining if a
client has the competency to stand trial. Competency evaluations are
generally not conducted on children over the age of 12. They are usually
done if there is a question as to the cognitive abilities of defendants
over the age of 12 years and their ability to meet the criteria
outlined.

Competency is crucial, as states and the federal government statutes
commonly prohibit trying and convicting people for the commission of an
offense if the defendant is incompetent.[^299] Incompetence arises as a
result of a mental disease or defect. This could well be the case with a
defendant who has FASD. The concern is that many people, particularly
those with FASD, are not identified. Due to the often verbal, gregarious
manner with which many individuals with FASD present themselves, they
may appear more capable than they actually are. Thus, they may be found
to be competent in spite of significant brain damage.

For professionals conducting competency evaluations of people with FASD,
it is important to detail for the court how the brain damage associated
with this birth defect can compromise abstracting abilities, intent,
planning, comprehension, and accurate reporting. In some cases, a person
with FASD may be marginally competent. They may be able to understand
the charges against them, e. g. stating that assault means hitting
someone. The defendant with FASD may also be able to state that going to
court means that "they may have to go to jail. " They may not, however,
be able to accurately report their history, their actions, or provide
their attorney with other needed information. Simply knowing who their
attorney is or what the judge's role is does not constitute competency.

Washington State has a "competency restoration"[^300] program for people
who have been found to be incompetent. They attend a program intended to
prepare them for trial. This program consists of classes where
defendants are taught about charges and legal proceedings. At completion
of this course, the defendant is re-evaluated for competency. One of the
concerns about such "competency restoration" is that it appears to be
more of a memory course than cultivating true understanding of legal
proceedings. Simply being able to repeat what one has heard does not
imply comprehension. This is particularly true for people with organic
brain damage such as those with FASD.

Professionals working in this area should be careful to assure that each
part of the competency criterion is addressed separately. The
defendant's ability to understand the abstract concepts is important
versus their ability to simply repeat what has been told to them. If the
defendant has deficits in their abstracting abilities and comprehension
skills, it is crucial that these deficits be conveyed to the
court.[^301]

[Capacity:]{.underline}

Capacity is generally based on age and may be similar to the guidelines
for competency. In general, children under the age of eight are not
considered able to understand legal charges and proceedings. Between the
ages of eight and twelve, there may be questions as to whether the child
has these abilities. If an individual with FASD is arrested, it is
important that a capacity evaluation be done to address the issues
listed above.[^302] This is particularly important as many older
individuals with FASD may have the comprehension capacity of a young
child.

[Diminished Capacity:]{.underline}

Diminished capacity is where the defendant's ability to form intent is
impaired by a mental disorder or defect.[^303] This can include a
thought disorder or organic brain damage or a combination of the two.
Many defendants with FASD have both conditions. In performing a
diminished capacity examination, it is important that all of the
following elements be evaluated:

-   Family and personal history of mental disorders or defects

-   Family history of alcoholism

-   History of prenatal alcohol exposure

-   Mental health diagnoses and any treatment

-   Defendant substance abuse

-   History of head trauma

-   Any other evidence that suggests organic brain damage

For defendants with FASD, it is important that all of these factors be
considered along with the deficits in judgment, behavioral control,
understanding of cause and effect, and abstracting problems that are
characteristic of their disorder. All of these factors enter into
whether a person can form intent or if that ability is impaired.

[Decline/Remand:]{.underline}

Several states now have legislation that detail when a juvenile should
be charged as an adult. For many states, that decision now rests in the
hands of the prosecutor. For example, in some states, if a youth is
under the age of 18 and is charged with second or first-degree murder,
they are automatically charged as an adult. In other cases, there may be
an evaluation conducted to determine if it is appropriate to retain the
youth in the juvenile system or refer them to the adult justice system.
If a decline hearing is recommended, the following should be included in
the evaluation:

-   Level of risk the youth presents

-   Family support, structure, and stability

-   History of previous legal problems

-   Susceptibility to the influence of friends

-   Previous participation in services

-   Intellectual ability

-   Ability to understand cause and effect

-   Capability of being maintained safely in the community[^304]

These factors will vary from state to state. In some states, decline
hearings have dropped significantly due to the changes in charging
practices. Factors that are often used to determine if a child should be
declined may be tilted against the defendant with FASD. Many children
with FASD come from families that have little stability. They are often
negatively influenced by peers and have limited ability to comprehend
cause and effect. It is possible that, due to these factors, defendants
with FASD may well be at increased risk to be declined into the adult
justice system.

[Mitigation:]{.underline}

Mitigation is a process by which certain factors are introduced to the
court to decrease or modify the sentence received by the
defendant.[^305] This is the one area where the FASD diagnosis has been
successfully used in legal situations. The manifestations of brain
damage that are resultant from prenatal alcohol exposure have been
described to the court as a source of difficulties leading to legal
problems. An evaluation that details mitigating factors should include
those listed in the previous discussions. It should also provide a plan
as to what services should be used to address the needs of the
defendant, rather than simply stating a lower sentence should be
imposed.

**Civil Issues Associated with FASD:**

[Adoption:]{.underline}

Many children with FASD enter foster care and may be placed for
adoption. If this is the case, it is critical for the prospective
parents to have as much information as possible about the short and
long-term needs of the child.

[Wrongful Adoption:]{.underline}

*"Not being told your adopted child has FAS handicaps everyone in the
family."*

*-Adoptive parents of two adolescent children with FASD*

In the past several years, there have been multiple lawsuits against
states and adoption agencies where children were placed for adoption
with families, without them being adequately informed of the health
issues and diagnoses of their children.[^306] Failure to inform
prospective parents that their children had FASD is alleged to have led
to family problems, legal issues, and a high need for services. In some
cases, had the adoptive families been aware, they might not have agreed
to a standard, or even subsidized, adoption.[^307] In some instances,
these cases have been resolved in favor of the family with their
receiving funds for needed services. Parents in these situations have
strongly pushed for any and all pertinent information about a child they
are considering for adoption.[^308]

[Parenting/Custody Evaluations:]{.underline}

One of the most sensitive areas in the field of FASD is whether parents
of children with FASD are able to retain custody. These issues are of
particular concern if the parents themselves have FASD. Parenting and
custody evaluations should consider, at the minimum, the following
factors:

-   The ability of the parent to adequately provide for the child and
    ensure their safety

-   The stability of the family home and the ability of the parent to
    maintain such stability

-   The intellectual capabilities of the parent and how these translate
    into daily life when caring for the children

-   The level of drug/alcohol use of the parent and whether the parent
    has accessed treatment

-   Who, if either parent, can best meet the needs of the child over a
    sustained period of time

Such evaluations should be conducted by professionals who have the
training to conduct formal evaluations, and should be done in
conjunction and collaboration with other professionals that have had
sustained contact with the family. If at all possible, interviews with
treatment providers and child welfare or caseworkers should be
conducted. The more background information possible, the better.

It should not be assumed that all parents with FASD are unable to care
for their children. However reports have suggested increased
difficulties for parents with FASD in providing care for their children.
There are also cases where, with support and wrap-around services,
parents with FASD have been able to maintain custody of their children.
In the latter case, wrap-around services including family preservation
services, in-home parent training, public health nursing, long-term
mental health services, drug/alcohol services, and childcare have been
provided.

[Termination of Parental Rights**:**]{.underline}

One of the most difficult situations for a parent is to be involved in
the termination of parental rights. This is generally the final step in
a long process of abuse/neglect, foster care, reunification, and
subsequent abuse. In the past few years, federal legislation was passed
that mandates a permanency placement plan be put in place within 18
months of the child's placement in foster care. The purpose of this
legislation was to ensure that children did not languish in foster care
and multiple placements for a number of years, as had often been the
case.

Termination of parental rights is one of the most devastating situations
that parents can face. Therefore, before this step is taken, it is vital
that all efforts are made to engage the parents in services even as the
children is protected. Parents who have FASD themselves may not be able
to follow through on services, make plans, sustain a stable environment,
or ensure their children's safety. For these reasons, they may be at
greater risk to have their children placed in foster care and to
eventually lose custody.

Before termination of parental rights occurs, a parenting/custody
evaluation should be conducted. Services should be offered and assessed
for success or failure and options for an open adoption with episodic
visits discussed. One of the consequences frequently noted in situations
where women lose their children is another pregnancy. The grief and
depression many women feel over the loss of their children may be
ignored in the termination process. An open adoption may provide
continued contact, in a safe and supervised manner. This type of contact
which may lessen the grief and also possibly reduce the risk of another
pregnancy that might result in yet one more child being removed from the
mother.

[Guardianship:]{.underline}

*"We had to take a guardianship of our adult child because he bought
luxury cars three times without having any job."*

*- Mother of a 28-year-old man with FAS*

Assignment or removal of a guardianship or protected payee is a less
complicated legal issue than those previously discussed in either the
criminal or civil sections. A guardianship can be put in place through
the court for patients with cognitive and functional disabilities.
Disabilities should reach the level of impairing decision-making,
signing contracts and management of funds before such steps are taken.

The need for protection from exploitation does not decrease as the
patient grows older. If the patient is on Social Security, is receiving
per capitas or is working, a protected payee is often needed. There is a
difference between a protected payee and a guardianship. A guardian can
sign contracts, make long-term plans, and manage other daily aspects of
the patient's life. A protected payee is simply someone who manages
funds. Some adult patients with FASD may only need a protected payee
while others with more impairment will need a guardianship throughout
their lives.

[The Role of the Professional:]{.underline}

*"I have met children with FAS who are so vulnerable and gullible that I
could get them to confess to any crime I choose. That is why people with
FAS must have a legal advocate. "*

> *- FAS Educator on the concerns of people with FAS in the legal
> system*

The professional may have many roles in legal issues. Defense lawyers
need to have an awareness of FASD to adequately represent their client.
Prosecutors will need the same awareness to make more appropriate
decisions in terms of what charges should be pressed, how plea decisions
might be negotiated, and what recommendations might be made to the
court. Pre-sentencing officers who have an awareness of FASD are in an
ideal position to provide the court with information to make sentencing
suggestions that more adequately address the special needs of the
defendant with FASD. Psychologists and social workers can help make
assessments to aid in referring the defendant to appropriate programs.

The role of the professional in criminal cases is to:

-   Assess the abilities and possible mental health and cognitive
    factors impacting the defendant

-   Educate the court as to the possible debilitating factors associated
    with FASD

-   Provide information to the court as to alternatives to
    incarceration, if appropriate

The evaluator should request as much background information as possible
prior to starting the evaluation process. Information should include
school records, medical records, police reports, therapy records,
witness statements, and, if at all possible, confirmation of prenatal
alcohol exposure. Once the evaluation is completed, it should be written
in a manner that outlines concerns and risk factors as well as possible
interventions.

In civil cases, the role of the professional may also be to educate the
court regarding options for placement, services and custody. It is truly
in the legal arena that the skills of all professionals can come
together as a team in the best interest of the child, the family, and
the community at large.

In one homicide case, the defense attorney, prosecutor, pre-sentencing
officer, child welfare worker, and psychologist all came together to
assess the needs of the defendant. Because he was 16 years old and it
was a second-degree murder charge, the youth was declined into the adult
judicial system. Through the cooperation of all the professionals
involved, a plan was made whereby the youth was allowed to plead guilty
to a voluntary manslaughter charge and serve his time in a juvenile
facility. The psychologist and social worker were given permission to
meet with the youth on a twice-monthly basis while he was incarcerated.
At the end of the 31-month sentence, the youth was placed on Social
Security with a protected payee and enrolled in a vocational program.
Because of the cooperative efforts of the professionals involved and the
support of the judge, this case, although tragic at the outset, had a
happier ending.

**Integration of Traditional Native Beliefs, Values and Practices:**

In the past, community concerns similar to today's legal issues were
resolved through a council of elders. Conflicts and concerns were
brought before the elders and decisions made based upon what was in the
best interest of the community.[^309] Today, while the council of elders
may not exist as in the past, many tribes have formed their own courts
and law enforcement services. Tribal courts may or may not address
criminal issues. Tribal courts retain custody over children who are
tribal members and make placement and custody decisions. Many
contemporary tribal courts came into being after the implementation of
the 1978 Indian Child Welfare Act (IDWA), which allowed the tribes to
retain custody over their members.[^310]^,^[^311]

Legal jurisdiction in Native communities can often be confusing. In some
situations, the tribe and county will hold cross-jurisdiction. In other
situations, for violent crimes, federal jurisdiction is in place. In
others, the tribal courts retain control. These cross-jurisdictions need
to be addressed at the outset of any legal situation whether it is
criminal or civil. It is important that professionals understand the
jurisdiction issues prior to their involvement in either criminal or
civil cases that include Native children and families.

Many professionals who have limited contact with Native children and
families may not fully understand the importance of legislation such as
the ICWA, the Indian Self-Determination Act, and other applicable laws.
The two Acts cited were written to ensure that Native children are not
simply removed from their families and communities based on stereotypes
and the actions of "well-meaning" professionals. Understanding the
history and culture of Native people and that of any particular
community is crucial when any professional is working in the legal
realm. Today, it is important that courts do address the requirements of
the Indian Child Welfare Act, both for legal and moral reasons.

Knowing the family history is very important, as many Native children
are assumed to be alcohol exposed when in reality they are not. It is
important that, when making parenting and custody decisions, culture,
history, and connections to one's tribal community be considered.
Professionals can seek consultation from elders, tribal social workers,
tribal judges, and Native professionals at the time of their involvement
in criminal and civil cases. The purpose of the 1978 Indian Child
Welfare Act was to allow tribal people to retain control over their own
children.[^312]^,^[^313] While it is not likely that the council of
elders will be brought back to make legal decisions, it is important to
recognize the wisdom in this model and to incorporate as many
traditional values as possible in making legal decisions.

**[Legal Concerns and Service Matrix:]{.underline}**

At the start of Section I, a case study was detailed. Additional
concerns related to family issues were discussed at the beginning of
this chapter. Below is the legal needs matrix for Jerilynn across the
lifespan. Please note the changes in needs and services required as
Jerilynn grows older. With each section, a portion of the matrix will be
completed with the full series of matrices finished at the end of the
manual.

**Figure 11**

**Matrix V:**

**Legal Concerns for Jerilynn**

  ----------------------------------- -----------------------------------
  Ages 0-5                            Termination of parental rights,
                                      legal issues associated with abuse
                                      and neglect, dependency

  Ages 6-11                           Termination of parental rights,
                                      legal issues associated with abuse
                                      and neglect, dependency, adoption

  Ages 12-17                          Criminal charges, termination of
                                      parental rights, legal issues
                                      associated with abuse and neglect,
                                      dependency

  Ages 18 and Up                      Termination of parental rights,
                                      legal issues associated with abuse
                                      and neglect, dependency, custody
                                      concerns, criminal concerns
  ----------------------------------- -----------------------------------

> **Legal Services for Jerilynn**

  ----------------------------------- -----------------------------------
  Ages 0-5                            Establishment of dependency,
                                      criminal charges against birth
                                      parents for abuse and neglect

  Ages 6-11                           Adoption

  Ages 12-17                          Evaluation for competency,
                                      assignment of legal counsel

  Ages 18 and Up                      Assignment of legal counsel,
                                      establishment of dependency for
                                      child
  ----------------------------------- -----------------------------------

**Section VII:**

**Avoiding Professional Burnout**

Fetal Alcohol Syndrome is a relatively new area of research, study, and
application in the field of developmental disabilities. With rare
exceptions, notably the State of Nevada, most states do not recognize
Fetal Alcohol Syndrome as a developmental disability despite the Surgeon
General's warning about drinking during pregnancy

over twenty years ago, current CDC data suggests that the number of
women drinking during pregnancy is actually increasing. [^314] For many
years, financial resources have decreased in spite of the need for such
increased services. All of these factors can lead to frustration and, at
times, isolation for professionals working in the field of Fetal Alcohol
Syndrome.

One of the most common suggestions given to parents and caregivers of
children, adolescents, and adults with FASD is to find or create a
caregiver's support group. In several areas, formalized coalitions of
professionals working together in the field of FASD have been formed.
The Four State Consortium from Minnesota, North Dakota, South Dakota,
and Montana is funded through the Center for Substance Abuse Prevention
(CSAP) for the purpose of "reducing the risk factors that result in
children being born affected by Fetal Alcohol Syndrome (FAS) or Fetal
Alcohol Effect (FAE)."

Another effort to pull together community resources is through the State
of Alaska Office of Fetal Alcohol Syndrome.[^315] Through this office,
community diagnostic teams were formed with trainings on FAS being held
throughout the state. The FAS-DPN through the University of Washington
is a model that is being replicated in both the United States and
Canada. The FAS-DPN is training professionals throughout both of these
countries. Such trainings and the formation of consortiums are helping
address the issues regarding FAS, but also provide a network for
professionals to discuss their concerns, knowledge, and efforts. Joint
efforts by professionals and family members have led to proposed, and in
some cases, passed legislation intended to aid those affected by
FASD.[^316]^,^[^317]

In Wisconsin, the Family Empowerment Network (a project of the
University of Wisconsin Medical School -- Department of Family Medicine)
with funding from the state's Bureau of Substance Abuse Services
provides training throughout the state on FASD, and sponsors clinics to
screen women and children at eight women-specific ADDA treatment
centers. Once identified, FEN develops a family service plan to assist
the family in negotiating with the health, social, and educational
services maze for their children with FASD.

Networking efforts such as those described above, provide forums for
professionals in the manner that parent support groups have allowed
parents and caregivers to gain a sense of support and increased
knowledge.[^318] Aiding professionals in understanding FASD can help
them establish reasonable expectations both for themselves and for their
clients. Sharing information across professions can serve as a means to
improve services, increase prevention efforts, and lessen isolation that
professionals in this field may experience. The more professionals can
educate others as well as set realistic expectations and goals, the more
likely it is that burnout can be avoided.

One other project underway to improve professional communication and
increase knowledge about FASD is the development of the FAS Center of
Excellence, funded through CSAP. The Center is bringing together
professionals from all disciplines and across the country to share their
expertise. It is forming a partnership of professionals and family
members. Hopefully, the Center of Excellence's efforts will lead to more
effective prevention efforts, as well as to provide a positive network
for professionals.

All of the efforts described are intended to improve services for
clients with FASD. While they may not have the stated purpose of
reducing burnout among professionals working in the field of FAS, they
may, indeed, serve the purpose of enhancing client's lives.

In the past nearly thirty years, the field of Fetal Alcohol Syndrome has
grown to become a major area of concern, but frequently remains an
enigma to both professionals and the lay community alike. Hopefully, as
consortiums are formed, diagnostic teams are brought together and
information spreads, FAS will become the focus of legislatures,
educational programs, and the community at large. Such efforts may aid
in stopping the occurrence of this completely preventable birth defect
and in providing more humane services for those affected.

![](media/image32.wmf){width="2.9694444444444446in" height="3.36875in"}

**Section VIII**

**Epilogue:**

**Coyote and Raven**

After Raven's return to the village, he often sat with Watcher Woman and
Coyote and talked about what he had learned in the city. All three of
them discussed ways they could share what they learned with the
community. More than once, Watcher Woman sighed and said; "We need to
rebuild the council of elders. We need to teach the People how to
prevent Fetal Alcohol Syndrome. We need to help those who have been
touched by spirit sickness."

How to make this happen seemed to be a puzzle that could not be solved.
The trio, over the years, had talked to people here and there. One day,
a young teacher came to work at the village school. Tall Cedar was a
kind young man whom people liked as soon as they met him. His job was
working with students who had special needs. He had heard that Watcher
Woman was a wise elder who knew much about the People in the village.
One day, he came to talk to her about the students he had in his
classroom, those he believed might have FASD. He wondered how he might
approach their parents and who else in the village may be able to help.

"I do not want to offend people by asking about their lives, but I want
to help the children in the school. I think that many of my children
must have been affected by their parent's spirit sickness. How can I
help?" Tall Cedar asked Watcher Woman.

Tall Cedar, as he sat across the room from Watcher Woman in her tiny
home, could not keep from noticing a large black raven that walked
around the chairs where he and Watcher Woman sat. He was also startled
to see a large, brown, bushy-tailed coyote peering from behind Watcher
Woman's chair. Watcher Woman laughed as Tall Cedar's eyes opened wide at
the sight of her faithful companions.

![](media/image33.wmf){width="6.18125in" height="3.7958333333333334in"}

"Tall Cedar," Watcher Woman chuckled, "Coyote and Raven have been my
helpers for many, many years. Raven has gone to the city to the place of
learning. He knows much about spirit sickness and what happens to
children when their mothers drink during pregnancy."

Then, her lined and lovely face became very serious. "We have tried, we
three, to tell the People in the village about Fetal Alcohol Syndrome.
Now that you are here, maybe we can start to build a team to help our
children and their families. You were trained at the place of learning
in the city. Maybe you could talk to people there and have them come to
our village to help us. Maybe you could call a meeting of the other
teachers. I will ask people I know to come."

Tall Cedar nodded. "I think that is a wonderful idea! I will talk with
the school principal tomorrow. Maybe we can all think of ways to talk to
our children's parents about spirit sickness and how we can all work
together to help our special children."

Then, Watcher Woman smiled a knowing grin. "I also know two young people
in the village who have Fetal Alcohol Syndrome and Fetal Alcohol
Spectrum Disorder. They live with their auntie and uncle. Come with me
and I will introduce you to this family."

![](media/image34.wmf){width="6.18125in" height="5.23125in"}

Tall Cedar and Watcher Woman, accompanied by a laughing Coyote and
Raven, strolled through the woods that separated Watcher Woman's tiny
home from the rest of the village. Down the dusty main road they walked
until they reached a home near the river. Watcher Woman knocked on the
door, which was quickly opened by a short young man and a five-year-old
girl.

"Teacher!" the young man exclaimed. "What are you doing here?"

The young man was East Light, a student in Tall Cedar's classroom. He
was one of two children who had been born to a woman who suffered from
spirit sickness. His twin sister, Shining Eyes, was the mother of Spring
Song, the young girl who stood next to East Light. Then, East Light
spied Watcher Woman.

"Come in Teacher, come in!" he said excitedly. "Auntie and Uncle will be
so glad to see you. Come in!"

Tall Cedar and Watcher Woman entered the tidy home and were greeted by
Auntie and Uncle. East Light was so excited he almost seemed to dance.
He and Spring Song showed Watcher Woman and Tall Cedar a place to sit.
Auntie and Uncle joined them and began a conversation that was to change
their lives. A short time after that, Watcher Woman asked where Shining
Eyes might be.

Auntie sighed and Uncle shook his head. "She never wants to talk to
anyone. Since that awful night in the woods nearly six years ago, she
has been so afraid of people. She never leaves the house unless all of
us are with her."

Auntie, Uncle, and Watcher Woman all were silent as they thought of the
night Shining Eyes was found in the woods, hurt and nearly frozen to
death. That terrible night came after many years of Shining Eyes
struggling with school, drinking, and being taken advantage of by her
peers and older men. Shining Eyes was one of the People in the village
about whom Tall Cedar and Watcher Woman were so concerned.

As the afternoon softened into evening, ways to bring a council of
elders back to the village were discussed. Plans were made and discarded
and made again. East Light offered many suggestions, most impractical
but listened to carefully by the others. Finally, it was agreed upon
that Watcher Woman would talk to the elders in the village and from
other towns nearby. Auntie and Uncle would talk to all of their friends
and other parents of special children. Tall Cedar agreed he would ask
for help from the teachers and other people at the school.

After several hours of talking, Uncle and East Light brought out a meal
and called Shining Eyes to come and join everyone. Spring Song ran into
the bedroom she shared with her mother. She pulled her mother by the
hand into the front room. However, when Shining Eyes saw a stranger in
the dining room, she ran back into her room and closed the door. The
others shook their heads in sadness and sat down to eat their meal.
Spring Song gave thanks to the Creator and the rest said silent prayers
that their plans would work.

The next morning, Tall Cedar talked to other teachers and the principal
at his school. He spoke of his concerns and hopes for his special
students. At first, the other teachers did not want to listen, as Tall
Cedar was young and new to the village. But, day after day, Tall Cedar
spoke of the things he knew that could help People in the village. Day
after day, he spoke of changing despair to hope. Week after week, he
shared the successes of his students. Finally, after several months, the
principal of the school agreed that he would set aside a time for all of
the teachers to come to a community meeting about spirit sickness and
its effect on the community.

Meanwhile, Auntie and Uncle were having better luck with the People in
the village who had children affected by alcohol. Many of the parents,
birth, foster, and adoptive, were frustrated over the difficulties their
children were having in school and in the community. They were eager to
come together with others and talk about how they could help each other
and their children. Auntie, Uncle, and their friends spoke to doctors,
nurses, drug and alcohol counselors, day care workers, dentists,
lawyers, police officers, and anyone who would listen about the meeting
they wanted to have.

The parents were relentless! They needed help and were relieved that the
problems would finally be talked about.

![](media/image35.wmf){width="6.35625in" height="6.775in"}

Watcher Woman talked to the grandmothers and grandfathers in her village
and those nearby. She spoke of the old ways and how it was time to
rebuild what had worked in the past. She spoke of how people worked
together and how it was time to bring back the wisdom of the elders. She
spoke of the grief and loss of the People and how it had resulted in
spirit sickness and children with FASD. She spoke of the obligation
elders had to take care of their People. She spoke of coming together
and making a better world for all. She spoke of hope for the future.

Everywhere she went, she was accompanied by a smiling Raven and a
laughing Coyote. After speaking to people, Watcher Woman, Coyote, and
Raven would make their way home, talking all the way about their plans.
Long into the night, the yips of a large brown coyote and the caws of a
large black raven could be heard in harmony with the low, kind voice of
a lovely old woman.

After talking to many others over the months, Auntie, Uncle, Watcher
Woman, and Tall Cedar met again. They discussed how many had pledged to
come to the meeting and where it would be held. Tall Cedar agreed to go
with the family and Watcher Woman to the place of learning where Raven
had gone before with the family. A time was set and, once more, a large
Raven followed a car as it drove from the village into the city.

Auntie, Uncle, Watcher Woman, Tall Cedar, East Light, Shining Eyes and
Spring Song joined the team of helpers. Raven, cawing loudly from the
window, listened in. The team members eagerly agreed to come to the
village and teach all who would gather. They agreed to help the village
set up a team that could help the People. At the end of the day, a sense
of hope and excitement filled the room. A date was set for the community
meeting and everyone went home, tired, but ready to take on the task of
changing the future.

Raven had flown ahead of the family, Watcher Woman, and Tall Cedar. He
was perched on the porch of Watcher Woman's tiny house with Coyote
sitting on the steps when everyone arrived home. Watcher Woman smiled a
tired smile as she opened the door. The three went inside and soon were
asleep, with dreams of healthy, happy children filling their minds.

![](media/image36.wmf){width="6.305555555555555in"
height="3.2743055555555554in"}

Finally, the day came for the meeting. The principal had decided that he
would allow it to be held at the school. It was a cool morning in late
spring. The clouds were heavy and filled with the possibility of rain.
Tall Cedar paced back and forth around the room as he anxiously awaited
the beginning of the meeting.

"I am so worried that no one will come," he confided to Watcher Woman.

"What will be, will be," Watcher Woman replied. "People are afraid of
being judged and many feel shame over their spirit sickness. But, my
young friend, be patient and know that who should be here will come."

Within a few minutes, the door to the room opened and people began to
enter. Slowly, the room filled. Watcher Woman turned and smiled at Tall
Cedar. She winked and made her way to the front of the room. She began
to speak of how everyone in the community could make changes and work to
overcome shame and fear. A beam of light shown on Watcher Woman's face
as she talked of grace and healing. Her words washed over the many
people who had gathered. Soon, she was joined at the front of the room
by the members of the team of healers from the place of learning.

![](media/image37.wmf){width="5.43125in" height="4.378472222222222in"}

One by one, people in the room stood and told their stories. One by one,
helpers and elders, parents, and those affected by Fetal Alcohol
Syndrome expressed their needs and dreams. After many hours, it was
agreed that a team would be built from the elders and helpers in the
village. Teachers and doctors, counselors and parents, all agreed they
would come together to help each other. As the meeting was nearly done,
the door at the back of the room opened. A hush fell over the room as
Shining Eyes, holding the hand of her small daughter came into the room
and walked to the front to stand next to Watcher Woman.

"I have come to speak and to help. " Shining Eyes said softly. "I am
coming because I wish to no longer be afraid. I have come to make sure
that no one else has to live with the shame of spirit sickness. I have
come to make a difference."

Tears began to flow from her eyes and from the eyes of many others in
the room. But, they were not tears of sadness. They were tears of hope
and healing. Watcher Woman smiled as she placed an arm around the narrow
shoulders of Shining Eyes.

"We will all work together and rebuild the old ways of respect and love,
caring and help. We will all come together to make our world a better
place. Now, let us thank our Creator and go out into the World to start
our jobs!"

![](media/image38.wmf){width="6.429166666666666in"
height="3.4881944444444444in"}

As Watcher Woman stood to thank Creator, a shiny black Raven and a large
brown Coyote raised their voices in song. And so, let us all join hands
and walk with our special ones. Let them be the light to show the way to
the future. Let us all work to rebuild the council of elders. And in the
end, let us never forget that our special souls, those with Fetal
Alcohol Syndrome and Fetal Alcohol Spectrum Disorder are our teachers.
Let us join with Coyote and Raven and Watcher Woman and our special
souls in thanking Creator for this beautiful World and all contained
within.

**Section IX**

**References**

Abel, E. L. "In Utero Alcohol Exposure and Developmental Delay of
Response Inhibition. " [Alcoholism: Clinical and Experimental
Research]{.underline}. 6 (1982): 369-376.

Abel, E. L. , and Sokel, R. J. Incidence of Fetal Alcohol Syndrome and
Economic Impact of FAS-Related Anomalies. [Drug Alcohol
Depend.]{.underline} 19:51-70, 1987.

Arbogast, D. (Ed. ) [Wounded Warriors: A Time for Healing]{.underline}
Omeha, NE: Little Turtle Publications, 1995.

Achenbach, T. M. and Edelbrock, G. [Manual for the Behavior Checklist
and Revised Child Behavior Profile]{.underline}. Burlington, VT: U. of
Vermont, Department of Psychiatry, 1983.

Achenbach, T. M. [Developmental Psychopathology]{.underline}. New York,
NY: Ronald Press, 1974.

Alcoholics Anonymous ["Big Book"]{.underline} New York: Alcoholics
Anonymous, 1988.

Alexander, K. L. , Entwisle, D. R. , et. al. [Achievements in the First
Two Years of School: Patterns and Processes (Monographs of the Society
for Research in Child Development, Serial No. 218, V)]{.underline}.
Chicago, IL: U. of Chicago Press, 1974.

Alexander-Roberts, C. [The ADHD Parenting Handbook]{.underline}. Dallas,
TX: Taylor Publishing Co, 1994.

American Psychiatric Association. [Diagnostic and Statistical Manual of
Mental Disorders]{.underline}. (4^th^ ed. ) Washington, DC: American
Psychiatric Association, 1994.

Andrade, R. , and Stevens, S. J. (2001). Reading between the Lines: Drug
--Involved Women Seeking New Identities. The 63^rd^ Annual Scientific
Meeting of the College on Problems of Drug Dependence, Scottsdale, AZ. ,
June 16-21, 2001.

Antonello, S. J. [Social Skills Development: Practical Strategies for
Adolescents and Adults with Developmental Disabilities]{.underline}.
Needham Heights, MA: Allyn & Bacon, 1996.

Arbogast, D. (Ed. ) [Wounded Warriors: A Time for Healing]{.underline}
Omeha, NE: Little Turtle Publications, 1995.

Aronson, M. , Kyllerman, M. , Sabel, K. G. , Sandin, B. , and Olegard,
R. "Children of Alcoholic Mothers: Developmental, Perceptual, and
Behavioral Characteristics as Compared to Matched Controls. " [Acta
Paediatrica Scandinavica]{.underline}. (1985) 74.

Astley, S. J. and Clarren, S. K. "A Fetal Alcohol Syndrome Screening
Tool. " [Alcohol. Clin, Exp. Res.]{.underline} 19 (1995) 1565-1571.

Attneave, C. L. "Therapy in Tribal Settings and Urban Network
Intervention". [Family Process]{.underline}. 8 (1969) 192-210.

Badal, D. W. [Treatment of Depression and Related Moods: A Manual for
Psychotherapists]{.underline}. Dunmore, PA: Jason Aronson, Inc. , 1989.

Barlow, D. H. (Ed. ) [Clinical Handbook of Psychological
Disorders]{.underline}. 2^nd^ ed. New York, NY: Guilford Press, 1993.

Barrett, K. C. and Wilson, M. A. [Child Development]{.underline}.
Westerville, OH: Glencoe McGraw-Hill, 1994.

Bataille, G. M. and Sands, K. M. [American Indian Women: Telling Their
Lives]{.underline}. Lincoln, NE: U. of Nebraska, 1987.

Baxter, S. L. Adapting Talk Therapy. In [Fantastic Antoine Grows
up.]{.underline} (J. Kleinfeld, B. Morse, and S. Wescott, Eds. )
Fairbanks, AK: University of Alaska Press, 2000.

Beattie, M. [Codependent No More]{.underline} New York, NY:
Harper/Hazelden, 1987.

Beattie, M. [Beyond Codependency.]{.underline} New York: Walker, 1990.

Beck, A. T. and Emery, G. [Anxiety Disorders and Phobias: A Cognitive
Perspective]{.underline}. New York: Guilford Publications, 1985.

Beck, A. T. , Rush, A. , and Shaw, F. F. , and Emerg, B. [Cognitive
Therapy of Depression]{.underline}. New York: Guilford Publications,
1979.

Beck, A. T. [Depression: Causes and Treatment]{.underline}.
Philadelphia, PA: U. of Pennsylvania, 1972.

Bell, R. [Changing Bodies, Changing Lives: Book for Teens on Sex and
Relationships]{.underline}. New York: Random House, 1988.

Berlin, F. S & Meinecke, C. F. (1981). Treatment of sex offenders with
antiandrogenic medication: conceptualization, review of treatment
modalities, and preliminary findings. [Am J Psychiatry]{.underline}*,
138*, 601-7.

Black, C. [It Will Never Happen to Me.]{.underline} Center City, MN :
Hazelden, 1987.

Blume, S. B. [What You Can Do to Prevent Fetal Alcohol Syndrome: A
Professional's Guide]{.underline}. Edina, MN: Johnson Institute, 1992.

Blume, S. B. "Women and Alcohol: Issues in Social Policy. " [In Gender
and Alcohol: Individual and Social Perspectives]{.underline}, edited by
Richard W. Wilsnack and Sharon C. Wilsnack, pages, 462-489. New
Brunswick, NJP 1997.

Bond, N. W. "Fetal Alcohol Exposure and Hyperactivity in Rats: The Role
of the Neurotransmitter Systems Involved in Arousal and Inhibition. "
West, J. R. (Ed. ) [Alcohol and Brain Development]{.underline}. New
York, NY: Oxford University, (1986) 45-70.

Boxer, M. C. , Cohler, B. J. , Herdt, G. and Irvin, F. "Gay and Lesbian
Youth. " Tolan, P. H. and Cohler, B. J. (Eds. ) [Handbook on Clinical
Research and Practice with Adolescents]{.underline}. New York: Wiley,
1993.

Boyce, W. T. and Boyce J. C. "Acculturation and Changes in Health Among
Navajo School Students. " [Social Sciences and Medicine]{.underline}. 17
(1983) 219-226.

Boyd, G. A. [Drugs and Sex]{.underline}. Drug Abuse Prevention Library.
New York, NY: The Rosen Group, 1993.

Boyd, T. A. , Ernhart, C. B. , Greene, T. H. , Sokol, R. J. , and
Matler, S. "Prenatal Alcohol Exposure and Sustained Attention in the
Preschool Years. " [Neurotoxicology and Teratology]{.underline}. (1991)
13.

Brady, J. P. and Grollman, S. [Risks and Reality: Teaching Preschool
Children Affected by Substance Abuse]{.underline}. Washington, DC: DHHS,
1994.

Bradley, K. A. , Badrinath, S. , Bush, K. , Boyd-Wickizer, J. , Anawalt,
B. "Medical Risks for Women who Drink Alcohol. [Journal of General
Internal Medicine.]{.underline} 13(1198) 627-638.

Bradley, K. A. , Boyd-Wickizer, J. , Powell, S. H. , Burman, M. L.
"Alcohol Screening Questionnaires in Women: A Critical Review. "
[JAMA]{.underline} 280(1998) 166-171.

Braam v. State of Washington, Cause #:No. 98 2 01570 1.

Brazleton, T. B. Neonatal behavioral assessment scale. [Clinics in
Developmental Medicine, 50.]{.underline} London: William Heinemann
Medical books, LTD. , 1973.

Brown, R. T. , Coles, C. D. , Smith, I. E. , Platzman, K. A. ,
Silverstein, J. , Erickson, S. , and Falek, A. "Effects of Prenatal
Alcohol Exposure at School age 11: Attention and Behavior. "
[Neurotoxicology and Teratology]{.underline}. 13 (1991) 369-376.

Burack, J. A. , Enns, J. T. (Eds. ) [Attention, Development, and
Psychopathology]{.underline}. New York, NY: Guilford Publications, Inc,
1997.

Burgess, D. Presentation on FAS in Rolla, ND, April, 1992.

Burgess, D. M. , Lasswell, S. L. , Streissguth, A. P. "Educating
Children Prenatally Exposed to Alcohol and Other Drugs". \[Brochure\].
Seattle, WA. Fetal Alcohol and Drug Unit, U. of Washington, 1993.

Burgess, D. M. , Streissguth, A. P. "Educating Students with Fetal
Alcohol Syndrome or Fetal Alcohol Effects. " [Pennsylvania
Reporter]{.underline}. 22(1) 1990 1-3.

\-\-- "Fetal Alcohol Syndrome and Fetal Alcohol Effects: Principles for
Educators: *A* Special Section on Children at Risk. " [Phi Delta
Kappan.]{.underline} 74(1) 1992 24.

Carmichael-Olson, H. "The Effects of Prenatal Alcohol Exposure on Child
Development. " [Infants and Young Children]{.underline}. 6(3) 1997,
10-25.

Carmichael-Olson, H. and Burgess, D. M. , "Early Intervention for
Children Prenatally Exposed to Alcohol and Other Drugs. " Guralnick, M.
J. Baltimore, MD: Brookes, (Ed. ) [The Effectiveness of Early
Intervention.]{.underline} 1997, 109-145.

Carmichael-Olson, H. , Burgess, D. M. , and Streissguth, A. P. [Fetal
Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FASD): A Lifespan View
with Implications for Early Intervention. Zero to Three]{.underline}.
National Center for Clinical Infant Programs. 13(1) 1992. 24-29.

Carmichael-Olson, H. , Sampson, P. D. , Barr, H. M. , Streissguth, A. P.
, and Bookstein, F. L. [Neuropsychological Deficits in Adolescents with
Fetal Alcohol Syndrome]{.underline}. (Tech. Rep. No. 96-17). Seattle,
WA: U. of Washington, 1996.

Carmichael-Olson, H. , Sampson, P. D. , Barr, H. M. , Streissguth, A. P.
, and Bookstein, F. L. "Prenatal Exposure to Alcohol and School Problems
in Late Childhood: A Longitudinal Prospective Study. " [Development and
Psychopathology]{.underline}. 1992.

Carmichael-Olson, H. , Streissguth, A. P. , Sampson, P. D. , Barr, H. M.
, Bookstein, F. L. and Thiede, K. "Association of Prenatal Alcohol
Exposure with Behavioral and Learning Problems in Early Adolescence. "
[Journal of the American Academy of Childhood and Adolescence
Psychiatry]{.underline}. 36(9) 1997, 1187-1194.

Casto, L. D. Fetal Alcohol Syndrome: 2001 Status Update. Alaska
Department of Health and Social Services; Office of Fetal Alcohol
Syndrome: Juneau, AK, 2002.

Centers for Disease Control and Prevention-National Center on Birth
Defects and Developmental Disabilities: Fetal Alcohol Syndrome; 1600
Clifton Rd. Atlanta, GA 30333: FAS Home Page, June 4, 2002.

Center for Substance Abuse Prevention. "Maternal Substance Use
Assessment Methods Reference Manual: A Review of Screening and Clinical
Assessment Instruments for Examining Maternal Use of Alcohol, Tobacco,
and Other Drugs" [CSAP Special Report 13]{.underline}. DHHS Pub. No.
(SMA) 93-2059. Rockville, MD: Center for Substance Abuse Prevention,
1993.

Chernan, L. Personal Communication, August 2002.

Clarren, S. K. "Teachings From The FAS-DPN Clinic. " 1997-2001

Clarren, S. K. and Astley, S. J. "The Development of the Fetal Alcohol
Syndrome Diagnostic and Prevention Network in Washington State. "
Streissguth, A. P. and Canter, J. (Eds. ) [The Challenge of Fetal
Alcohol Syndrome: Overcoming Secondary Disabilities]{.underline}.
Seattle, WA: U. of Washington, 1997.

Clarren, S. K. and Smith, D. W. "The Fetal Alcohol Syndrome. " [New
England Journal of Medicine]{.underline} 298 (1978) 1063-1067.

Clarren, S. K. , Alvord, E. C. , Sumi, S. M. , Streissguth, A. P. , and
Smith, D. W. "Brain Malformations Related to Prenatal Exposure to
Ethanol. " [Journal of Pediatrics]{.underline}. 92 (1978).

Coggins, T. Personal communication, June, 2000.

Cohen, D. J. and Volkmar, M. D. , Fred R. (Eds. ) [Handbook of Autism
and Pervasive Development Disorders]{.underline}. New York, NY: John
Wiley and Sons, 1997.

Cole, J. , Tiegreen, A. (Illustrator) [Asking about Sex and Growing Up:
A Question-and-Answer Book for Boys and Girls]{.underline}. 1998.

Coles, C. D. , Smith, I. E. , and Falek, A. "A Neonatal Marker for
Cognitive Vulnerability to Alcohol's Teratogenic Effects. " [Alcoholism:
Clinical and Experimental Research]{.underline}. 11 (1987).

Coles, C. D. , Smith, I. E. , Fernhoff, P. M. , and Falek, A. "Neonatal
Neurobehavioral Characteristics as Correlates of Maternal Alcohol Use
During Gestation. " [Alcoholism: Clinical and Experimental
Research]{.underline}. 9 (1985).

Comfort, M. ; Kaltenbach, K. ; and Loverro, J. A search for strategies
to engage women in substance abuse treatment. In [Social Work in Health
Care]{.underline} 31:4, pp. 59-70 (2000).

Comfort, ML & Kaltenbach, K. "The Psychosocial History: An interview for
pregnant and parenting women in substance abuse treatment and research.
" In E. R. Rahdert (Ed) [Treatment for Drug-Exposed Women and Their
Children: Advances in Research Methodology, NIDA Research Monograph
165]{.underline}*.* Rockville MD: US Department of Health and Human
Services, 1996, pp. 123-142.

Copeland, E. D. , Love, V. [Attention, Please! A Comprehensive Guide for
Successfully Parenting Children with Attention Disorders &
Hyperactivity]{.underline}. Plantation, FL: Specialty Press, 1996.

Darby, B. L. , Streissguth, A. P. and Smith, D. W. "A Preliminary
Follow-up of Eight Children Diagnosed with Fetal Alcohol Syndrome in
Infancy. " [Neurobehavioral Toxicology & Teratology.]{.underline} 3
(1981) 157-159.

Davis, D. [Reaching Out to Children with FASD: A Handbook for Children
Affected by Fetal Alcohol Syndrome]{.underline}. Paramus, NJ: Center of
Applied Research in Education, 1994.

Davis, F. S. [Private Zone: A Book Teaching Children Sexual Assault
Prevention Tools]{.underline}. Charles Franklin Press, 1984.

DeLoria, V. [American Indians; American Justice.]{.underline} Austin,
TX: University of Texas Press, 1983.

DeLoria, V. [The Indian Reorganization Act: congresses and
bills.]{.underline} Norman, OK: University of Oklahoma Press, 2002.

DeLoria, V. ; Wilkins, D. E. [Tribes, Treaties, and Constitutional
Tribulations.]{.underline} Austin, TX: University of Texas Press, 2000.

Drabble, L. "Elements of effective services for women in recovery:
Implications for clinicians and program supervisors. " [Journal of
Chemical Dependency Treatment]{.underline} 6(1/2):1--21, 1996.

Druse, M. J. and Tajuddin, N. "Effects of In Utero Ethanol Exposure on
the Developing Serotonergic System. " [Alcoholism: Clinical and
Experimental Research]{.underline}. 15 (1991).

Edelstein, S. B. et. al. [Children with Prenatal Alcohol or Other Drug
Exposure: Weighing the Risks of Adoption]{.underline}. Washington DC:
Child Welfare League of America, 1996.

Engel, B. [Beyond the Birds and the Bees: Fostering Your Child's Healthy
Sexual Development]{.underline}. New York, NY: Pocket Books, 1997.

Erdoes, R. and Ortiz, A. (Eds. ) [American Indian Trickster
Tales]{.underline}. New York, NY: Viking Penguin Books, 1998.

\-\--. [American Indian Myths and Legends]{.underline}. New York, NY:
Pantheon Books, 1985.

Evensen, D. Working with adolescents in high school: Techniques that
help. In [Fantastic Antione Grows up.]{.underline} (J. Kleinfeld, B.
Morse, and S. Wescott, Eds. ) Fairbanks, AK: University of Alaska Press,
2000.

Everett, F. , Proctor, N. and Cartmell, B. "Providing Psychological
Services to American Indian Children and Families. " [Professional
Psychology: Research and Practice]{.underline}. 14 (1983) 588-603.

Famy, C. , Streissguth, A. P. and Unis, A. "Mental Illness in Adult
Patients with Fetal Alcohol Syndrome and Fetal Alcohol Effects. "
[American Journal of Psychiatry.]{.underline} 155(4) 1988 552-554.

Fehr, L. "The criminal justice system and fetal alcohol syndrome.
[Counselor]{.underline}. 13(3), 1995.

Feighner, J. P. and Boyer, W. F. [Diagnosis and Depression]{.underline}.
New York, NY: Wiley Liss, 1992.

Fenwick, E. and Smith T. [Adolescence: The Survival Guide for Parents
and Teenagers]{.underline}. New York, NY: DK Publishing, Inc, 1994.

Ferry, D. "Fetal Alcohol Syndrome: An Effective Capital Defense. "
[CACJ/Forum]{.underline}, 24(2) 4-50.

Flack, F. and Draghi, S [The Nature and Treatment of
Depression]{.underline}. New York, NY: John Wiley & Sons, 1975.

Forehand, R. L. and McMahon, R. [Helping the Noncompliant Child: A
Clinician's Guide to Parent Training]{.underline}. New York, NY:
Guilford, 1981.

Foxcraft, D. (Ed) [The Sayings of Our First People.]{.underline}
Penticton, BC. : Theytus Books, LTD, 1995

Galanter, M. (Ed. ), [Recent Developments in Alcoholism: Children of
Alcoholics: Genetic Predisposition, Fetal Alcohol Syndrome,
Vulnerability to Disease, Social and Environmental]{.underline}. Vol. 9,
New York, NY: Plenum Press, 1991.

Gallant, D. M. [Alcoholism: A Guide to Diagnosis, Intervention and
Treatment]{.underline}. New York, NY: W. W. Norton & Company, Inc. ,
1987.

Getches, D. H. , Wilkinson, C. F. , Williams, R. A. [Federal Indian
Law.]{.underline} St. Paul, MN: West Publishing Co. , 1993.

Gidley, M. (Mick) [With one sky above us: life on an Indian reservation
at the turn of the century.]{.underline} Seattle: University of
Washington Press, 1985, c1979.

Giunta, C. T. and Streissguth, A. P. "Patients with Fetal Alcohol
Syndrome and Their Caretakers. " [Social Casework: The Journal of
Contemporary Social Work]{.underline}. 69(7) 1998, 453-459.

Glasser, J. "The Cycle of Shame**:** The heartbreak of fetal alcohol
syndrome in South Africa" [US News and World Reports.]{.underline} May
20, 2002.

Goldberg, M. E. "Substance-abusing women: False stereotypes and real
needs. " [Social Work]{.underline}, 40(6):789-798, 1995.

Grafe, S. [FAS; A guide for Daily Living]{.underline}. Victoria, BC:
Society of Special Needs Adoptive Parents, 1994.

Grant, T. M. , Ernst, C. C. , Streissguth, A. P. , Phipps, P. and
Gendler, B. "When Case Management Isn't Enough: A Model of
Paraprofessional Advocacy for Drug- and Alcohol-Abusing Mothers. "
[Journal of Case Management]{.underline}. 5(1) 1996.

Grant, T. M. , Ernst, C. C. , McAuliff, S. and Streissguth, A. P. , "The
Difference Game: An Assessment Tool and Intervention Strategy for
Facilitating change in High-Risk Clients. " [Families in
Society]{.underline}. 78(4) 1997, 429-432.

Graver, J. [How You Are Changing: For Discussion or Individual use: For
Ages 8 to 11 and Parents]{.underline}. (Concordia Sex Education, Book
3). St. Louis, MO: Concordia Press, 1995.

Grella, C. E. "Background and Overview of Mental Health and Substance
Abuse Treatment Systems: Meeting the Needs of Woman who are Pregnant or
Parenting. [Journal of Psychoactive Drugs]{.underline} 28 (1996)
319-343.

Greene, T. , Ernhart, C. B. Ager, J. , Sokol, R. , Martier, S, and Boyd,
T. "Prenatal Alcohol Exposure and Cognitive Development in the Preschool
Years. "[Neurotoxicology and Teratology]{.underline}. 13 (1991).

Greenspan, S. I. [The Challenging Child]{.underline}. Reading, MA:
Perseus Books, 1995.

\-\--[The Child with Special Needs: Encouraging Intellectual and
Emotional Growth]{.underline}. Reading, MA: Addison-Wesley Longman, Inc.
,1998.

\-\--[Playground Politics]{.underline}. Reading, MA: Perseus Books,
1993.

Groth, A. N. [Men who rape: The psychology of the offender]{.underline}.
New York: Plenum Press,1979.

Guilbert, P. [Counseling for Depression]{.underline}. Newbury Park, CA:
Sage Publications, 1992.

Guilbert, P. [Depression: The Evolution of Powerlessness]{.underline}.
New York, NY: Guilford Publications, 1992.

Guralnick, M. J. (Ed. ) [The Effectiveness of Early
Intervention]{.underline}. Baltimore, MD: Paul H. Brooks Publishing Co,
1996.

Hare, R. D. The PCL-R assessment of psychopathy: Some issues and
concerns. [Legal and Criminological Psychology]{.underline}*, 3*, (1988)
101-122.

Hare, R. D. , Hart, S. D. , & Harpur, T. J. Psychopathy and the DSM-IV
criteria for antisocial personality disorder. [Journal of Abnormal
Psychology]{.underline}*,* 100 (3), 1991, 391-398.

Hare, R. D. [Without conscience : the disturbing world of the
psychopaths among us]{.underline}

> New York: Guilford Press, 1999.

Hart, B. M. ; Risley, . R. [How to Use Incidental Teaching for
Calaboratizing Language]{.underline}. Austin, TX:PRO-ED, 1982.

Hartness, C. FAS Summit, Anchorage, AK, November, 2001.

Healy, J. M. [Your Child's Growing Mind: A Practical Guide to Brain
Development and Learning from Birth to Adolescence]{.underline}. New
York: Doubleday, 1987. 1994.

Herman, J. [Trauma and Recovery.]{.underline} New York: Basic Books,
1997.

Hutchison, S. H. "A Minority Under the Microscope: The American Indian
Reaction. " [Mental Health and Society]{.underline}. 2 (1975) 191-188.

Hyson, M. C. [The Emotional Development of Young Children: Building An
Emotion-Centered Curriculum.]{.underline} New York: Teachers College
Columbia University, 1994.

Indian Fetal Alcohol Syndrome Prevention and Treatment Act: Hearing
Before the Committee of Interior and Insular Affairs, House
Representatives, 102^nd^ Congress, 2^nd^ Session. On H. R. 1322.
Washington, DC, March 5, 1992.

Institute of Medicine [Fetal Alcohol Syndrome: Diagnosis, Epidemiology,
Prevention, and Treatment.]{.underline} Washington, D. C. : National
Academy Press, 1996.

Jacobson, J. W. et. al. [Community Living for People with Developmental
and Psychiatric Disabilities]{.underline}. Baltimore, MD: Johns Hopkins
University Press, 1992.

Johnson, T. and Hughes, T. L. Reliability and concurrent validity of the
CAGE screening questions among lesbians. Under review, [Journal of
Substance Abuse Treatment.]{.underline}

Jones, K. L. "Fetal Alcohol Syndrome. " [Pediatrics in
Review]{.underline}. 8 (1986) 122-126.

Jones, K. L. and Smith, D. W. "Recognition of the Fetal Alcohol Syndrome
in Early Infancy. " [Lancet]{.underline}. 1973.

Kahn, T. [Pathways]{.underline}. Brandon, VT: Safer Society Press, 1998.

\-\--[Roadmaps to Recovery]{.underline}. Brandon, VT: Safer Society
Press, 1999.

Kapp, F. M. E. ; O'Malley, K. D. [Watch for the Rainbows.]{.underline}
Calgary, Alberta: Frances Kapp Education, 2001.

Keane, T. M. Clinical perspectives on stress, traumatic stress, and PTSD
in children and adolescents [Journal of School Psychology]{.underline},
34, 1996, pg 193-197.

Keane, Terence M; Weathers, Frank W; Kaloupek, Danny G. Psychological
assessment of post-traumatic stress disorder. [PTSD Research
Quarterly]{.underline}, 3, 1992, 4, pg 1-7.

Kelleman, T. "Starz" website, 2002

Kleinfeld, J. [Fantastic Antoine Succeeds]{.underline}. United States:
University of Alaska Press, 1993.

Kleinfeld, J. [Fantastic Antoine Grows Up]{.underline}. United States:
University of Alaska Press, 2000.

Kopera-Frye, K. , Carmichael-Olson, H. , and Streissguth, A. P.
"Teratogenic Effects of Alcohol on Attention. " [Attention, Development,
and Psychopathology]{.underline}. New York: NY: Guilford Press, 1997,
171-204.

Kopera-Frye, K. , Dehaene, S. , and Streissguth, A. P. "Impairments of
Number Processing Induced by Prenatal Alcohol Exposure. "
[Neuropsychologia]{.underline}. 34 (12) 1996, 1187-1196.

Kopera-Frye, K. , Tsewenaldin, P. , and Streissguth, A. P. "Preventing
FAS by Empowering Native American Chemical Dependency Counselors. " [The
I. H. S. Primary Care Provider]{.underline}. 19(4) 1994, 66-69.

Krepelin, E. [Sound and Articulation Activities for Children with
Speech-Language Problems.]{.underline} West Nyack, New York: The Center
for Applied Research Education, 1996.

Krebill, J. , and Taylor J. [A Teaching Guide to Preventing Adolescent
Sexual Abuse]{.underline}. Santa Cruz, CA: ETR Associates, 1988.

LaDue, R. A. "Coyote Returns: Twenty Sweats Does Not an Indian Make. "
[Women in Therapy]{.underline}. 15 (1994) 93-111.

LaDue, R. A. [A Practical Native American Guide for Caregivers of
Children, Adolescents, and Adults with Fetal Alcohol Syndrome and Fetal
Alcohol Related Conditions.]{.underline} Rockville, MD: Indian Health
Service, 2000.

LaDue, R. A. , Streissguth, A. P. , and Randels, S. P. "Clinical
Considerations Pertaining to Adolescents and Adults with Fetal Alcohol
Syndrome. " Sonderegger, T. B. (Ed. ) [Perinatal Substance Abuse:
Research Findings and Clinical Implications]{.underline}. Baltimore, MD:
Johns Hopkins U. Press, 1992, 104-131.

LaDue, R. A. , Dunne, T. "Capacity and FAS. " [The FEN Pen]{.underline}.
5(1) 1996, 2-6.

\-\--"FAS and the Decision to Decline. " [The FEN Pen]{.underline}. 5(2)
1996, 2-6.

\-\--"FAS and Sentencing. " [The FEN Pen]{.underline}. 7(2) 1996, 1-6.

\-\--"Issues in the Legal Realm: Fetal Alcohol Syndrome and the Decision
to Decline. " [The FEN Pen]{.underline}. 4(2) 1995, 2-6.

\-\--"Legal Issues and FAS. " [The Challenge of Fetal Alcohol Syndrome:
Overcoming Secondary Disabilities]{.underline}. Streissguth, A. P. and
Kantor, J. (Eds. ) Seattle, WA: U. of Washington Press, 1997.

\-\--"Legal Issues and Fetal Alcohol Syndrome. " [The FEN
Pen]{.underline}. 3 1995, 6-7.

LaDue, R. A. , Hartness, C. L. [Journey through the Healing
Circle.]{.underline} Olympia, WA: DSHS, 2001.

LaDue, R. A. , Schacht, R. M. , Halverson-Tanner, P. , McGowan, M.
[Fetal Alcohol Syndrome: A Manual to Aid in Vocational
Rehabilitation]{.underline}. Flagstaff, AZ: Northern Arizona U. , 1999.

LaDue, R. A. [Psychosocial Needs Associated with Fetal Alcohol Syndrome:
Practical Guidelines for Parents and Caregivers]{.underline}. Seattle,
WA: U. of Washington, 1993.

Lawrence, K. E. , (Ed. ) Niemeyer, S. [Caregiver Education Guide for
Children with Developmental Disabilities]{.underline}. 1994.

Laws, D. R. , O'Donohue, W. (Eds. ) [Sexual Deviance.]{.underline} New
York: The Guilford Press, 1997.

Levitt, S. [Basic Abilities: A Whole Approach: A Developmental Guide for
Children with Disabilities]{.underline}. Chicago, IL: Independent
Publishing Group, 1997.

Lewis, T. J. , Colvin, G. , Sugai, G. (in press). The effects of
pre-correction and active supervision on the recess behavior of
elementary school students. [School Psychology Quarterly]{.underline}.

Lewis, T. J, Sugai, G. , Colvin, G. Reducing problem behavior through a
school-side system of effective behavioral support: Investigation of a
school-wide social skills training program and contextual interventions.
[School Psychology Review]{.underline}, [27]{.underline} (1998),
446-459.

Linehan, M. [Cognitive-Behavioral Treatment of Borderline Personality
Disorder.]{.underline} New York: Guilford Press, 1993.

Little, B. B. , Snell, L. M. , Rosenfeld, C. R. , Gilstrap, L. C. , and
Grant, N. F. "Failure to Recognize Fetal Alcohol Syndrome in Newborn
Infants. " [American Journal of Dis. Child]{.underline}. 144 (1990)
1142-1146.

Little, R. E. , and Streissguth, A. P. [Alcohol Use and Its
Consequences: Fetal Alcohol Syndrome.]{.underline} Hanover, NH:
Dartmouth Medical School Project Cork, 1988.

Little, R. E. and Streissguth, A. P. "Effects of Alcohol on the Fetus:
Impact and Prevention. " [Canadian Medical Association
Journal]{.underline}. 125 (1981) 159-164.

\-\--"Reducing Fetal Alcohol Effects: The Seattle Pregnancy and Health
Program. " Majewski, F. (Ed. ) [Die Alkohol-Embryopathie]{.underline}.
Frankfurt/Main: Umwelt & Medicin Verlagsgesellschaft mbH,1987, 197-203.

Lubinski, R. , Frattali, C. [Professional Issues in Speech-Language
Pathology and Audiology (2^nd^ Edition).]{.underline} Canada: Singular,
2001.

Luthar, S. S. , Burack, J. A. , Cicchetti, D. , Weisz, J. R. (Eds. )
[Developmental Psychopathology.]{.underline} Cambridge: Cambridge
University Press, 1997.

Malbin, D. B. "Stereotypes and Realities. " Kleinfelter, J. and Wescott,
S. (Eds. ) [Fantastic Antoine Succeeds]{.underline}. United States:
University of Alaska Press, 1993.

Mannuzza, S. , Klein, R. G. , Bessler, A. , Malloy, P. , and La Padula,
M. "Adult Outcome of Hyperactive Boys: Educational Achievement,
Occupational Rank, and Psychiatric Status. " [Archives of General
Psychiatry]{.underline}. 50 (1993) 565-576.

Martin, D. C. , Martin, J. C. , Streissguth, A. P. , and Lund, C. A.
"Sucking Frequency and Amplitude in Newborns as a Function of Maternal
Drinking and Smoking. " Galanter, M. (Ed. ) [Currents in
Alcoholism]{.underline}. vol. 5 New York: NY: Grune & Stratton, 1979,
359-366.

May, P. A. "The epidemiololgy of alcohol abuse among American Indians:
The mythical and real properties. " [American Indian Culture and
Research Journal.]{.underline} 18: (2), 1996, pp. 121-143.

Masis, K. Personal Communication, 2002.

McCreight, B. [Recognizing and Managing Children with Fetal Alcohol
Syndrome/Fetal Alcohol Effects: A Guidebook]{.underline}. Washington,
DC: Child Welfare League of America, 1997.

McClannahan, L. E. ; Krantz, P. J. In Search of Solutions to Prompt
Dependance. In: D. M. Baur E. M. Peindston (Eds) [Environment and
Behavior]{.underline}. Boulder, CO: Westview Press, 1997

McKinney v. State, No. 64783-6, SUPREME COURT OF WASHINGTON, 134 Wn. 2d
388; 950 P. 2d 461; 1998 Wash. LEXIS 11, May 28, 1997, Oral Argument,
February 5, 1998.

Meloy, J. R. [The Psychopathic Mind : Origins, Dynamics, and
Treatment]{.underline} Northvale, N. J. : J. Aronson, 1988.

Meyer, W. J. , Cole, C. & Emory, E. (1992). \"Depo Provera treatment for
sex offending behavior: an evaluation of outcome\". [Bulletin of the
American Academy of Psychiatry & Law]{.underline}*, 20*, 249-59.

Mihesuah, D. A. [American Indians: Stereotypes & Realities]{.underline}.
Atlanta, GA: Clarity Press, 1997.

Miller, J. [American Indian Families]{.underline} (True Book) Danbury,
CN: Children's Press, 1997.

Moise, L. [Barbra and Fred Grownups Now, Living Fully with Developmental
Disabilities]{.underline}. Fort Bragg, CA: Lost Coast Press, 1997.

Morse, B. Diagnosis and thereafter: What we know now and where we are
going. In: [Fantastic Antoine Grows Up.]{.underline} J. Kleinfeld, B.
Morse, S. Wescott (Eds. ) Fairbanks, AK: University of Alaska Press,
2000.

Nelson, L. M. Personal communication, Sept. 2001.

Nevitt, A. "Fetal Alcohol Syndrome. " [Drug Abuse Prevention
Library]{.underline}. New York: NY: The Rosen Group Publishing Group,
Inc. , 1995.

Nezu, C. M. [Psychopathology in Persons with Mental Retardation:
Clinical Guidelines for Assessment and Treatment]{.underline}.
Champaign, IL: Research Press, 1992.

Novick, N. J. and Streissguth, A. P. "Part 2: Thoughts on Treatment of
Adults and Adolescents Impaired by Fetal Alcohol Exposure. " [Treatment
Today]{.underline}. 7(4) 1995, 20-21.

Perske, R. [Unequal Justice? What Can Happen When People with Mental
Retardation or Other Developmental Disabilities Encounter the Criminal
Justice System]{.underline}. Nashville, TN: Abdingdon Press, 1991.

Piaget, J. "Intellectual Evolution from Adolescence to Adulthood. " P.
H. Mussen (Ed. ). [Carmichael's Manual on Child Psychology]{.underline}.
3^rd^ ed. Vol. 1. New York: Basic Books, 1980.

\-\--[The Moral Judgment of the Child]{.underline}. Glencoe, IL: The
Free Press, 1932.

\-\--[The Origins of Intelligence in Children]{.underline}. New York:
International Press, 1952.

Plake, B. S. , Impara, J. C. , Murphy, L. L. [The Fourteenth Mental
Measurements Yearbook.]{.underline} Lincoln, NE: University of Nebraska,
2001.

Prentky, R. A. (1997). Arousal reduction in sexual offenders: A review
of antiandrogen interventions. [Sexual Abuse: A Journal of research and
Treatment]{.underline}*, 9*, 335-348.

Ratliffe, K. T. [Clinical Pediatric Physical Therapy: A Guide for the
Physical Therapy Team.]{.underline} Philadelphia: Mosby, 1998.

Revised Code of Washington (RCW 10. 77). Olympia, WA: State of
Washington.

Rosett, H. L. "A Clinical Perspective of the Fetal Alcohol Syndrome. "
[Alcoholism: Clinical & Experimental Research]{.underline}. 4 (1980)
119-122.

Russell, M. , Czarnecki, D. M. , Cowan, R. , McPherson, E. , and Mudar,
P. "Measures of Maternal Alcohol Used as Predictors of Development in
Early Childhood. " [Alcoholism: Clinical & Experimental
Research]{.underline}. 15 (1991) 991-1000.

Ryan, G. ; Lane, S. (eds. ) [Juvenile Sex Offenders.]{.underline} San
Francisco, CA: Jossey-Bass, 1997.

Salter, A. [Psychological Assessment of Sexually Abused Children,
Adolescents and Their Parents.]{.underline} San Francisco, CA: Sage
Publications, 1995.

Sattler, J. M. [Assessment of Children's Intelligence.]{.underline} New
York: W. B. Sounders Company,1974.

Scher, M. S. , Richardson, G. A. , Coble, P. A. , Day, N. L. , and
Stoffer, D. S. "The Effects of Prenatal Alcohol and Marijuana Exposure:
Disturbances in Neonatal Sleep Cycling and Arousal. " [Pediatric
Research]{.underline}. 24 (1988) 101-105.

Schleien, S. J. (Contributor) et. al. [Lifelong Leisure Skills and
Lifestyles for Persons with Developmental Disabilities]{.underline}.
Baltimore, MD: Paul H. Brooks Publishing Co. , 1995.

Shaywitz, S. E. , Caparulo, B. K. , and Hodgson, E. S. "Developmental
Language Disability as a Consequence of Prenatal Exposure to Ethanol. "
[Pediatrics]{.underline}. 68 (1981) 850-855.

Shaywitz, S. E. , Cohen, D. J. , and Shaywitz, B. A. "Behavior and
Learning Difficulties in Children of Normal Intelligence Born to
Alcoholic Mothers. " [Journal of Pediatrics]{.underline}. 96 (1980)
978-982.

Shelov, S. P. "Caring for Your Baby and Young Child: Birth to Age 5. "
[The American Academy of Pediatrics]{.underline}. New York, NY: Bantam
Books, Inc. , 1993.

Shelov, M. D. , FAAP, S. P. (Ed. )[The Complete and Authoritative Guide:
Caring for Your Baby and Young Child: Birth to Age 5]{.underline}. New
York: Bantam, 1991.

Smith, D. W. [Recognizable Patterns of Human Malformations: Genetic,
Embryonic, and Clinical Aspects]{.underline}. 3^rd^ ed. Philadelphia:
PA: W. B. Saunders, 1982.

Soby, J. M. [Prenatal Exposure to Drugs/Alcohol: Characteristics and
Educational Implications of Fetal Alcohol Syndrome and Cocaine --
Polydrug Effects]{.underline}. Springfield, IL: Charles C. Thomas Press,
1996.

Sohberg, M. M. and Mateer, C. A. "Effectiveness of an Attention-Training
Program. " [Journal of Clinical & Experimental
Neuropsychology]{.underline}. 9 (1987) 117-130.

Sorkin, A. L. [The Urban American Indian]{.underline}. Lexington, MA:
Lexington Books, 1978.

Sparrow, S. S. , Balla, D. A. , and Cicchetti, D. V. [Vineland Adaptive
Behavior Scales]{.underline}. Cedar Pines, MN: American Guidance
Service, 1984.

Stengle, L. J. [Laying Community Foundations: For Your Child with a
Disability: How to Establish Relationships That Will Support Your Child
After You're Gone]{.underline}. Bethesda, MD: Woodbine House, 1996.

Stevens, S. J. and Wexler, H. K. , eds. [Women and Substance Abuse:
Gender Transparency]{.underline}. New York: Haworth Press, 1998

Streissguth, A. P. Personal Communication, 1984.

Streissguth, A. P. Personal Communication, 1992

Streissguth, A. P. "The 1990 Betty Ford Lecture: What Every Community
Should Know about Drinking During Pregnancy and the Lifelong
Consequences for Society. " [Substance Abuse]{.underline}. 12(3) 1991)
14-127.

\-\--[Fetal Alcohol Syndrome: A Guide for Families and
Communities]{.underline}. Baltimore, MD: Paul H. Brookes Publishing Co.
, 1997.

\-\--"A Long-Term Perspective on FAS. " [Alcohol Health & Research
World]{.underline}. 18(1) 1994, 74-81.

Streissguth, A. P. , Aase, J. M. , Clarren, S. K. , Randels, S. P. ,
LaDue, R. A. and Smith, D. F. "Fetal Alcohol Syndrome in Adolescents and
Adults. " [Journal of the American Medical Association]{.underline}. 265
(1991) 1961-1967.

Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F. L.
[Understanding the Occurrence of Secondary Disabilities in Clients with
Fetal Alcohol Syndrome and Fetal Alcohol Effects]{.underline}. Seattle,
WA: University of Washington, 1996.

Streissguth, A. P. , Barr, H. M. , Sampson, P. D. , and Bookstein, F. L.
"Prenatal Alcohol and Offspring Development: The First 14 Years. " [Drug
& Alcohol Dependence]{.underline}. 36 (1994) 89-99.

Streissguth, A. P. , Barr, H. M. , Sampson, P. D. , Bookstein, F. L. ,
and Darby, B. L. "Neurobehavioral Effects of Prenatal Alcohol. Part I,
II, & III: Research Strategy. " [Neurotoxicology and
Teratology]{.underline}. 1(5) (1989) 461-476.

Streissguth, A. P. and Kanter, J. (Eds. ) [The Challenge of Fetal
Alcohol Syndrome: Overcoming Secondary Disabilities]{.underline}.
Seattle, WA: U. of Washington Press, 1997.

Streissguth, A. P. , LaDue, R. A. , Randels, S. P. [A Manual on
Adolescents and Adults with Fetal Alcohol Syndrome with Special
Reference to American Indians]{.underline}. 2^nd^ ed. Albuquerque, NM:
Indian Health Service, 1989.

Streissguth, A. P. , Moon-Jordan, A. , and Clarren, D. K. "Alcoholism in
Four Patients with Fetal Alcohol Syndrome: Recommendations of Care. "
[Alcoholism Treatment Quarterly]{.underline}. 13(2) 1995, 89-103.

Streissguth, A. P. and Novick, N. J. "Part 1: Identifying Clients with
Possible Fetal Alcohol Syndrome or Fetal Alcohol Effects in the
Treatment Setting. " [Treatment Today]{.underline}. 7(3) 1995, 14-15.

Streissguth, A. P. , and O'Malley, K. D. "Fetal Alcohol Syndrome/Fetal
Alcohol Effects: Secondary Disabilities and Mental Health Approaches. "
[Treatment Today]{.underline}. 9(2) 1997, 16-17.

Tanner, P. A Demonstration Classroom for Young Children with FAS. [The
Challenge of Fetal Alcohol Syndrome. Streissguth, A. P. , Kantor, J.
(Eds. ) Seattle, WA : University of Washington Press, 1997.]{.underline}

Taylor-Greene, S. , Brown, D. , Nelson, L. , Longton, J. , Gassman, T. ,
Cohen, J. , Swartz, J. , Horner, R. H. , Sugai, G. , Hall, S.
School-wide behavioral support: Starting the year off right. [Journal of
Behavioral Education]{.underline}, 7, (1997) 99-112.

Tupin, J. P. , Shader, R. I. , and Harnett, D. S. (Eds. ) [Handbook of
Clinical Psychopharmacology]{.underline}. 2^nd^ ed. Dunmore, PA: Jason
Aronson, Inc. , 1989.

Underhill, B. L. , Finnegan, D. G. (Ed's. ) [Chemical Dependency: Women
at Risk.]{.underline} New York: Harrington Park Press, 1996.

Valliant, P. M. , Asu, M. E. , and Howitt, R. "Cognitive Styles of
Caucasian and Native Indian Juvenile Offenders. " [Psychological
Reports]{.underline}. 52 (1983) 87-92.

Vannicelli, Ma (1984) Treatment Outcome of Alcoholic Women: The State of
the Art in Relation to Sex Bias and Expectancy Effects, in [Alcohol
Problems in Women]{.underline}, ed. Sharon C. Wilsnack and Linda J.
Beckman, Alcohol Problems in Women.

Vogel, V. J. [American Indian Medicine (Civilization of the American
Series)]{.underline}. Vol. 95, Norman, OK: U. of Oklahoma Press,. 1990.

Walker, R. D; LaDue, R. A. An integrative approach to American Indian
Mental Health. [Ethnic Psychiatry]{.underline} C. B. Wilkinson (Ed. )
New York: Plenum Press, 1986.

Waller, A. Personal Communication, 2001.

Watson, R. R. [Substance Abuse During Pregnancy and Childhood (Drug and
Alcohol Abuse Reviews)]{.underline}. Totowa, NJ: Humana Press, 1995.

Weathers, L. W. and Loughlin, K. [ADHD: A Path to Success]{.underline}.
Spokane, WA: Ponderosa Press, 1998.

Wechsberg, W. M. , Craddock, S. G. , and Hubbard, R. L. How are women
who enter substance abuse treatment different than men?: A gender
comparison from the Drug Abuse Treatment Outcome Study (DATOS). In:
Stevens, S. J. and Wexler, H. K. , eds. *Women and Substance Abuse:
Gender Transparency*. New York: Haworth Press, 1998. pp. 97--115.

Wender, P. H. [The Hyperactive Child, Adolescent and Adult]{.underline}.
New York, NY: Oxford University Press, 1987.

West, W. R. , Kidwel, C. [All Roads are Good Roads: Native Voices on
Life and Culture (Native American Studies)]{.underline}. Washington, DC:
Smithsonian Institute Press, 1994.

Wexler, H. K. ; Cuadrado, M. ; Stevens, S. Residential treatment for
women: behavioral and psychological outcomes. In: Stevens, S. J. and
Wexler, H. K. , eds. [Women and Substance Abuse: Gender
Transparenc]{.underline}*y*. New York: Haworth Press, 1998. pp. 213-233.

White, J. L. [The Troubled Adolescent]{.underline}. New York, NY:
Pergamon Press, 1989.

Wilkinson, Charles F. , [American Indians, time, and the law: Native
societies in a modern constitutional democracy]{.underline}. New Haven:
Yale University Press, 1987.

Williams, R. L. , and Karacan, L. [Sleep Disorders: Diagnosis and
Therapy]{.underline}. New York, NY: Johns Wiley & Sons, 1978.

Wilsnack, R. W. , Wilsnack, S. C. [Gender and Alcohol: Individual and
Social Perspectives.]{.underline} New Brunswick, NJ: Rutgers Center of
Alcohol Studies, 1997.

Woolis, DD Family works: Substance abuse treatment and welfare reform,
[Public Welfare]{.underline}*,* 1998.

Zitkala, S. A. [American Indian Stories]{.underline}. Lincoln, NE: U. of
Nebraska Press, 1921.

**Appendix 1:**

**Developmental Matrices for Intervention Planning**

**for**

**Individuals with Alcohol-Related Birth Defects**[^319]**,**[^320]

**Areas of Focus**

+-----+----------+-----------+------------+------------+------------+
|     | **       | **Psych   | *          | **Educ     | **Legal**  |
|     | Health** | osocial** | *Family/** | ational/** |            |
|     |          |           |            |            |            |
|     |          |           | **P        | **Vo       |            |
|     |          |           | arenting** | cational** |            |
+-----+----------+-----------+------------+------------+------------+
| *   |          |           |            |            |            |
| *Bi |          |           |            |            |            |
| rth |          |           |            |            |            |
| to  |          |           |            |            |            |
| 5   |          |           |            |            |            |
| Y   |          |           |            |            |            |
| ear |          |           |            |            |            |
| s** |          |           |            |            |            |
+-----+----------+-----------+------------+------------+------------+
| **6 |          |           |            |            |            |
| -11 |          |           |            |            |            |
| Y   |          |           |            |            |            |
| ear |          |           |            |            |            |
| s** |          |           |            |            |            |
+-----+----------+-----------+------------+------------+------------+
| *   |          |           |            |            |            |
| *12 |          |           |            |            |            |
| -17 |          |           |            |            |            |
| Y   |          |           |            |            |            |
| ear |          |           |            |            |            |
| s** |          |           |            |            |            |
+-----+----------+-----------+------------+------------+------------+
| **  |          |           |            |            |            |
| 18+ |          |           |            |            |            |
| Y   |          |           |            |            |            |
| ear |          |           |            |            |            |
| s** |          |           |            |            |            |
+-----+----------+-----------+------------+------------+------------+

**Developmental Matrices for Intervention Planning**

**for**

**Individuals with Alcohol-Related Birth Defects**

**Interventions**

+-----+------------+-----------+------------+-----------+-----------+
|     | **Health** | **Psych   | *          | **Educa   | **Legal** |
|     |            | osocial** | *Family/** | tional/** |           |
|     |            |           |            |           |           |
|     |            |           | **P        | **Voc     |           |
|     |            |           | arenting** | ational** |           |
+-----+------------+-----------+------------+-----------+-----------+
| *   |            |           |            |           |           |
| *Bi |            |           |            |           |           |
| rth |            |           |            |           |           |
| to  |            |           |            |           |           |
| 5** |            |           |            |           |           |
|     |            |           |            |           |           |
| **Y |            |           |            |           |           |
| ear |            |           |            |           |           |
| s** |            |           |            |           |           |
+-----+------------+-----------+------------+-----------+-----------+
| **6 |            |           |            |           |           |
| -11 |            |           |            |           |           |
| Y   |            |           |            |           |           |
| ear |            |           |            |           |           |
| s** |            |           |            |           |           |
+-----+------------+-----------+------------+-----------+-----------+
| *   |            |           |            |           |           |
| *12 |            |           |            |           |           |
| -17 |            |           |            |           |           |
| Y   |            |           |            |           |           |
| ear |            |           |            |           |           |
| s** |            |           |            |           |           |
+-----+------------+-----------+------------+-----------+-----------+
| **  |            |           |            |           |           |
| 18+ |            |           |            |           |           |
| Y   |            |           |            |           |           |
| ear |            |           |            |           |           |
| s** |            |           |            |           |           |
+-----+------------+-----------+------------+-----------+-----------+

These matrices are used in screening and diagnostic clinics to provide a
summary of concerns and services of the individual patient. They are
completed during the diagnostic evaluation and provided to the
individual/family at the end of the evaluation.

**[Please Note:]{.underline}**

LaDue, Carmichael Olsen, Clarren and Beck originally developed these
matrices. The ones used in this manual are modified from the originals.

**Appendix 2:**

**Case Summation Information**

The case summation form in this appendix is a compilation of the
diagnostic materials developed by Astley and Clarren[^321] as well the
clinical information that has been suggested for inclusion by research
from a variety of sources, e. g. Streissguth,[^322] Coles,[^323]
Burgess,[^324] LaDue,[^325] and Tanner,[^326].

  ----------- ----------- ----------- ----------- ----------- -----------
  Growth\*    Face\*      Brain\*     ETOH\*      Prenatal    Postnatal

                                                              

                                                              

                                                              

                                                              
  ----------- ----------- ----------- ----------- ----------- -----------

\*Rated by level of severity from 1 (not present) to 4 (severe) - to be
used for screening and referral. Only trained physicians should be
making a diagnosis of FASD.

Family History:

School History:

Testing Scores:

Medical History:

Behavioral Concerns:

Legal History:

Goals for Youth While in Detention:

Community Services Needed Upon Release from Detention:

Team Members:

Community Contacts:

**Appendix 3:**

**Diagnoses Commonly Associated**

**with**

**Fetal Alcohol Syndrome and Fetal Alcohol Spectrum Disorder**

The following diagnoses are those frequently assigned to children,
adolescents, and adults with FAS and FASD. There are few formal studies
that detail the prevalence of FASD associated with these disorders or
vice versa. The early childhood background of many patients and what
clinical data are available suggest some diagnoses such as Posttraumatic
Stress Disorder, Reactive Attachment Disorder; and Attention Deficit
Hyperactive Disorder may very well be common among patients with FASD.
But none of these diagnoses would necessarily open the door to
Developmental Disabilities Services. For those with ADHD, some special
education and vocational services might be available, but most
individuals with FASD are far more disabled throughout their lifespan
then those with ADHD alone.

The criteria for these diagnoses are generally based on behavioral
observation and the person's self-report. Many different processes and
environmental factors as well as brain damage and dysfunction can cause
these behaviors and problems. A comprehensive family and prenatal
history should be taken prior to assignment of any of these diagnoses.
Genetic, environmental, social, and cultural factors should also be
considered. While FASD is not necessarily a causal agent in any of the
disorders listed, it can change the clinical presentation and
articulation of symptoms by the patient.

Having one disorder does not rule out the possibility of another. In the
experience of the author, and by many anecdotal reports available,
multiple diagnoses appear to be the norm rather than the exception. This
manual has repeatedly discussed the value of the multi-disciplinary
treatment team. The team should include someone familiar with the
possible effects of prenatal alcohol exposure and
psychiatric/psychological problems and what role prenatal alcohol
exposure can play in terms of clinical presentation and treatment
options.

The following list is not exhaustive, but intended as a guide to help
health care providers and schools acquire services for children. The
majority of children with FASD may not ever be diagnosed with any of the
ailments listed below. With few exceptions, having one of the diagnoses
listed below may be a means of acquiring services for a health impaired
child if the state or district does not, as most do not, recognize FASD
as a developmental disability in and of itself. However, most of these
diagnoses other than Asperger's Syndrome and autism would still preclude
Developmental Disability Services. The Diagnostic and Statistical
Manual, Fourth Edition (DSM-IV) is the primary source of the diagnostic
information listed below. For additional information, the reader is
referred to the manual references.

An excellent resource for understanding developmental psychopathology is
by Luthar, Burack, Cicchetti, and Weisz (1997). [^327] It is interesting
to note that, in this outstanding resource, while cocaine exposure and
Fragile X are discussed, the devastating effects of prenatal alcohol
exposure and its' links to mental health issues and diagnoses are not.

[Antisocial Personality Disorder:]{.underline}[^328],[^329]

The hallmark of this diagnosis is a "pervasive" pattern of violation of
and disregard for the rights of others. According to DSM-IV
diagnosis,[^330] people with an antisocial personality disorder "do not
conform to social rules and expectations. " They are repeatedly involved
in actions that can lead to arrest. Continual lying or attempting to
mislead others for "personal profit or pleasure" is also diagnostic
criteria of an antisocial personality disorder along with higher levels
of impulsive behavior. Failing to plan or have a concern for possible
outcomes are commonly seen in people with FASD, but are also included
when assessing for an antisocial personality disorder.

Greater "irritability, aggressiveness, and a reckless disregard for the
safety of one's self or others and irresponsibility as shown by
difficulty in sustaining work or honoring obligations" were among the
behaviors of concern listed in the challenging behaviors detailed at the
start of this manual. These issues and concerns are also among the
behavioral criteria for diagnosing antisocial personality disorder.

The person must be 18 years old and the behaviors present since the age
of 15. Evidence of a conduct disorder should also have been present
prior to age 15. These behaviors should not be due to Schizophrenia or a
manic episode.

The assignment of this diagnosis is somewhat troublesome when discussing
late adolescents and adults with FASD. Many of the behaviors and
secondary disabilities are consistent with diagnosis of people not
affected with FASD. It is possible to have FASD and an antisocial
personality disorder, but it is unlikely as individuals with FASD
historically do not have the understanding or social skills to meet this
criteria. Prior to making an ASP diagnosis, it is important to assess
motivation, understanding, and the presence of FASD. For an excellent
discussion on antisocial personality disorder, the reader is directed to
the body of literature generated by Hare, including the Hare Psychopathy
Checklist-Revised [^331] and Meloy. [^332]

[Asperger's Disorder]{.underline}:

Asperger's Disorder is a disorder that is characterized by significant
deficits in the use of nonverbal language and cues as well as
significant delays in forming appropriate peer relationships. This
disorder is more often recognized in children in the latency age period,
but the onset may be earlier. Children, adolescents, and adults with
this disorder often use repetitive motions or have fixed interests and
routines.

There is no apparent delay in language onset or cognitive development.
This disorder does lead to significant impairments in social,
vocational, and other areas of the person's life. Impairment, for most
people, is lifelong. Medication, social skills training, and
psychotherapy may or may not be useful in treating this disorder. A
psychiatrist, psychologist, pediatrician, or other physician or mental
health specialist is generally qualified to make this diagnosis.

Many higher functioning individuals with FASD may look like those with
Aspergers Syndrome; however, most individuals with Aspergers Syndrome
are of normal or above normal intelligence, while many patients with
FASD are of mild mental retardation or borderline IQ.

[Attention Deficit Hyperactivity Disorder
(ADHD)]{.underline}[^333],[^334],[^335]:

This is a diagnosis that is commonly given to children with FASD. A
child or adolescent's inability to concentrate or pay attention
characterizes ADHD. A higher level of physical activity is also seen in
children and adolescents with ADHD than their age-mates. The
difficulties in attending to information, along with the higher level of
activity must cause problems functioning in social, school, or work
activities in order for the child or adolescent to receive this
diagnosis. Impulsivity, being fidgety, and impatience are among the
commonly seen behaviors in children and adolescents with ADHD.
Medication is often used and can be helpful, as is clear, concise, and
consistent structure. [^336]

These problems must be present prior to the age of 7 for ADHD to be
considered an accurate diagnosis. A psychologist, psychiatrist,
pediatrician, or other qualified health professional should make this
diagnosis. If a child is displaying these behaviors, it is important
that they be reported to the caseworker and physician or other health
care worker. These issues need to be addressed as quickly as possible to
prevent increased problems. These behaviors may also be a sign of child
abuse or family problems, which will need to be addressed to ensure a
healthy environment for all family members.

Many individuals with FASD have ADHD symptoms. However, according to
Coles, the attention problems of ADHD and FASD children differ. In
addition, children with FASD have more problems with
social-communication, sensory integration, and fine and gross motor
skills than those with ADHD.

[Autistic Disorder]{.underline}:

The most commonly seen behaviors in a child or adolescent with Autistic
Disorder include significant difficulties in social interactions and
communication. Children with this disorder often do not form bonds with
others. Language is often delayed or absent. Children, adolescents, and
adults with this disorder often show repetitive behaviors such as
finger-shaking, head-banging, and other self-stimulating behaviors. They
have difficulty engaging in play as children and difficulties with
positive social interactions as adolescents and adults. [^337],[^338]

The onset of these problems is prior to age three and is the start of a
behavioral pattern that lasts across the lifespan. Developmental delays
occur early and in almost every aspect of the child's life, although,
some areas of development may appear normal. Early intervention[^339]
along with special schooling and lifelong support are important.
Medications may or may not be useful while behavioral programs often
are. A psychologist, psychiatrist, pediatrician, or other qualified
health professional should make this diagnosis.

Children with FASD often have symptoms similar to children with autism,
i. e. , several social-communication deficits and repetitive behaviors.
In addition, children from both diagnostic groups have sensory
integration issues, resist change, and have significant developmental
delays in multiple areas. However, most autistic children are mentally
retarded and socially withdrawn, while children with FASD are overly
talkative, with empty speech, are gregarious and have mild retardation
to borderline IQs. Autism is the most severe form of pervasive
developmental disorder and most children with FASD fit the criteria for
the milder form of this disorder.

[Borderline Personality Disorder]{.underline}:

This personality disorder is often seen in people who have experienced
some type of early childhood trauma. It is marked by an ongoing pattern
of problems and instability in relationships, moods, and a person's
self-image. Impulsivity, suicidal ideation, reckless behavior without
any apparent concern over outcome, and a high level of difficulty
dealing with interpersonal interactions are commonly seen. They are
often fearful of abandonment and may over-react if they perceive any
type of real or imagined threat. Afterwards, feelings of shame and
embarrassment are seen, but the pattern continues without significant
change.

This diagnosis would enable individuals to receive psychiatric services
and would preclude Developmental Disabilities Services, unless the
individual also was given a developmental disabilities diagnosis.

This disorder is often diagnosed in late adolescence or early adulthood,
most often in females. It can significantly interfere with social,
academic, and vocational functioning, although these problems may
decrease with age.

Medication and psychotherapy are often recommended but, as noted, this
is a pattern of behavior and social interaction that is seen, to some
level, across the lifespan. A psychologist, psychiatrist, or other
qualified health professional should make this diagnosis. For additional
reading on Borderline Personality Disorders, the reader is referred to
Dr. Marsha Linehan's work in this area. [^340] Again, most individuals
with FASD do not have the social intent that creates havoc in the
relationships of BPD -- the disorder appears to require a higher level
of social-cognitive functioning than is commonly seen in FASD.

[Conduct Disorder]{.underline}:

The most commonly described features of this diagnosis include an
ongoing pattern of behavior where the person breaks social rules without
regard for others. Aggressive behavior such as threatening others,
animals or both is one area of concern. Lying or being deceptive along
with ongoing and serious rule breaking is the fourth area of problem
behavior. These behaviors occur in a wide variety of settings, such as
school, home, and the community. These behaviors often are reasons why
the person may be expelled from school, or may cause serious problems at
home, e. g. running away or threatening family members.

This disorder can begin before the age of ten, although, there is
another form that begins in adolescence (after the age of ten). This
disorder can cause significant problems in social, school, and community
functioning. People with conduct disorders often end up in detention or
jail. Early recognition, along with school and family intervention may
be of aid. Medication is often tried, but compliance among people with
conduct disorder is low. A psychologist, psychiatrist, or other
qualified health professional should make this diagnosis.

[Depression]{.underline}:

This disorder is far more common in children and adolescents than is
typically acknowledged. It is a disorder characterized by a depressed
mood most of the time. Children often present as being irritable. Other
signs of depression include a loss of interest in activities, sleeping
too much, losing or gaining weight; feelings of low self-worth and low
self-esteem, and difficulties concentrating and paying attention may
also be seen. Children with depression may be aggressive and angry.
Suicidal thoughts and attempts can also occur. [^341],[^342],[^343]

This is a serious disorder that can occur throughout life and can be
related to losses in the person's life. It may also have a genetic
basis. There are many types of medications available to treat
depression. Psychotherapy can also be useful. A psychologist,
psychiatrist, or other qualified health professional should make this
diagnosis. Depression may be a secondary disorder to FASD, particularly
in adolescence and adulthood.

[Learning Disorders]{.underline}:

These disorders include problems learning in the areas of reading,
mathematics, and written expression. They are characterized by the
person having significantly lower standardized test scores than their
age-mates and there being a large difference between a standard IQ score
and scores on academic achievement tests. They can be caused by mental
health problems, difficulties in sensory input and by cultural/ethnic
differences in learning patterns. [^344] All of these factors must be
taken into account when making a diagnosis or providing treatment.

The course of these disorders can be mild to severe. Some children with
learning disorders or those with intensive, early, and appropriate
interventions can make progress. For some people, these are permanent
disorders affecting the person's academic, vocational, and social
functioning throughout their life. A school psychologist, clinical
psychologist, psychiatrist, or other qualified specialist can make this
diagnosis. If there is a history of head trauma or other medical
problems (e. g. encephalitis), a physician should be on the diagnostic
team.

Most individuals with FASD have one or more specific learning
disabilities as part of a pervasive developmental disorder syndrome.
Such a diagnosis may be helpful if the individual is specifically more
impaired in one academic area, i. e. , dyslexia, mathematics, than
others

[Oppositional-Defiant Disorder]{.underline}:

The main components of this disorder include an ongoing pattern of
defiant, negative, and angry behavior towards people in authority.
Refusal to comply is also common. Children with this disorder often have
temper tantrums, argue constantly with the adults in their life,
deliberately irritate others, refuse to take responsibility for their
own actions, and can be described as "mean". Parents and caregivers also
frequently mention areas of concern in extreme stubbornness, not wanting
to follow directions, and a continual testing of limits.

Children with FASD may become frustrated and irritated when over
stimulated. They may be disturbed when they cannot understand what is
being asked of them. Children with FASD often do not have the behavioral
repertoire to respond with a variety of options. In situations where
they have to generate their own answers or responses rather than having
information given to them in simple and understandable ways, they are
likely to be even more aggravated.

Children with this disorder often have poor or challenging peer
relationship problems. They also have limited insight into their
behavior, feeling that they are "right" in their actions. Medication may
or may not be helpful. This disorder may be a precursor to what is seen
in adults as an antisocial personality disorder. A psychologist,
psychiatrist, or other qualified mental health specialist should make
this diagnosis.

[Pica:]{.underline}

Pica is an unusual disorder that consists of the child or adult
consuming "non-nutritive" substances. According to the DSM-IV, the
substances commonly consumed change across the lifespan. Pica is
frequently associated with mental retardation and can be seen in other
mental disorders such as pervasive developmental disorders. It is
recommended that consumption of non-nutritive substances be assessed
separately from an underlying issue of mental retardation.

[Posttraumatic Stress Disorder (PTSD)]{.underline}:

Posttraumatic Stress Disorder (PTSD) is a disorder associated with
severe trauma in a person's life: something that involves a serious
threat to the person's well being, e. g. , serious injury or death. It
can also arise from observing another person experience such a threat.
PTSD is commonly associated with sexual or physical abuse, particularly
if it occurs at an early age. However, this disorder can arise at any
point in life if the person is exposed to severe trauma.

The person with PTSD may feel as if the trauma is happening again,
complete with anxiety, increased physical arousal, and fear. Recurrent
and intrusive thoughts and dreams are commonly experienced. Anything
that resembles the trauma can cause the person to feel agitated or
anxious. Memory problems and not being able to recall the specific
traumatic event are often complaints of people with PTSD, as are a
"sense of doom," not feeling as if one will live long, and feeling
emotionally disconnected from others. [^345],[^346] Sleeping problems
(other than dreams) are also commonly reported.

In moderate to severe cases, the person can have significant impairment
in social, academic, vocational, and daily living activities.
Depression, suicidal ideation, survivor guilt, poor concentration, and
anxiety are often reported. Medication as well as psychotherapy is often
helpful. A qualified mental health specialist should make this
diagnosis.

As noted, many children with FASD have been in neglectful and abusive
situations. This may not just be in a home with the birth parents. A sad
truth is that many children are abused while in the care of foster
parents. This problem has been so pervasive that there have been
lawsuits against states, leading to changes in state statutes. [^347]
Early childhood trauma and abuse often lead to children acting out in a
variety of ways including with sexually inappropriate behavior,
aggression, withdrawal, and volatile moods. These problems can last a
lifetime and affect people's lives in a multitude of ways.

Behaviors such as sexual inappropriateness, aggression, withdrawal and
acting out are also characteristic of FASD, and the neurological
dysfunction that causes these disorders.

[Reactive Attachment Disorder:]{.underline}

This disorder is distinguished by "markedly disturbed and
developmentally inappropriate social relatedness. "[^348] The diagnosis
is typically divided into two presentations. The first is the "Inhibited
Type" where the child is unlikely to initiate or respond to common
social interactions. The other presentation is the "Dis-inhibited Type"
where the child shows little sense of boundaries, poor social skills, or
a lack of "selectivity" with whom the child attempts to bond. The
primary source of this disorder is postulated to be poor care and
"persistent disregard" for the child's emotional, physical, and mental
needs. Change in residential care, as in multiple moves from foster home
to foster home, or from foster care back to the mother's/father's care
and then out again, is thought to be an etiology of this disorder.

[Receptive-Expressive Language Disorder]{.underline}:

This disorder is based on standardized test scores (e. g. IQ test
scores), as well as on behavior. It is characterized by delays and
impairment in receptive language skills where the child has difficulty
"translating" language into usable information and expressive language
skills where the child has a limited vocabulary, difficulty producing
words and using sentences, and not using tenses correctly.

Onset is generally before the age of four. However, this disorder can
occur if there is some type of physical trauma later in childhood, e. g.
a head injury. With intervention, some children can develop normal
language. This may not occur in children with significant brain damage.
If the disorder is severe enough, it may lead to a learning disorder. A
school psychologist, clinical psychologist, psychiatrist, or other
qualified specialist should make this diagnosis. If there is a head
injury or other medical problem (e. g. encephalitis), a physician should
be on the diagnostic team.

[Tourette's Disorder:]{.underline}

This disorder is defined by multiple motor and vocal tics. Such tics can
appear concurrently or separately. It is thought to be neurological in
etiology and begins prior to the age of 18. These tics occur on a daily
basis with no more than 3 consecutive months of the person being
tic-free. In diagnosing Tourette's Disorder, it needs to be determined
that the tics are not from another underlying etiology, e. g.
Huntington's Disorder.

**Appendix 4:**

**Assessment and Screening Tools**

This section is an overview of a variety of screening and assessment
tools that can be useful in assessing clients with FASD over a variety
of situations. Only a limited number of assessment tools are listed in
the following section. These tests should be administered only by
trained, certified, and licensed professionals. For a complete detailing
of these instruments and others, the reader is referred to [The
Fourteenth Mental Measurements Yearbook.]{.underline} [^349]

Adaptive Behavior Evaluation Scale: Stephen B. McCarney, Hawthorne
Educational Services, Inc.

AD/HD Comprehensive Teacher's Rating Scale, Second Edition: Rina K.
Ullman, Esther K. Sleator, Robert L. Sprague, and MetriTech staff;
MetriTech, Inc.

Adolescent Psychopathology Scale: William M. Reynolds, Psychological
Assessment Resources, Inc.

Alcohol Use Disorders Identification Test: Thomas F. Babor, Juan Ramon
de la Fuente, John Saunders, and Marcus Grant, World Health
Organization.

Assessment of Adaptive Areas: Brian R. Bryant, Ronald. L. Taylor, and
Diane Pedrotty Rivera, PRO-ED.

Assessment of Parenting Skills: Infant and Preschooler: Gail Elliot,
Village Publishing.

Attention Deficit/Hyperactivity Disorder Test: James E. Gilliam, PRO-ED.

Beck Depression Index: Aaron T. Beck, Robert A. Steer, and Gregory K.
Brown, The Psychological Corporation.

Behavior Checklist and Revised Child Behavior Profile. [^350]

Brief Neuropsychological Cognitive Examination: Jospeh Tonkonogy,
Western Psychological Services.

The CAGE (Alcohol Use): Ewing, DrugNET[^351] http://www. drugnet.
bizland. com/assessment/cage. htm

Caregiver-Teacher Report Form: Thomas M. Achenbach, child Behavior
Checklist.

Child Sexual Behavior Inventory: William N. Friedrich, Psychological
Assessment Resources, Inc.

Cognitive Symptom Checklist: Christine O'Hara, Minnie Harrell, Eileen
Bellingrath, and Katherine Lisicia, Psychological Assessment Resources,
Inc.

Conners' Rating Scales-Revised: C. Keith Conners, Multi-Health Systems,
Inc.

Davidson Trauma Scale: Jonathan Davidson, Multi-Health Systems, Inc.

Developmental Assessment of Young Children: Judith K. Voress and Taddy
Maddox, PRO-ED.

Family Assessment Form: A Practice-based Approach to Assessing Family
Functioning: Children's Bureau of Southern California, Child Welfare
League of American, Inc.

Hare Psychopathy Checklist: Screening Version: S. D. Hart, D. N. Cox,
and R. D. Hare, Multi-Health Systems, Inc.

Human Figure Drawing Test: Jerry Mitchell, Richard Trent, and Roland
McArthur, Western Psychological Services.

Independent Living Scales: Patricia Anderten Loeb, The Psychological
Corporation.

Infant Development Inventory: Harold Ireton, Behavior Science Systems.

Learning Disabilities Diagnostic Inventory: Donald D. Hammill and Brian
R. Bryant, PRO-ED.

Learning Styles Inventory {Educational Activities, Inc. }; Jerry F.
Brown and Richard M. Cooper, Educational Activities, Inc.

Leiter International Performance Scale: Gale. H. Roid and Lucy J.
Miller, Stoelting Co.

Michigan Alcoholism Screening Test: Melvin L. Selzer, Melvin L. Selzer.

Minnesota Multiphasic Personality Inventory-2: James N. Butcher, PhD; W.
Grant Dahlstrom, PhD; John R. Graham, PhD; Auke Tellegen, PhD; and
Beverly Kaemmer, NCS.

Movement Assessment Battery for Children: Sheila E. Henderson and David
A. Sugden, The Psychological Corporation.

Neonatal Behavioral Assessment Scales, 3^rd^ Edition: T. Berry Brazelton
and J. Kevin Nugent, Cambridge University Press.

Peabody Individual Achievement Test: Frederick C. Markwardt, Jr. ,
American Guidance Service, Inc.

Peabody Picture Vocabulary Test-III: Lloyd M. Dunn, Leota M. Dunn,
Kathleen T. Williams, and Jing-Jen Wang, American Guidance Services,
Inc.

Posttraumatic Stress Diagnostic Scale: Edna B. Foa, NCS.

Quick Neurological Screening Test, 2^nd^ Revised Edition; Margaret C.
Mutti, Harold M. Sterling, Nancy A. Martin, and Norma V. Spalding,
Academic Therapy Publications.

The Renfrew Bus Story: Judy Cowley and Cheryl Glasgow, Centreville
School.

Rey Complex Figure Test and Recognition Trial: John E. Meyers and Kelly
R. Meyers, Psychological Assessment Resources, Inc.

Scales of Independent Behavior-Revised: Robert H. Bruininks, Richard W.
Woodcock, Richard F. Weatherman, and Bradley K. Hill, The Riverside
Publishing Company.

Sentence Completion Series: Larry H. Brown and Michael A. Unger,
Psychological Assessment Resources, Inc.

Structured Clinical Interview for DSM-IV Axis I Disorders: Clinician
Version: Michael B. First, Robert L. Spitzer, Miriam Gibbon, and Janet
B. W. Williams, American Psychiatric Press, Inc.

Test of Early Language Development, Third Edition: Wayne P. Hresko, D.
Kim Reid, and Donald D. Hammill, PRO-ED.

Test of Nonverbal Intelligence: Linda Brown, Rita J. Sherbenou, and
Susan K. Johnson, PRO-ED.

Vineland Adaptive Behavior Scales: Sara S. Sparrow, David A. Balls, and
Domenic V. Cicchetti, American Guidance Services, Inc.

Wechsler Adult Intelligence Scale-III: David Wechsler, The Psychological
Corporation.

Wechsler Intelligence Scale for Children-III: David Wechsler, The
Psychological Corporation.

Wechsler Memory Scale-III: David Wechsler, The Psychological
Corporation.

Wide Range Achievement Test-III: Gary S. Wilkinson, Wide Range, Inc.

Wisconsin Card Sorting Test, Revised and Expanded: Robert K. Heaton,
Gordon J. Chelune, Jack L. Talley, Gary G. Kay, and Glenn Curtiss,
Psychological Assessment Resources, Inc.

Woodcock Diagnostic Reading Battery: Richard W. Woodcock, The Riverside
Publishing Company.

**Appendix 5:**

**Commonly Used Medications**[^352],[^353]

The following are medications that are commonly used to treat the mental
health and behavioral disorders previously described. They may or may
not be effective in children, adolescents, and adults with FASD and few
studies have evaluated medication interventions with this population.
There are three published medication studies with FASD. Two showed that
stimulants were effective in controlling hyperactivity, but not
impulsivity/attention problems. One study showed that stimulants had
some effect but anticonvulsant mood stabilizers and neuroleptics were
better. Medications should be prescribed by a professional licensed to
do so, hopefully one with some experience with working with children,
adolescents, and adults with FASD. One of the preeminent experts in the
use of medications with patients with FASD is Dr. Kieran O'Malley,
associated with the Fetal Alcohol and Drug Unit of the University of
Washington. Dr. O'Malley often cautions that "None of these medications
should be considered a panacea for the behavioral problems associated
with FASD. "[^354],[^355]

Adapin, Sinequan (doxepin) antidepressant

Adderall (formerly Obetrol Now available as generic "amphetamine salts")

Anafranil (clomipramine) antidepressant, for OCD

Benzodiazepines for anxiety

Buspar (buspirone) for anxiety

Carbamazepine for episodic outbursts and aggression

Catapres (clonidine) for anxiety, hypertension

Celexa (citalopram hydrobromide) for depression

Compazine (prochlorperazine) anti-psychotic, anti-nausea

Concerta (time released Ritalin) for ADHD

Cylert (pemoline) for ADHD (may cause serious liver problems)

Dalmane (flurazepam) for sleep disturbances, anxiety

Depakote (Divalproex, Valproic Acid) anticonvulsant, ODD, aggression

Desyrel (trazodone) antidepressant (frequently prescribed for sleep
disturbances)

Desoxyn (methamphetamine) stimulant for ADHD, narcolepsy

Dexedrine (dextroamphetamine) psychostimulant for ADHD

Effexor (venlafaxine) antidepressant

Elavil (amitriptyline) antidepressant

Eqanil, Miltown (Meprobamate) for anxiety

Haldol (haloperidol) for explosiveness

Klonopin (clonazepan) for anxiety

Lamictal (lamotrigine) anticonvulsant, mood stabilizer

Librium (chlordiazepoxide) for anxiety

Lithane Lithotabs (lithium) antipsychotic, bipolar

Luvox (Floxyfral, fluvoxamine) for OCD

Mellaril (thioridozine) for hyperkinesis, antipsychotic

Molindone (Lidone, Moban) anti psychotic

Neurontin (gabapentin) anti-convulsant, anxiety

Norpramin (desipramine) antidepressant

Paxil (paroxetine) antidepressant

Phenergan (promethazine)

Prozac (fluoxetine) antidepressant

Provigil (modafinil) for ADHD, narcolepsy, sleep apnea

Remeron (mirtazapine) antidepressant

ReVia (naltrexone) skin picking (Primarily prescribed for alcohol
cravings, is an alcohol abuse inhibitor)

Risperdal (risperidone) antipsychotic, mood stabilizer

Ritalin (methylphenidate) for ADHD

Seroquel (quetiapine fumarate) antipsychotic (may increase appetite)

Serzone (Nefazodone) antidepressant, also for seizures

Stelazine (trifluoperazine) antidepressant

Tegretol (carbamazepine) mood stabilizer, anti-seizure

Thorazine (chlorpromazine) antipsychotic

Tofranil (imipramine) antidepressant, used for enuresis

Tomoxetine for ADHD (non stimulant)

Valium (diazepam) for epilepsy, anxiety

Wellbutrin (bupropion) antidepressant

Xanax (alprazolam) for anxiety disorders and aggression

Zoloft (sertraline) antidepressant

Zyprexa (olanzapine) antispychotic

**Appendix 6:**

**An Example of an IEP**

**Individual Education Program (IEP) Services Description**

Student\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_IEP
Date\_\_\_\_\_\_\_\_\_\_\_\_\_
DOB\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

IEP Responsible Educator
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_Home
School\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_ Attending
School\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

If student will not attend home school, list
rationale\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**Educational Program and Related Services** Projected/Anticipated
Minutes Per Week

Starting Date Duration

**Level of Special Education Services**: List/Description of Specific
Areas of Service (Please Check Only One)

1\. Regular Program w/Itinerant Service

2\. Special Education Resource Service

3\. Self-contained Special Education Service

4\. Specialized Self-Contained Service

5\. Out-of-Cooperative Program

**Career/Vocational Education (14 years or older)**

1**.** Regular Program Course/Placement
Name:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

2\. Special Program / Describe:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
Service Provider:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

3\. No Vocational Education\_\_\_ Parent Preference\_\_\_\_\_
Other\_\_\_\_\_\_\_\_

**Related Services**

Service
Provider:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
CDS\_\_\_\_\_\_\_\_\_

Service
Provider:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
OT\_\_\_\_\_\_\_\_\_\_

Service
Provider:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
PT\_\_\_\_\_\_\_\_\_\_

Service
Provider:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
Other\_\_\_\_\_\_\_\_

Special Transportation Required: Yes\_\_\_\_\_\_ No\_\_\_\_\_\_\_\_

**Evaluation for Service Recommendation**:\_\_\_\_\_\_\_\_\_ Total
Minutes of Special Education \_\_\_\_\_\_

(Attach Referral) Total Minutes of Regular Education \_\_\_\_\_\_

Total Minutes Per Week \_\_\_\_\_\_

**Extent of Participation in Regular
Education:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_**

\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**Physical Education Program:** Regular\_\_\_\_\_ Special
Ed:\_\_\_\_\_\_ PE requirement complete\_\_\_\_

**Less Restrictive Placement Rejected for Following Reasons:**

Academic
Level\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Behavioral
Concerns\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Unique
Needs\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Failure to Succeed in Less Restrictive
Setting:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Opportunities for Nonacademic and Extracurricular
Activities:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**Extended School Year (ESY) Status:** Each school year all students
with handicapped conditions are considered for extended school year
service.

Your
Student\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

\_\_\_\_ is recommended for ESY

\_\_\_\_ is not recommended for ESY

\_\_\_\_ will be considered for ESY services by May\_\_\_\_\_\_.

**INDIVIDUALIZED EDUCATION PROGRAM**

**NOTICE OF INDIVIDUALIZED EDUCATION PROGRAM MEETING**

**Student\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
DOB:\_\_\_\_\_\_\_\_\_\_\_\_ Date:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_**

Dear Parent:

Your student is eligible for special education services. We need to
develop an Individualized Education Program (IEP). This letter is to
confirm a meeting date to develop the IEP.

The purpose of the IEP is to review your student's present school
performance, decide upon annual goals, and discuss specific services and
placement options. It is important that you come to the IEP meeting. We
need your help in planning your student's program. We welcome your ideas
about goals and objectives for your student's program.

If you have questions regarding your student's involvement in the
program at his/her school, please feel free to contact me.

The IEP conference has been scheduled for:
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_.

Date:\_\_\_\_\_\_\_\_ Time:\_\_\_\_\_\_\_\_\_\_\_
Location:\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

**People Invited to the IEP: Position:**

**\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_**

**\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_**

**\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_
\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_**

If for some reason, you are unable to attend, please call or write so
that we can reschedule at a more convenient time. Thank you.

Sincerely,

\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Principal or designee

\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_\_

Phone

**Appendix 7:**

**Resource Guide**

There are, literally, thousands of web sites now devoted to Fetal
Alcohol Syndrome and related effects as well as Native American mental
and physical health concerns. The selection below is a sample of sites
from around the United States and Canada. It also contains a variety of
resources from online, family support resources, videos, and other
media.

[Selected Web sites:]{.underline}

Better Endings New Beginnings -- Help for families and professionals
dealing with high-risk youth, foster care, adoptions, kinship care,
FASD, LD

[http://www.betterendings.org/]{.underline}

Canadian Centre on Substance Abuse - Fetal Alcohol Syndrome-

National FAS center offers news, resources, prevention activities and a
listserv.

[http://www. ccsa. ca/fasgen. htm]{.underline}

Centers for Disease Control and Prevention-National Center on Birth
Defects and Developmental Disabilities: Fetal Alcohol Syndrome

1600 Clifton Rd.

Atlanta, GA 30333

[http://www.cdc.gov/ncbddd/fas/default/htm]{.underline}

Children\'s Center

 415 S W 11th Street                         

or PO Box 484                

Vancouver, WA  98666

Phone: (360) 699-2244     Fax   (360) 699-1900

Antonia Rathbun, M. A. , A. T. R. , NCMHC

Special Needs Adoption Support Program Manager     

E-Mail: [antoniar@thechildrenscenter.org]{.underline}

The Clearinghouse for Drug Exposed Children

Newsletter Division of Behavioral and Developmental Pediatrics

University of California, San Francisco

1350 7^th^ Avenue, Room 101

San Francisco, CA 94143-1311

Phone: (415) 476-9691

CSAP National Clearinghouse for Alcohol and Drug Abuse Information

Phone: (800) 729-6686

Epigee Birth Control Guide

A Simple Guide to Birth Control

[http://www.epgee.org]{.underline}

Family Empowerment Network: Support, Resource and Referral Network

University of Wisconsin Medical School

Department of Family Medicine

777 S. Mills Street

Madison, WI 53715

Contact: Georgiana Wilton

Phone: (800) 462-5254

E-mail: [fen@fammed.wisc.edu]{.underline}

[http://www. fammed. wisc. edu/fen]{.underline}

Family Support Services:

The Arc of the United States

500 East Border Street, Suite 300

Arlington, TX 76010

Phone: (817) 261-6003

[http://www.thearc.org]{.underline}

FANN -- Fetal Alcohol Network Newsletter

158 Rosemont Avenue

Coatesville, PA 19320

Listing of National Support Groups

Phone: (610) 384-1133

FAS/ATOD Wed Resources -- The Fetal Alcohol Syndrome/Alcohol Tobacco and
Other Drug (FAS/ATOD) Prevention Outreach Project (POP) is a
collaborative effort involving numerous community sectors and health,
education, social service, law enforcement, and community groups.

[http://www.uchsc.edu/ahec/fas/websites/]{.underline}

FASLINK -- Internet connections for education and support for families
of children with FAS.

[http://treefort.org/\~tjk/faslink.htm]{.underline}

[http://www.come-over.to/FAS/faslink.htm]{.underline}

[http://laran.waisman.wisc.edu/fv/www/lists/FAS-LINK.htm]{.underline}

#### FAS Community Resource Center-Provides a fetal alcohol syndrome fact sheet, email support groups, and research articles. Find legislation updates, links and personal stories. 

[http://www.azstarnet.com/\~tjk/fashome.htm]{.underline}

The FAS Family Resource Institute (FAS-FRI)

P. O. Box 2525

Lynnwood, WA 98036

Phone: (206) 778-4048

[http://www.accessome.com/\~delindam/]{.underline}

E-Mail: [delindam@accessone.com]{.underline}

FASD Newsletter

c/o Mailbag

P. O. Box 74612

Fairbanks, AK 99707

Support Group

Contact: Gail Hales

Phone: (907) 456-2866

Federation of Aboriginal Foster Parents

2680 East Hastings Street, #300

Vancouver, BC V5K 2A9

Phone: (604) 291-7091

Fax: (604) 291-7098

E-Mail: [mailto:fafp@direct.ca]{.underline}

Fetal Alcohol Task Force

1016 East First Street

Port Angeles, WA 98362

Growing With FASD Newsletter

7802 SE Taylor

Portland, OR 97215

Phone: (503) 254-8129

Hazelden Hotline. A service of the Hazelden Treatment Program, helps
people to overcome fears about talking to friends and relatives with
addiction problems.

Phone: 1-800-I-DO-CARE

Iceberg Newsletter

P. O. Box 95597

Seattle, WA 98145-2597

INFORPACKAGE -- Alcohol-Related Birth Defects -- A Division of the
Centre for Addictions and Mental Health Alcohol-Related Birth Defects
Information Package Copyright, ARF Library, 1996.

[http://www.arf.org/isd/infopak/arbd.html]{.underline}

##### IRSC - Cognitive Disabilities, Fetal Alcohol Syndrome

The Internet Resources for Special Children (IRSC) - Global disability
resource is dedicated to communicating information relating to the needs
of children with disabilities on a global basis.

[http://www. irsc. org/fas. htm]{.underline}

[Journey Through the Healing Circle]{.underline}

Washington State Department of Social and Health Services (DSHS),
\"Journey Through the Healing Circle\" is now available to parents,
schools, and other social service agencies as a series of videotapes,
video CDs, and professionally illustrated workbooks.

A partnership of Washington State agencies, health-care experts, and
traditional Northwest tribal storytellers has produced a collection of
stories, health tips, and practical knowledge to help parents and foster
parents learn about Fetal Alcohol Syndrome and understand how it affects
their children- press release, DSHS, 2001

[http://www.dshs.wa.gov/fosterparents/journey.html]{.underline}

Michigan Health and Hospitals Fetal Alcohol Syndrome (FAS) / Fetal
Alcohol Effects (FASD) / Alcohol Related Birth Defects (ARBD)

[http://mel.lib.mi.us/health/health-fas.html]{.underline}

Ministry for Children and Families Library Resource Centre FASD
Introduction to Subject Guides \| Library Home Page Additions Adoption
Child Abuse & Neglect Child Welfare Children Disabilities Directories
Education & Training Electronic Journals.

[http://www.ssrv.gov.bc.ca/library/subjects/sub011b.html]{.underline}

State of Missouri-Fact sheet from the Missouri Department of Mental
Health defines this condition and explains how to prevent it.

[http://www.well.com/user/woa/fsfas.htm]{.underline}

MOFAS-Minnesota Organization for Fetal Alcohol Syndrome -- This is a web
site put out to aid parents, caregivers and professionals in obtaining
information about and services for individuals and families affected by
FAS.

[http://www.mofas.org/resources/listserve.htm]{.underline}

NOFAS: National Organization on Fetal Alcohol Syndrome.

[http://www.nofas.org]{.underline}

Office of Minority Health Resource Center. Conducts customized database
searches, accessing information on health programs and organizations as
well as funding sources and articles. A printout will be mailed to you
at no charge.

Phone: (800) 444-6472

Office of Special Education Programs

US Department of Education

Positive Behavioral Interventions and Support Technical Assistance
Center

Behavioral Research and Training

5262 University of Oregon

Eugene, OR 97403-5262

pbis@oregon. uoregon. edu

Phone: (541) 346-2505

Fax: (541)346-5689

[http://www.pbis.org]{.underline}

Planned Parenthood Federation of America

810 Seventh Avenue

New York, NY 10019

[http://www.plannedparenthood.org]{.underline}

Pregnancy Resource Guide: Internet Access Sites -- The National
Clearinghouse for Alcohol and Drug Information. A service of SAMHSA
Pregnant/Postpartum Women and Their Infants: Internet Access Sites
September 1997. Federal Resources Administration for Children and
Families.

[http://www.acf.dhhs.gov]{.underline}

[http://www.health.org/pubs/resguide/pregnant/links.htm]{.underline}

Rehabilitation research and Training Center on Positive Behavioral
Support

Division of Applied Research and Educational Support

Division of Child and Family Studies

University of South Florida

Tampa, FL

Phone: 813-974-4612

[http://rrtcpbs. fmhi. usf. edu]{.underline}

Saskatchewan Fetal Alcohol Support Network, Inc.

210-2002 Quebec Avenue

Saskatoon, Saskatchewan S7K 1W4

Phone: (306) 665-7272

Fax: (306) 665-7274 (Fax)

E-Mail: [fas.network@sk.sympatico.ca]{.underline}

Shodair Children's Hospital

2755 Colonial Drive.

Helena, MT 59601

Phone: 406-444-7500

[http://shodairhospital.org]{.underline}

Society of Indian Dentists

PO Box 15107

Phoenix, AZ 85060

Phone: 602-954-5160 (Voice)

Spectrum/Fetal Alcohol Syndrome -- FETAL ALCOHOL SYNDROME (FAS) and
FETAL ALCOHOL EFFECTS (FASD)

[http://comnet.org/local/orgs/spectrum/fas.html]{.underline}

Specialized Training Services

Drew Leavens, President

9606 Tierra Grande, Suite #105

San Diego, CA 92129

Phone: (858) 695-1313

Fax: (858) 695-6599

[http://www. specializedtraining. com]{.underline}

State of Alaska FAS Coordinator

DHSS

P. O. Box 110607

Juneau, AK 99811-0607

Contact: L. Diane Casto

Phone: 1-800-478-2097

[http://www.hss.states.ak.us/fas/]{.underline}

SUPER Group

Fairbanks, Alaska

Contact: Jennifer Smith

Phone: (907) 452-1776

Support Group for Adoptive and Foster Parents

Paramus, NJ

Contact: Ronnie Jacobs

Phone: (201) 261-1450

Tanana Chiefs Conference

122 First Avenue, Suite. 600

Fairbanks, AK 99701-5903

Phone: (907) 452-8251

[http://www.tananachiefs.org]{.underline}

Texas Fetal Alcohol Syndrome Consortium Home Page

Texas Fetal Alcohol Syndrome Consortium is sponsored by the Texas Office
for the Prevention of Developmental Disabilities (TOPDD) in
collaboration with The Arc of Texas, and the Texas Department of Mental
Health and Mental Retardation.

[http://www.main.org/texasfasc]{.underline}

###### TRIUMF Project - Fetal Alcohol Syndrome

Comprehensive resource center offers a mailing list, software to
download, and an archive of articles and links.

[http://www.acbr.com/fas]{.underline}

**[Diagnostic Resources:]{.underline}**

FAS-- Diagnostic and Prevention Network

University of Washington

Susan Astley, PhD. , Director

Phone: (206) 526-2206

FAS Diagnostic and Prevention Network  

####### Pacific Treatment Alternatives

1114 Pacific Avenue        

Everett, WA  98201     

Phone: (425) 259-7142

Fax: (425)258-4782

Karen Canida, Pregnancy Outreach Director

FAS Diagnostic and Prevention Network

####### Wilson Psychological Services

1240 SE Bishop Boulevard, Suite Q

Pullman, WA  99163                  

Phone: (509) 334-0782

Fax: (509) 334-0361

Greg Wilson, PhD.

FAS Diagnostic and Prevention Network -

Spokane Regional Health District -- 

Substance Misuse Clinic  

1101 West College Avenue     

Spokane, WA  99201-2095  

Phone: (509) 324-1413   or (509) 324-1457   

Fax: (509) 324-3622

Nancy Echelbarger, Clinic Coordinator    

E-Mail: [echelbarger@spokanecounty.org]{.underline}

"The Clinical Diagnosis of Fetal Alcohol Syndrome". A video by Jon M.
Aase, M. D. shows complete and never-before-seen information on the
clinical diagnosis of FAS. The video can be purchased for the price of
\$150. 00 + \$9. 00 for S/H:

Flora & Company

P. O. Box 8263

Albuquerque, NM 87198-8263

Phone: (505) 255-9988

**[Media Resources]{.underline}**:

"Alcohol, Pregnancy, and the Fetal Alcohol Syndrome": This Slide Lecture
Unit from Project Cork of the Dartmouth Medical School contains 79 full
color slides with accompanying text covering the effects of maternal
drinking on fetal development. The slide unit is available from:

Milner-Fenwick, Inc.

2125 Greenspring Drive

Timonium, MD 21093

To order, call Phone: (800) 432-8433 or Fax (410) 252-6316

"And down will come baby". A 17-minute video for teenagers that examines
the specific health risks to the unborn child exposed to cocaine,
heroin, alcohol, and tobacco. For ordering information, write to:

Scott Newman Center

6255 Sunset Blvd, Suite 1906

Los Angeles, CA 90028

Phone: (800) 783-6396

"The Early Years, Birth through Age 12" and "Independence, Ages 12 to
Adult". Training Tapes for Living with FAS and FASD seek to assist those
living with FASD and their families through a variety of challenges,
from soothing a fussy baby to adaptive living skills. Each tape is 32
minutes long and costs \$295:

Altschul Group Corporation

1560 Sherman Avenue, Suite 100

Evanston, IL 60201-9971

"Women of Substance" A new one-hour documentary on the barriers pregnant
and child-caring women addicts encounter in their struggle toward
sobriety. Call Video Action Fund for ordering information:

Phone: (202) 338-1094

**[Additional Resources:]{.underline}**

**Indian Health Service**

Indian Health Service:

Area Office Addresses:

[(http://www. ihs. gov)]{.underline}

Ask for Behavioral Health:

Aberdeen Area Office

Office of Professional Services

115 4th Avenue Southeast

Aberdeen, SD 57401

Phone: (605) 226-7531

Fax: (605) 226-7321

Alaska Area Native Health Service

4141 Ambassador Drive

Anchorage, AK 99508-5928

Phone:(907) 729 - 3686

Fax: (907) 729 - 3689

Albuquerque Area Office

5300 Homestead Road, NE

Albuquerque, NM 87110

Phone: (505) 248-4102

Fax: (505) 248-4115

Bemidji Area Indian Health Service

522 Minnesota Avenue. NW, Room 119

Bemidji, MN 56601

Phone: (218) 759-3412

Fax: (218) 759-3511

Billings Area Office

2900 4th Avenue North

Billings, MT 59101

Phone: (406) 247-7107

Fax: 406-247-7230

California Area Indian Health Service

1825 Bell Street, Suite 200

Sacramento, CA 95825-1097

Operator Assisted Calls Phone: (916) 566-7001

Automated Calls Phone: (916) 566-7033

Fax: (916) 566-7043

E-Mail: [Webmaster: Webmaster@cao. ihs. gov]{.underline}

Unlike most other Areas of Indian Health Service, the California Area is
a total P. L. 93-638 Indian Self-Determination Act contract Area where
the tribes maintain full responsibility for the development and
operation of their own primary health care facilities, programs, and
services.

Nashville Area Indian Health Service

711 Stewarts Ferry Pike

Nashville, TN 37214-2634

Phone: (615)736-2400

Fax: (615)736-2391

Navajo Area Indian Health Service

P. O. Box 9020

Window Rock, AZ 86515-9020

Phone: (520) 871-5811

Fax: (520) 871-5896

Oklahoma City Area Indian Health Service

Five Corporate Plaza

3625 NW 56th Street

Oklahoma City, OK  73112

Phone: (405) 951-3768       

Fax: (405) 951-3780

Phoenix Area Indian Health Service

Two Renaissance Square

40 North Central Avenue

Phoenix, AZ 85004

Phone: (602) 364-5039

Fax: (602) 364-5042

Portland Area Indian Health Service

1220 SW Third Avenue - Room 476

Portland, OR 97204-2892

Phone: (503) 326-2020

Fax: (503) 326-7280

Tucson Area Indian Health Service

7900 S. J. Stock Road

Tucson, AZ 85746-7012

Phone: (520) 295-2405

Fax: (520) 295-2602

**Selected Professional Organizations:**

American Academy of Pediatrics

National Headquarters:

The American Academy of Pediatrics

141 Northwest Point Boulevard

Elk Grove Village, IL 60007-1098

Phone: (847) 434-4000

Fax: (847) 434-8000

American Academy of Pediatrics

Washington, DC Office:

Department of Federal Affairs

601 13th Street NW

Suite 400 North

Washington, DC 20005

Phone: (202) 347-8600

Fax: (202) 393-6137 (Fax)

[http://www.aap.org]{.underline}

American Medical Association

515 North State Street

Chicago, IL 60610

Phone: (312) 464-5000

[http://www.ama-assn.org]{.underline}

American Occupational Therapists Association

4720 Montgomery Lane

P. O. Box 31220

Bethesda, MD 20824-1220

Phone: (301)652-2682 or TDD 1 (800) 377-8555.

[http://www.aota.org/general/about.asp]{.underline}

American Psychological Association

750 First Street, NE,

Washington, DC 20002-4242.

Phone: (800) 374-2721; (202) 336-5510. TDD/TTY: (202) 336-6123

[http://www.apa.org]{.underline}

American Psychiatric Association

######## 1400 K Street NW 

######## Washington, DC 20005 

Phone: (888) 357-7924

Fax (202) 682-6850

[http://apa@psych. org]{.underline}

American Psychiatric Nurses Association

Colonial Place Three

2107 Wilson Blvd. , Suite 300 A

Arlington, VA 22201

Phone: (703) 243-2443

Fax: (703) 243-3390

[http://www.apna.org]{.underline}

Association of American Indian Physicians

2423 Camino Del Rio South, Suite 103

San Diego, CA, 92108.

(619)683-2012

E-mail: [aaip-ca@msn. com](mailto:aaip-ca@msn.com).

[http://www.aaip]{.underline}

Association for the Treatment of Sex Abusers

4900 SW. Griffith Drive, Suite 274

Beaverton, OR. 97005

Phone: (503) 643-1023

Fax: (503) 643-5084

E-mail: [atsa@atsa. com](mailto:atsa@atsa.com)

[http://www. atsa. com]{.underline}

National Association of Social Workers

750 First Street NE, Suite 700

Washington, DC 20002-4241

Phone: (202) 408-8600 or (800) 638-8799

[http://www.naswdc.org]{.underline}

Society of Indian Psychologists

John Chaney, President

Oklahoma State University

215 North Murray Hall

Stillwater, OK 74078

Phone: (405) 744-6027

E-Mail: [jchaney@okstate. edu]{.underline}

National Organization on FAS (NOFAS)

[http://www. nofas. org]{.underline}

**Appendix 8:**

**Glossary of Terms**

Abstract Concepts Thought or ideas expressed, a quality apart from an
object

Advocate One who argues or pleads another's cause

Articulate Able to speak, express oneself readily and effectively

Benign Of a gentle disposition, kind, good-hearted

Broach To introduce a topic of conversation

Burnout Exhaustion of one's physical or emotional strength

Clinadactyly A common recessive birth defect resulting in a bend at the
first joint of the fifth digit

Competency To demonstrate ability, fitness, capability

Cognitive Development Growth in conscious mental activity as thinking,
remembering or learning

Colicky Sharp, sudden abdominal pain

Concrete Naming a real thing or class of things, actual or seen rather
than implied

Croon To sing or hum in a gentle murmuring voice

Culturation Developing by education and training

Detention A period off temporary custody prior to disposition by a court

Detoxified To free an alcoholic from an intoxicating substance or from
dependence on it

Developmental Milestones Significant points in developmental growth

Discriminate To distinguish, differentiate

Dysmorphologist A physician trained to identify and diagnosis physical
and genetic syndromes

Egocentric Concerned or overly concerned with the self

Encephalitis Inflammation of the brain

Eradicate To uproot, eliminate

Exacerbate To make more bitter or severe

Frontal Lobes Front part of the brain that controls behavior, the
understanding of cause and effect, abstracting abilities, and the
integration of information from other areas of the brain

Generalization A general statement, law, principle or proposition

Gravitate To move or tend to move toward something

Habituation The process of making habitual

Ideation The capacity for or process of forming ideas

Impulsiveness To act or prone to act on impulse, a natural tendency ,
without thinking

Incarcerate Imprison, confine

Interdependence Dependent upon one another

Intervention To come in or between in order to stop, settle or modify,
treatment

Intrusive To enter or force in or upon, encroach

Jargon Vocabulary used exclusively in a specific profession

Latency Period Present by not visible or active, dormant, refers to the
period before puberty

Manifestations Displays, demonstrations

Monogamous Marriage with but one person at a time

Orthodontic Branch of dentistry dealing with faulty tooth occlusion and
its correction

Otitis Media Inner ear infection

Perseveration Fixation on and repetition of thoughts, words, and
movements, commonly associated with brain damage or certain psychiatric
disorders

Precursor One that precedes and indicates the approach of another

Predisposition To incline in advance, making susceptible

Provocation The act of provoking, to incite to anger

Psychiatrist A professional in the branch of medicine dealing with
mental disorders

Psychologist A professional that deals with the science of the mind and
behavior

Psychosocial Dealing with the psychological and social environment and
influences

Psychotherapy Treatment of mental or emotional disorder

Respite Care An interval of rest or relief for the caretaker

Sanctions Authoritative approval designed to enforce a law or standard

Self-Regulate To govern or direct oneself according to rule

Sequential Chronological order, progression

Sobriety The state of being sober or not drunk; not abusing alcohol or
drugs

Socialization To participate actively in a social gathering

Syntactic The way in which words are put together to form phrases or
sentences

Tactile Relating to or perceptible through the sense of touch

Teratogen A substance that can cause birth defects when used by pregnant
women

Temper Tantrums Fits of bad temper or sudden outbursts

Trauma A bodily or mental injury caused by an external agent

Truancy One who stays out of school without permission

Ventricular Septal Defect A congenital defect of the heart where there
is a hole in the heart. This may resolve on its own although it may also
require cardiac surgery.

Vulnerability Capable of being taken advantage of, open to attack

[^1]: LaDue, R. A. [A Practical Native American Guide for Caregivers of
    Children, Adolescents, and Adults with Fetal Alcohol Syndrome and
    Fetal Alcohol Related Conditions.]{.underline} Rockville, MD: Indian
    Health Service, 2000.

[^2]: Vogel, V. J. [American Indian Medicine (Civilization of the
    American Series)]{.underline}. Vol. 95, Norman, OK: U. of Oklahoma
    Press. 1990.

[^3]: Mihesuah, D. A. [American Indians: Stereotypes &
    Realities]{.underline}. Atlanta, GA: Clarity Press, 1997.

[^4]: DeLoria, V. ; Wilkins, D. E. [Tribes, Treaties, and Constitutional
    Tribulations.]{.underline} Austin, TX: University of Texas Press,
    2000.

[^5]: DeLoria, V. [American Indians; American Justice.]{.underline}
    Austin, TX: University of Texas Press, 1983.

[^6]: Bataille, G. M. and Sands, K. M. [American Indian Women: Telling
    Their Lives]{.underline}. Lincoln, NE: U. of Nebraska, 1987.

[^7]: May, P. A. "The Epidemiololgy of Alcohol Abuse Among American
    Indians: The Mythical and Real Properties. " [American Indian
    Culture and Research Journal.]{.underline} 18: (2), 1996, pp.
    121-143.

[^8]: Miller, J. [American Indian Families]{.underline} (True Book)
    Danbury, CN: Children's Press, 1997.

[^9]: Arbogast, D. (Ed. ) [Wounded Warriors: A Time for
    Healing]{.underline} Omaha, NE: Little Turtle Publications, 1995.

[^10]: LaDue, R. A. "Coyote Returns: Twenty Sweats Does Not an Indian
    Make. " [Women in Therapy]{.underline}. 15 (1994) 93-111.

[^11]: Hutchison, S. H. "A Minority Under the Microscope: The American
    Indian Reaction."

[^12]: Bataille, G. M. and Sands, K. M. [American Indian Women: Telling
    Their Lives]{.underline}. Lincoln, NE: U. of Nebraska, 1987.

[^13]: Carmichael-Olson, H. "The Effects of Prenatal Alcohol Exposure on
    Child Development. " [Infants and Young Children]{.underline}. 6(3)
    1997, 10-25.

[^14]: Carmichael-Olson, H. , Sampson, P. D. , Barr, H. M. ,
    Streissguth, A. P. , and Bookstein, F. L. [Neuropsychological
    Deficits in Adolescents with Fetal Alcohol Syndrome]{.underline}.
    (Tech. Rep. No. 96-17). Seattle, WA: U. of Washington, 1996.

[^15]: Institute of Medicine [Fetal Alcohol Syndrome: Diagnosis,
    Epidemiology, Prevention and Treatment.]{.underline} Washington, D.
    C. : National Academy Press, 1996.

[^16]: Clarren, S. K. and Smith, D. W. "The Fetal Alcohol Syndrome. "
    [New England Journal of Medicine]{.underline} 298 (1978) 1063-1067

[^17]: Astley, S. J. and Clarren, S. K. "A Fetal Alcohol Syndrome
    Screening Tool. " [Alcohol. Clin, Exp. Res.]{.underline} 19 (1995)
    1565-1571.

[^18]: Thank you to Alan Willoughby for his contribution.

[^19]: Streissguth, A. P. , "A Long-Term Perspective on FAS. " [Alcohol
    Health & Research World]{.underline}. 18 (1) 1994, 74-81.

[^20]: Clarren, S. K. Teachings From The FAS-DPN Clinic. 1997-2001.

[^21]: Stevens, S. J. and Wexler, H. K. , eds. [Women and Substance
    Abuse: Gender Transparency]{.underline}. New York: Haworth Press,
    1998.

[^22]: Masis, K. Personal communication, 2002.

[^23]: Little, R. E. , and Streissguth, A. P. [Alcohol Use and Its
    Consequences: Fetal Alcohol Syndrome.]{.underline} Hanover, NH:
    Dartmouth Medical School Project Cork, 1988.

[^24]: Streissguth, A. P. , Aase, J. M. , Clarren, S. K. , Randels, S.
    P. , LaDue, R. A. and Smith, D. F. "Fetal Alcohol Syndrome in
    Adolescents and Adults. " [Journal of the American Medical
    Association]{.underline}. 265 (1991) 1961-1967.

[^25]: Wilsnack, R. W. , Wilsnack, S. C. [Gender and Alcohol: Individual
    and Social Perspectives.]{.underline} New Brunswick, NJ: Rutgers
    Center of Alcohol Studies, 1997.

[^26]: Comfort, ML & Kaltenbach, K. "The Psychosocial History: An
    interview for pregnant and parenting women in substance abuse
    treatment and research. " In E. R. Rahdert (Ed) [Treatment for
    Drug-Exposed Women and Their Children: Advances in Research
    Methodology, NIDA Research Monograph 165]{.underline}*.* Rockville
    MD: US Department of Health and Human Services, 1996, pp. 123-142.

[^27]: Little, R. E. , Streissguth, A. P. "Reducing Fetal Alcohol
    Effects: The Seattle Pregnancy and Health Program. " Majewski, F.
    (Ed. ) [Die Alkohol-Embryopathie]{.underline}. Frankfurt/Main:
    Umwelt & Medicin Verlagsgesellschaft mbH,1987, 197-203.

[^28]: Streissguth, et. al. [Understanding the]{.underline} [Occurrence
    of Secondary Disabilities in Clients with Fetal Alcohol Syndrome and
    Fetal Alcohol Effects]{.underline}. Seattle, WA: University of
    Washington, 1996.

[^29]: Grant, T. M. , Ernst, C. C. , Streissguth, A. P. , Phipps, P. and
    Gendler, B. "When Case Management Isn't Enough: A Model of
    Paraprofessional Advocacy for Drug- and Alcohol-Abusing Mothers. "
    [Journal of Case Management]{.underline}. 5(1) 1996.

[^30]: Burgess, D. M. , Streissguth, A. P. "Educating Students with
    Fetal Alcohol Syndrome or Fetal Alcohol Effects. " [Pennsylvania
    Reporter]{.underline}. 22(1) 1990 1-3.

[^31]: LaDue, R. A. [A Practical Native American Guide for Caregivers of
    Children, Adolescents, and Adults with Fetal Alcohol]{.underline}

    [Syndrome and Fetal Alcohol Related Conditions.]{.underline}
    Rockville, MD: Indian Health Service, 2000.

[^32]: Abel, E. L. , and Sokel, R. J. Incidence of Fetal Alcohol
    Syndrome and Economic Impact of FAS-Related Anomalies. [Drug Alcohol
    Depend.]{.underline} 19:51-70, 1987.

[^33]: Burgess, D. M. , Streissguth, A. P. "Fetal Alcohol Syndrome and
    Fetal Alcohol Effects: Principles for Educators: *A* Special Section
    on Children at Risk. " [Phi Delta Kappan.]{.underline} 74(1) 1992
    24.

[^34]: , LaDue, R. A [A Practical Native American Guide for Caregivers
    of Children, Adolescents, and Adults with Fetal Alcohol Syndrome and
    Fetal Alcohol Related Conditions.]{.underline} Rockville, MD: Indian
    Health Service, 2000.

[^35]: LaDue, R. A. [A Practical Native American Guide for Caregivers of
    Children, Adolescents, and Adults with Fetal Alcohol Syndrome and
    Fetal Alcohol Related Conditions.]{.underline} Rockville, MD: Indian
    Health Service, 2000.

[^36]: LaDue R. A. [Psychosocial Needs Associated with FAS: Practical
    Guidelines for Parents and Caregivers]{.underline}.

    Seattle, WA: U. of Washington, 1993.

[^37]: Best Start: Ontario's Maternal, Newborn, and Early Child
    Development Center.

[^38]: Masis, K. Personal Communication, 2002.

[^39]: Russell, M. , Czarnecki, D. M. , Cowan, R. , McPherson, E. , and
    Mudar, P. "Measures of Maternal Alcohol Used as Predictors of
    Development in Early Childhood. " [Alcoholism: Clinical &
    Experimental Research]{.underline}. 15 (1991) 991-1000.

[^40]: Stevens, S. J. and Wexler, H. K. , eds. [Women and Substance
    Abuse: Gender Transparency]{.underline}. New York: Haworth Press,
    1998.

[^41]: Stevens, S. J. and Wexler, H. K. , eds. [Women and Substance
    Abuse: Gender Transparency]{.underline}. New York: Haworth Press,
    1998.

[^42]: Comfort, ML & Kaltenbach, K. "The Psychosocial History: An
    interview for pregnant and parenting women in substance abuse
    treatment and research. " In E. R. Rahdert (Ed) [Treatment for
    Drug-Exposed Women and Their Children: Advances in Research
    Methodology, NIDA Research Monograph 165]{.underline}*.* Rockville
    MD: US Department of Health and Human Services, 1996, pp. 123-142.

[^43]: Aronson, M. , Kyllerman, M. , Sabel, K. G. , Sandin, B. , and
    Olegard, R. "Children of Alcoholic Mothers: Developmental,
    Perceptual, and Behavioral Characteristics as Compared to Matched
    Controls. " [Acta Paediatrica Scandinavica]{.underline}. (1985) 74.

[^44]: Druse, M. J. and Tajuddin, N. "Effects of In Utero Ethanol
    Exposure on the Developing Serotonergic System. " [Alcoholism:
    Clinical and Experimental Research]{.underline}. 15 (1991).

[^45]: Jones, K. L. "Fetal Alcohol Syndrome. " [Pediatrics in
    Review]{.underline}. 8 (1986) 122-126.

[^46]: Jones, K. L. and Smith, D. W. "Recognition of the Fetal Alcohol
    Syndrome in Early Infancy. " [Lancet]{.underline}. 1973.

[^47]: Little, R. E. , and Streissguth, A. P. [Alcohol Use and Its
    Consequences: Fetal Alcohol Syndrome.]{.underline} Hanover, NH:
    Dartmouth Medical School Project Cork, 1988.

[^48]: Little, R. E. , and Streissguth, A. P. [Alcohol Use and Its
    Consequences: Fetal Alcohol Syndrome.]{.underline} Hanover, NH:
    Dartmouth Medical School Project Cork, 1988.

[^49]: Little, R. E. and Streissguth, A. P. "Effects of Alcohol on the
    Fetus: Impact and Prevention. " [Canadian Medical Association
    Journal]{.underline}. 125 (1981) 159-164.

[^50]: Martin, D. C. , Martin, J. C. , Streissguth, A. P. , and Lund, C.
    A. "Sucking Frequency and Amplitude in Newborns as a Function of
    Maternal Drinking and Smoking. " Galanter, M. (Ed. ) [Currents in
    Alcoholism]{.underline}. vol. 5 New York: NY: Grune & Stratton,
    1979, 359-366.

[^51]: Little, R. E. , and Streissguth, A. P. [Alcohol Use and Its
    Consequences: Fetal Alcohol Syndrome.]{.underline} Hanover, NH:
    Dartmouth Medical School Project Cork, 1988.

[^52]: Streissguth, A. P. , Barr, H. M. , Sampson, P. D. , Bookstein, F.
    L. , and Darby, B. L "Neurobehavioral Effects of Prenatal Alcohol.
    Part I, II, & III: Research Strategy. " [Neurotoxicology and
    Teratology]{.underline}. 1(5) (1989) 461-476.

[^53]: Brazleton, T. B. Neonatal behavioral assessment scale. [Clinics
    in Developmental Medicine, 50.]{.underline} London: William
    Heinemann Medical books, LTD. , 1973.

[^54]: Streissguth, A. P. , Barr, H. M. and Martin, D. C. "Maternal
    Alcohol Use and Neonatal Habituation Assessed with the Brazelton
    Scale. " [Child Development]{.underline}. 54 (1983) 1109-1118.

[^55]: Williams, R. L. , and Karacan, L. [Sleep Disorders: Diagnosis and
    Therapy]{.underline}. New York, NY: Johns Wiley & Sons, 1978.

[^56]: LaDue, R. A. [A Practical Native American Guide for Caregivers of
    Children, Adolescents, and Adults with Fetal Alcohol Syndrome and
    Fetal Alcohol Related Conditions.]{.underline} Rockville, MD: Indian
    Health Service, 2000.

[^57]: Streissguth, A. P. [Fetal Alcohol Syndrome: A Guide for Families
    and Communities]{.underline}. Baltimore, MD: Paul H. Brookes
    Publishing Co. , 1997.

[^58]: Jones, K. L. "Fetal Alcohol Syndrome. " [Pediatrics in
    Review]{.underline}. 8 (1986) 122-126.

[^59]: Morse, B. Diagnosis and thereafter: What we know now and where we
    are going. In: [Fantastic Antoine Grows Up.]{.underline} J.
    Kleinfeld, B. Morse, S. Wescott (Eds. ) Fairbanks, AK: University of
    Alaska Press, 2000.

[^60]: Ratliffe, K. T. [Clinical Pediatric Physical Therapy: A Guide for
    the Physical Therapy Team.]{.underline} Philadelphia: Mosby, 1998.

[^61]: Center for Substance Abuse Prevention. "Maternal Substance Use
    Assessment Methods Reference Manual: A Review of Screening and
    Clinical Assessment Instruments for Examining Maternal Use of
    Alcohol, Tobacco, and Other Drugs" [CSAP Special Report
    13]{.underline}. DHHS Pub. No. (SMA) 93-2059. Rockville, MD: Center
    for Substance Abuse Prevention, 1993.

[^62]: Streissguth, A. P. [Fetal Alcohol Syndrome: A Guide for Families
    and Communities]{.underline}. Baltimore, MD: Paul H. Brookes
    Publishing Co, 1997.

[^63]: Grant, T. M. , Ernst, C. C. , Streissguth, A. P. , Phipps, P. and
    Gendler, B. "When Case Management Isn't Enough: A Model of
    Paraprofessional Advocacy for Drug- and Alcohol-Abusing Mothers. "
    [Journal of Case Management]{.underline}. 5(1) 1996.

[^64]: Carmichael-Olson, H. and Burgess, D. M. , "Early Intervention for
    Children Prenatally Exposed to Alcohol and Other Drugs. " Guralnick,
    M. J. Baltimore, MD: Brookes, (Ed. ) [The Effectiveness of Early
    Intervention.]{.underline} 1997, 109-145.

[^65]: LaDue, R. A. , Streissguth, A. P. , and Randels, S. P. "Clinical
    Considerations Pertaining to Adolescents and Adults with Fetal
    Alcohol Syndrome. " Sonderegger, T. B. (Ed. ) [Perinatal Substance
    Abuse: Research Findings and Clinical Implications]{.underline}.
    Baltimore, MD: Johns Hopkins U. Press, 1992, 104-131.

[^66]: Streissguth, A. P. Personal Communication, 1992

[^67]: Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F.
    L. [Understanding the Occurrence of Secondary Disabilities in
    Clients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects]{.underline}. Seattle, WA: University of Washington, 1996.

[^68]: Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F.
    L. [Understanding the Occurrence of Secondary Disabilities in
    Clients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects]{.underline}. Seattle, WA: University of Washington, 1996.

[^69]: Waller, A. Personal Communication, 2002

[^70]: Scher, M. S. , Richardson, G. A. , Coble, P. A. , Day, N. L. ,
    and Stoffer, D. S. "The Effects of Prenatal Alcohol and Marijuana
    Exposure: Disturbances in Neonatal Sleep Cycling and Arousal. "
    [Pediatric Research]{.underline}. 24 (1988) 101-105.

[^71]: Streissguth, A. P. , Barr, H. M. and Martin, D. C. "Maternal
    Alcohol Use and Neonatal Habituation Assessed with the Brazelton
    Scale. " [Child Development]{.underline}. 54 (1983) 1109-1118.

[^72]: McCreight, B. [Recognizing and Managing Children with Fetal
    Alcohol Syndrome/Fetal Alcohol Effects: A Guidebook]{.underline}.
    Washington, DC: Child Welfare League of America, 1997.

[^73]: May, P. A. "The Epidemiololgy of Alcohol Abuse Among American
    Indians: The Mythical and Real Properties. " [American Indian
    Culture and Research Journal.]{.underline} 18: (2), 1996, pp.
    121-143.

[^74]: Rosett, H. L. "A Clinical Perspective of the Fetal Alcohol
    Syndrome. " [Alcoholism: Clinical & Experimental
    Research]{.underline}. 4 (1980) 119-122.

[^75]: Gallant, D. M. [Alcoholism: A Guide to Diagnosis, Intervention
    and Treatment]{.underline}. New York, NY: W. W. Norton & Company,
    Inc. , 1987

[^76]: Chernan, L. Personal Communication, August 2002

[^77]: Clarren, S. K. , Alvord, E. C. , Sumi, S. M. , Streissguth, A. P.
    , and Smith, D. W. "Brain Malformations Related to Prenatal Exposure
    to Ethanol. " [Journal of Pediatrics]{.underline}. 92 (1978).

[^78]: Center for Substance Abuse Prevention. "Maternal Substance Use
    Assessment Methods Reference Manual: A Review of Screening and
    Clinical Assessment Instruments for Examining Maternal Use of
    Alcohol, Tobacco, and Other Drugs" [CSAP Special Report
    13]{.underline}. DHHS Pub. No. (SMA) 93-2059. Rockville, MD: Center
    for Substance Abuse Prevention, 1993.

[^79]: Erdoes, R. and Ortiz, A. (Eds. ) [American Indian Trickster
    Tales]{.underline}. New York, NY: Viking Penguin Books, 1998.

[^80]: Walker, R. D; LaDue, R. A. An integrative approach to American
    Indian Mental Health. [Ethnic Psychiatry]{.underline} C. B.
    Wilkinson (Ed. ) New York: Plenum Press, 1986.

[^81]: Astley, S. J. and Clarren, S. K. "A Fetal Alcohol Syndrome
    Screening Tool. " [Alcohol. Clin, Exp. Res.]{.underline} 19 (1995)
    1565-1571.

[^82]: Streissguth, A. P. , LaDue, R. A. , and Randels, S. P. [A Manual
    on Adolescents and Adults with Fetal Alcohol Syndrome with Special
    Reference to American Indians]{.underline}. 2^nd^ ed. Albuquerque,
    NM: Indian Health Service, 1989.

[^83]: Everett, F. , Proctor, N. and Cartmell, B. "Providing
    Psychological Services to American Indian Children and Families. "
    [Professional Psychology: Research and Practice]{.underline}. 14
    (1983) 588-603.

[^84]: Attneave, C. L. "Therapy in Tribal Settings and Urban Network
    Intervention". [Family Process]{.underline}. 8 (1969) 192-210.

[^85]: Coles, C. D. , Smith, I. E. , Fernhoff, P. M. , and Falek, A.
    "Neonatal Neurobehavioral Characteristics as Correlates of Maternal
    Alcohol Use During Gestation. " [Alcoholism: Clinical and
    Experimental Research]{.underline}. 9 (1985).

[^86]: Streissguth, A. P. [Fetal Alcohol Syndrome: A Guide for Families
    and Communities]{.underline}. Baltimore, MD: Paul H. Brookes
    Publishing Co. , 1997.

[^87]: Healy, J. M. [Your Child's Growing Mind: A Practical Guide to
    Brain Development and Learning from Birth to
    Adolescence]{.underline}. New York: Doubleday, 1987. 1994.

[^88]: Streissguth, A. P. and Kanter, J. (Eds. ) [The Challenge of Fetal
    Alcohol Syndrome: Overcoming Secondary Disabilities]{.underline}.
    Seattle, WA: U. of Washington Press, 1997.

[^89]: Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F.
    L. [Understanding the Occurrence of Secondary Disabilities in
    Clients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects]{.underline}. Seattle, WA: University of Washington, 1996.

[^90]: Streissguth, A. P. and Kanter, J. (Eds. ) [The Challenge of Fetal
    Alcohol Syndrome: Overcoming Secondary Disabilities]{.underline}.
    Seattle, WA: U. of Washington Press, 1997.

[^91]: Coggins, T. Personal communication, June, 2000.

[^92]: Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F.
    L. [Understanding the Occurrence of Secondary Disabilities in
    Clients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects]{.underline}. Seattle, WA: University of Washington, 1996.

[^93]: Salter, A. [Psychological Assessment of Sexually Abused Children,
    Adolescents and Their Parents.]{.underline} San Francisco, CA: Sage
    Publications, 1995.

[^94]: Drabble, L. "Elements of effective services for women in
    recovery: Implications for clinicians and program supervisors. "
    [Journal of Chemical Dependency Treatment]{.underline} 6(1/2):1--21,
    1996.

[^95]: Grant, T. M. , Ernst, C. C. , McAuliff, S. and Streissguth, A. P.
    , "The Difference Game: An Assessment Tool and Intervention Strategy
    for Facilitating change in High-Risk Clients. " [Families in
    Society]{.underline}. 78(4) 1997, 429-432.

[^96]: Wexler, H. K. ; Cuadrado, M. ; Stevens, S. "Residential treatment
    for women: behavioral and psychological outcomes. " In: Stevens, S.
    J. and Wexler, H. K. , eds. [Women and Substance Abuse: Gender
    Transparency.]{.underline} New York: Haworth Press, 1998. Pp.
    213-233.

[^97]: Giunta, C. T. and Streissguth, A. P. "Patients with Fetal Alcohol
    Syndrome and Their Caretakers. " [Social Casework: The Journal of
    Contemporary Social Work]{.underline}. 69(7) 1998, 453-459.

[^98]: Sparrow, S. S. , Balla, D. A. , and Cicchetti, D. V. [Vineland
    Adaptive Behavior Scales]{.underline}. Cedar Pines, MN: American
    Guidance Service, 1984.

[^99]: Piaget, J. [The Moral Judgment of the Child]{.underline}.
    Glencoe, IL: The Free Press, 1932.

[^100]: Piaget, J. [The Origins of Intelligence in
    Children]{.underline}. New York: International Press, 1952.

[^101]: Piaget, J. "Intellectual Evolution from Adolescence to
    Adulthood. " P. H. Mussen (Ed. ). [Carmichael's Manual on Child
    Psychology]{.underline}. 3^rd^ ed. Vol. 1. New York: Basic Books,
    1980.

[^102]: Abel, E. L. "In Utero Alcohol Exposure and Developmental Delay
    of Response Inhibition. " [Alcoholism: Clinical and Experimental
    Research]{.underline}. 6 (1982): 369-376.

[^103]: Bond, N. W. "Fetal Alcohol Exposure and Hyperactivity in Rats:
    The Role of the Neurotransmitter Systems Involved in Arousal and
    Inhibition. " West, J. R. (Ed. ) [Alcohol and Brain
    Development]{.underline}. New York, NY: Oxford University, (1986)
    45-70.

[^104]: Scher, M. S. , Richardson, G. A. , Coble, P. A. , Day, N. L. ,
    and Stoffer, D. S. "The Effects of Prenatal Alcohol and Marijuana
    Exposure: Disturbances in Neonatal Sleep Cycling and Arousal. "
    [Pediatric Research]{.underline}. 24 (1988) 101-105.

[^105]: Scher, M. S. , Richardson, G. A. , Coble, P. A. , Day, N. L. ,
    and Stoffer, D. S. "The Effects of Prenatal Alcohol and Marijuana
    Exposure: Disturbances in Neonatal Sleep Cycling and Arousal. "
    [Pediatric Research]{.underline}. 24 (1988) 101-105.

[^106]: Martin, D. C. , Martin, J. C. , Streissguth, A. P. , and Lund,
    C. A. "Sucking Frequency and Amplitude in Newborns as a Function of
    Maternal Drinking and Smoking. " Galanter, M. (Ed. ) [Currents in
    Alcoholism]{.underline}. vol. 5 New York: NY: Grune & Stratton,
    1979, 359-366.

[^107]: Alexander-Roberts, C. [The ADHD Parenting Handbook]{.underline}.
    Dallas, TX: Taylor Publishing Co. , 1994.

[^108]: Barrett, K. C. and Wilson, M. A. [Child
    Development]{.underline}. Westerville, OH: Glencoe McGraw-Hill,
    1994.

[^109]: Streissguth, A. P. Personal Communication, 1984.

[^110]: LaDue, R. A. [Psychosocial Needs Associated with Fetal Alcohol
    Syndrome: Practical Guidelines for Parents and
    Caregivers]{.underline}. Seattle, WA: U. of Washington, 1993.

[^111]: Burgess, D. M. , Streissguth, A. P. "Educating Students with
    Fetal Alcohol Syndrome or Fetal Alcohol Effects. "[Pennsylvania
    Reporter]{.underline}. 22(1) 1990 1-3.

[^112]: Burgess, D. Presentation on FAS in Rolla, ND, April, 1992.

[^113]: Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F.
    L. [Understanding the Occurrence of Secondary Disabilities in
    Clients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects]{.underline}. Seattle, WA: University of Washington, 1996.

[^114]: Salter, A. [Psychological Assessment of Sexually Abused
    Children, Adolescents and Their Parents.]{.underline} San Francisco,
    CA: Sage Publications, 1995.

[^115]: White, J. L. [The Troubled Adolescent]{.underline}. New York,
    NY: Pergamon Press, 1989.

[^116]: Piaget, J. "Intellectual Evolution from Adolescence to
    Adulthood. " P. H. Mussen (Ed.). [Carmichael's Manual on Child
    Psychology]{.underline}. 3^rd^ ed. Vol. 1. New York: Basic Books,
    1980.

[^117]: Shaywitz, S. E. , Cohen, D. J. , and Shaywitz, B. A. "Behavior
    and Learning Difficulties in Children of Normal Intelligence Born to
    Alcoholic Mothers. " [Journal of Pediatrics]{.underline}. 96 (1980)
    978-982.

[^118]: Nelson, L. M. Personal communication, Sept. 2001.

[^119]: Novick, N. J. and Streissguth, A. P. "Part 2: Thoughts on
    Treatment of Adults and Adolescents Impaired by Fetal Alcohol
    Exposure. " [Treatment Today]{.underline}. 7(4) 1995, 20-21.

[^120]: Nezu, C. M. [Psychopathology in Persons with Mental Retardation:
    Clinical Guidelines for Assessment and Treatment]{.underline}.
    Champaign, IL: Research Press, 1992.

[^121]: Herman, J. [Trauma and Recovery.]{.underline} New York: Basic
    Books, 1997.

[^122]: Keane, T. M. Clinical perspectives on stress, traumatic stress,
    and PTSD in children and adolescents \[download\] \[view\] [Journal
    of School Psychology]{.underline}, 34, 1996, pg 193-197

[^123]: Keane, Terence M; Weathers, Frank W; Kaloupek, Danny G.
    Psychological assessment of post-traumatic stress disorder. [PTSD
    Research Quarterly]{.underline}, 3, 1992, 4, pg 1-7.

[^124]: Davis, D. [Reaching Out to Children with FASD: A Handbook for
    Children Affected by Fetal Alcohol Syndrome]{.underline}. Paramus,
    NJ: Center of Applied Research in Education, 1994.

[^125]: Famy, C. , Streissguth, A. P. and Unis, A. "Mental Illness in
    Adult Patients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects. " [American Journal of Psychiatry.]{.underline} 155(4) 1988
    552-554.

[^126]: Guilbert, P. [Counseling for Depression]{.underline}. Newbury
    Park, CA: Sage Publications, 1992.

[^127]: Guilbert, P. [Depression: The Evolution of
    Powerlessness]{.underline}. New York, NY: Guilford Publications,
    1992.

[^128]: Beck, A. T. , Rush, A. , and Shaw, F. F. , and Emerg, B.
    [Cognitive Therapy of Depression]{.underline}. New York: Guilford
    Publications, 1979.

[^129]: Beck, A. T. [Depression: Causes and Treatment]{.underline}.
    Philadelphia, PA: U. of Pennsylvania, 1972.

[^130]: Burack, J. A. , Enns, J. T. (Eds. ) [Attention, Development, and
    Psychopathology]{.underline}. New York, NY: Guilford Publications,
    Inc, 1997.

[^131]: Streissguth, A. P. "A Long-Term Perspective on FAS. " [Alcohol
    Health & Research World]{.underline}. 18(1) 1994, 74-81.

[^132]: Streissguth, A. P. , Aase, J. M. , Clarren, S. K. , Randels, S.
    P. , LaDue, R. A. and Smith, D. F. "Fetal Alcohol Syndrome in
    Adolescents and Adults. " [Journal of the American Medical
    Association]{.underline}. 265 (1991) 1961-1967.

[^133]: Novick, N. J. and Streissguth, A. P. "Part 2: Thoughts on
    Treatment of Adults and Adolescents Impaired by Fetal Alcohol
    Exposure. " [Treatment Today]{.underline}. 7(4) 1995, 20-21.

[^134]: Streissguth, A. P. , LaDue, R. A. , and Randels, S. P. [A Manual
    on Adolescents and Adults with Fetal Alcohol Syndrome with Special
    Reference to American Indians]{.underline}. 2^nd^ ed. Albuquerque,
    NM: Indian Health Service, 1989.

[^135]: Streissguth, A. P. , Barr, H. M. , Sampson, P. D. , Bookstein,
    F. L. , and Darby, B. L. "Neurobehavioral Effects of Prenatal
    Alcohol. Part I, II, & III: Research Strategy. " [Neurotoxicology
    and Teratology]{.underline}. 1(5) (1989) 461-476.

[^136]: Carmichael-Olson, H. , Burgess, D. M. , and Streissguth, A. P.
    [Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FASD): A
    Lifespan View with Implications for Early Intervention. Zero to
    Three]{.underline}. National Center for Clinical Infant Programs.
    13(1) 1992. 24-29.

[^137]: Carmichael-Olson, H. , Sampson, P. D. , Barr, H. M. ,
    Streissguth, A. P. , and Bookstein, F. L. "Prenatal Exposure to
    Alcohol and School Problems in Late Childhood: A Longitudinal
    Prospective Study. " [Development and Psychopathology]{.underline}.
    1992.

[^138]: Krepelin, E. [Sound and Articulation Activities for Children
    with Speech-Language Problems.]{.underline} West Nyack, New York:
    The Center for Applied Research Education, 1996.

[^139]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^140]: Forehand, R. L. and McMahon, R. [Helping the Noncompliant Child:
    A Clinician's Guide to Parent Training]{.underline}. New York, NY:
    Guilford, 1981.

[^141]: Burgess, D. M. , Lasswell, S. L. , Streissguth, A. P. [Educating
    Children Prenatally Exposed to Alcohol and Other Drugs]{.underline}.
    \[Brochure\]. Seattle, WA. Fetal Alcohol and Drug Unit, U. of
    Washington, 1993.

[^142]: LaDue, R. A., Hartness, C. L. [Journey through the Healing
    Circle.]{.underline} Olympia, WA: DSHS, 2001.

[^143]: Shaywitz, S. E., Caparulo, B. K. , and Hodgson, E. S.
    "Developmental Language Disability as a Consequence of Prenatal
    Exposure to Ethanol. " [Pediatrics]{.underline}. 68 (1981) 850-855.

[^144]: Coggins, T. Personal communication, June, 2000.

[^145]: Lubinski, R., Frattali, C. [Professional Issues in
    Speech-Language Pathology and Audiology (2^nd^
    Edition).]{.underline} Canada: Singular, 2001.

[^146]: Krepelin, E. [Sound and Articulation Activities for Children
    with Speech-Language Problems.]{.underline} West Nyack, New York:
    The Center for Applied Research Education, 1996.

[^147]: Andrade, R., and Stevens, S. J. (2001). Reading between the
    Lines: Drug --Involved Women Seeking New Identities. The 63^rd^
    Annual Scientific Meeting of the College on Problems of Drug
    Dependence, Scottsdale, AZ. , June 16-21, 2001.

[^148]: Stevens, S. J. and Wexler, H. K. , eds. [Women and Substance
    Abuse: Gender Transparency]{.underline}. New York: Haworth Press,
    1998.

[^149]: Streissguth, A. P. , Moon-Jordan, A. , and Clarren, D. K.
    "Alcoholism in Four Patients with Fetal Alcohol Syndrome:
    Recommendations of Care. "[Alcoholism Treatment
    Quarterly]{.underline}. 13(2) 1995, 89-103.

[^150]: Baxter, S. L. Adapting Talk Therapy. In [Fantastic Antione Grows
    up.]{.underline} (J. Kleinfeld, B. Morse, and S. Wescott, Eds. )
    Fairbanks, AK: University of Alaska Press, 2000.

[^151]: Lewis, T. J, Sugai, G. , Colvin, G. Reducing problem behavior
    through a school-side system of effective behavioral support:
    Investigation of a school-wide social skills training program and
    contextual interventions. [School Psychology Review]{.underline},
    [27]{.underline} (1998), 446-459.

[^152]: Lewis, T. J. , Colvin, G. , Sugai, G. (in press). The effects of
    pre-correction and active supervision on the recess behavior of
    elementary school students. [School Psychology
    Quarterly]{.underline}.

[^153]: Schleien, S. J. , et. al. [Lifelong Leisure Skills and
    Lifestyles for Persons with Developmental Disabilities]{.underline}.
    Baltimore, MD: Paul H. Brooks Publishing Co. , 1995.

[^154]: Levitt, S. [Basic Abilities: A Whole Approach: A Developmental
    Guide for Children with Disabilities]{.underline}. Chicago, IL:
    Independent Publishing Group, 1997.

[^155]: Taylor-Greene, S. , Brown, D. , Nelson, L. , Longton, J. ,
    Gassman, T. , Cohen, J. , Swartz, J. , Horner, R. H. , Sugai, G. ,
    Hall, S. School-wide behavioral support: Starting the year off
    right. [Journal of Behavioral Education]{.underline}, 7, (1997)
    99-112.

[^156]: Masis, K. Personal Communication, 2002.

[^157]: Herman, J. [Trauma and Recovery.]{.underline} New York: Basic
    Books, 1997.

[^158]: Beck, A. T. and Emery, G. [Anxiety Disorders and Phobias: A
    Cognitive Perspective]{.underline}. New York: Guilford Publications,
    1985.

[^159]: Barlow, D. H. (Ed. ) [Clinical Handbook of Psychological
    Disorders]{.underline}. 2^nd^ ed. New York, NY: Guilford Press,
    1993.

[^160]: Goldberg, M. E. "Substance-abusing women: False stereotypes and
    real needs. " [Social Work]{.underline}, 40(6):789-798, 1995.
    (130909)

[^161]: Wilsnack, R. W. , Wilsnack, S. C. [Gender and Alcohol:
    Individual and Social Perspectives.]{.underline} New Brunswick, NJ:
    Rutgers Center of Alcohol Studies, 1997.

[^162]: Wexler, H. K. ; Cuadrado, M. ; Stevens, S. "Residential
    treatment for women: behavioral and psychological outcomes. " In:
    Stevens, S. J. and Wexler, H. K. , eds. [Women and Substance Abuse:
    Gender Transparency.]{.underline} New York: Haworth Press, 1998. Pp.
    213-233.

[^163]: Woolis, DD Family works: Substance abuse treatment and welfare
    reform, [Public Welfare]{.underline}*,* 1998.

[^164]: Comfort, M. ; Kaltenbach, K. ; and Loverro, J. A search for
    strategies to engage women in substance abuse treatment. In [Social
    Work in Health Care]{.underline} 31:4, pp. 59-70 (2000).

[^165]: Boyd, G. A. [Drugs and Sex]{.underline}. Drug Abuse Prevention
    Library. New York, NY: The Rosen Group, 1993.

[^166]: Streissguth, A. P. [Fetal Alcohol Syndrome: A Guide for Families
    and Communities]{.underline}. Baltimore, MD: Paul H. Brookes
    Publishing Co. , 1997.

[^167]: Streissguth, A. P. [Fetal Alcohol Syndrome: A Guide for Families
    and Communities]{.underline}. Baltimore, MD: Paul H. Brookes
    Publishing Co. , 1997.

[^168]: Cole, J. , Tiegreen, A. (Illustrator) [Asking about Sex and
    Growing Up: A Question]{.underline}

    [and Answer Book for Boys and Girls]{.underline}. 1998.

[^169]: Streissguth, A. P. and Kanter, J. (Eds. ) [The Challenge of
    Fetal Alcohol Syndrome: Overcoming Secondary
    Disabilities]{.underline}. Seattle, WA: U. of Washington Press,
    1997.

[^170]: Boxer, M. C. , Cohler, B. J. , Herdt, G. and Irvin, F. "Gay and
    Lesbian Youth. " Tolan, P. H. and Cohler, B. J. (Eds. ) [Handbook on
    Clinical Research and Practice with Adolescents]{.underline}. New
    York: Wiley, 1993.

[^171]: Bell, R. [Changing Bodies, Changing Lives: Book for Teens on Sex
    and Relationships]{.underline}. New York: Random House, 1988.

[^172]: Graver, J. [How You Are Changing: For Discussion or Individual
    use: For Ages 8 to 11 and Parents]{.underline}. (Concordia Sex
    Education, Book 3). St. Louis, MO: Concordia Press, 1995.

[^173]: Davis, F. S. [Private Zone: A Book Teaching Children Sexual
    Assault Prevention Tools]{.underline}. Charles Franklin Press, 1984.

[^174]: Engel, B. [Beyond the Birds and the Bees: Fostering Your Child's
    Healthy Sexual Development]{.underline}. New York, NY: Pocket Books,
    1997.

[^175]: Krebill, J. , and Taylor J. [A Teaching Guide to Preventing
    Adolescent Sexual Abuse]{.underline}. Santa Cruz, CA: ETR
    Associates, 1988.

[^176]: Revised Code of Washington (RCW 10. 77). Olympia, WA: State of
    Washington.

[^177]: Salter, A. [Psychological Assessment of Sexually Abused
    Children, Adolescents and Their Parents.]{.underline} San Francisco,
    CA: Sage Publications, 1995.

[^178]: Berlin, F. S & Meinecke, C. F. (1981). Treatment of sex
    offenders with antiandrogenic medication: conceptualization, review
    of treatment modalities, and preliminary findings. [Am J
    Psychiatry]{.underline}*, 138*, 601-7.

[^179]: Meloy, J. R. [The Psychopathic Mind: Origins, Dynamics, and
    Treatment]{.underline} Northvale, N. J. : J. Aronson, 1988.

[^180]: Groh, A. N. [Men who rape: The psychology of the
    offender]{.underline}. New York: Plenum Press,1979.

[^181]: Kahn, T. [Pathways]{.underline}. Brandon, VT: Safer Society
    Press, 1998.

[^182]: Valliant, P. M. , Asu, M. E. , and Howitt, R. "Cognitive Styles
    of Caucasian and Native Indian Juvenile Offenders. " [Psychological
    Reports]{.underline}. 52 (1983) 87-92.

[^183]: Ryan, G. ; Lane, S. (eds. ) [Juvenile Sex
    Offenders.]{.underline} San Francisco, CA: Jossey-Bass, 1997

[^184]: Kahn, T. [Pathways]{.underline}. Brandon, VT: Safer Society
    Press, 1998.

[^185]: Kahn, T. [Roadmaps to Recovery]{.underline}. Brandon, VT: Safer
    Society Press, 1999.

[^186]: Laws, D. R. , O'Donohue, W. (Eds. ) [Sexual
    Deviance.]{.underline} New York: The Guilford Press, 1997.

[^187]: Salter, A. Psychological Assessment of Sexually Abused Children,
    Adolescents and Their Parents. San Francisco, CA: Sage Publications,
    1995.

[^188]: Prentky, R. A. (1997). Arousal reduction in sexual offenders: A
    review of antiandrogen interventions. *Sexual Abuse: A Journal of
    research and Treatment, 9*, 335-348.

[^189]: Meyer, W. J. , Cole, C. & Emory, E. (1992). \"Depo Provera
    treatment for sex offending behavior: an evaluation of outcome\".
    *Bulletin of the American Academy of Psychiatry & Law, 20*, 249-59.

[^190]: McClannahan, L. E. ; Krantz, P. J. In Search of Solutions to
    Prompt Dependance. In: D. M. Baur E. M. Peindston (Eds) [Environment
    and Behavior]{.underline}. Boulder, CO: Westview Press, 1997

    ^?^ Hart, B. M. ; Risley, . R. [How to Use Incidental Teaching for
    Calaboratizing Language]{.underline}. Austin, TX:PRO-ED, 1982.

[^191]: McClannahan, L. E. ; Krantz, P. J. In Search of Solutions to
    Prompt Dependance. In: D. M. Baur E. M. Peindston (Eds) [Environment
    and Behavior]{.underline}. Boulder, CO: Westview Press, 1997

[^192]: McDuff, G. S. ; Kramer, P. J; McClannahan, L. E. Teaching
    Children with Autism to Use Photographic Activity Schedules:
    Maintenance and Generalization of Complex Response Chains. [Journal
    of Applied Behavior Analysis]{.underline} (26) 89-95, 1993.

[^193]: Wender, P. H. [The Hyperactive Child, Adolescent and
    Adult]{.underline}. New York, NY: Oxford University Press, 1987.

[^194]: Moise, L. [Barbra and Fred Grownups Now, Living Fully with
    Developmental Disabilities]{.underline}. Fort Bragg, CA: Lost Coast
    Press, 1997.

[^195]: McCreight, B. [Recognizing and Managing Children with Fetal
    Alcohol Syndrome/Fetal Alcohol Effects: A Guidebook]{.underline}.
    Washington, DC: Child Welfare League of America, 1997.

[^196]: Lawrence, K. E. , (Ed. ) Niemeyer, S. [Caregiver Education Guide
    for Children with Developmental Disabilities]{.underline}. 1994.

[^197]: Alexander-Roberts, C. [The ADHD Parenting Handbook]{.underline}.
    Dallas, TX: Taylor Publishing Co, 1994.

[^198]: Antonello, S. J. [Social Skills Development: Practical
    Strategies for Adolescents and Adults with Developmental
    Disabilities]{.underline}. Needham Heights, MA: Allyn & Bacon, 1996.

[^199]: Carmichael-Olson, H. and Burgess, D. M. , "Early Intervention
    for Children Prenatally Exposed to Alcohol and Other Drugs. "
    Guralnick, M. J. Baltimore, MD: Brookes, (Ed. ) [The Effectiveness
    of Early Intervention.]{.underline} 1997, 109-145.

[^200]: Copeland, E. D. , Love, V. [Attention, Please! A Comprehensive
    Guide for Successfully Parenting Children with Attention Disorders &
    Hyperactivity]{.underline}. Plantation, FL: Specialty Press, 1996.

[^201]: Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F.
    L. [Understanding the Occurrence of Secondary Disabilities in
    Clients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects]{.underline}. Seattle, WA: University of Washington, 1996.

[^202]: Streissguth, A. P. and Randels, S. P. "Long-Term Effects of
    Fetal Alcohol Syndrome. " Robinson, G. C. and Armstrong, R. W. (Eds.
    ) [Alcohol and Child Family Health]{.underline}. Vancouver, BC: U.
    of British Columbia, 1988, 135-151.

[^203]: Bataille, G. M. and Sands, K. M. [American Indian Women: Telling
    Their Lives]{.underline}. Lincoln, NE: U. of Nebraska, 1987.

[^204]: Boyce, W. T. and Boyce J. C. "Acculturation and Changes in
    Health Among Navajo School Students. " [Social Sciences and
    Medicine]{.underline}. 17 (1983) 219-226.

[^205]: Black, C. [It Will Never Happen to Me.]{.underline} Center City,
    MN : Hazelden, 1987.

[^206]: Beattie, M. [Codependent No More]{.underline} New York, NY:
    Harper/Hazelden, 1987.

[^207]: Beattie, M. [Beyond Codependency.]{.underline} New York: Walker,
    1990.

[^208]: Gidley, M. (Mick) [With one sky above us: life on an Indian
    reservation at the turn of the century.]{.underline} Seattle:
    University of Washington Press, 1985, c1979.

[^209]: Sorkin, A. L. [The Urban American Indian]{.underline}.
    Lexington, MA: Lexington Books, 1978.

[^210]: Walker, R. D; LaDue, R. A. An integrative approach to American
    Indian Mental Health. [Ethnic Psychiatry]{.underline} C. B.
    Wilkinson (Ed. ) New York: Plenum Press, 1986.

[^211]: Flack, F. and Draghi, S. [The Nature and Treatment of
    Depression]{.underline}. New York, NY: John Wiley & Sons, 1975.

[^212]: Feighner, J. P. and Boyer, W. F. [Diagnosis and
    Depression]{.underline}. New York, NY: Wiley Liss, 1992.

[^213]: Alcoholics Anonymous, ["Big Book. "]{.underline} New York:
    Alcoholics Anonymous, 1988.

[^214]: Black, C. [It Will Never Happen to Me.]{.underline} Center City,
    MN : Hazelden, 1987.

[^215]: Wilsnack, R. W. , Wilsnack, S. C. [Gender and Alcohol:
    Individual and Social Perspectives.]{.underline} New Brunswick, NJ:
    Rutgers Center of Alcohol Studies, 1997.

[^216]: Hyson, M. C. [The Emotional Development of Young Children:
    Building An Emotion-Centered Curriculum.]{.underline} New York:
    Teachers College Columbia University, 1994.

[^217]: Bradley, K. A. , Badrinath, S. , Bush, K. , Boyd-Wickizer, J. ,
    Anawalt, B. "Medical Risks for Women who Drink Alcohol. [Journal of
    General Internal Medicine.]{.underline} 13(1198) 627-638.

[^218]: Streissguth, A. P. and Kanter, J. (Eds. ) [The Challenge of
    Fetal Alcohol Syndrome: Overcoming Secondary
    Disabilities]{.underline}. Seattle, WA: U. of Washington Press,
    1997.

[^219]: McKinney v. State, No. 64783-6, SUPREME COURT OF WASHINGTON, 134
    Wn. 2d 388; 950 P. 2d 461; 1998 Wash. LEXIS 11, May 28, 1997, Oral
    Argument, February 5, 1998

[^220]: Braam v. State of Washington, Cause #:No. 98 2 01570 1

[^221]: LaDue, R. A. , Streissguth, A. P. , and Randels, S. P. "Clinical
    Considerations Pertaining to Adolescents and Adults with Fetal
    Alcohol Syndrome. " Sonderegger, T. B. (Ed. ) [Perinatal Substance
    Abuse: Research Findings and Clinical Implications]{.underline}.
    Baltimore, MD: Johns Hopkins U. Press, 1992, 104-131.

[^222]: Shelov, S. P. "Caring for Your Baby and Young Child: Birth to
    Age 5. " [The American Academy of Pediatrics]{.underline}. New York,
    NY: Bantam Books, Inc. , 1993.

[^223]: Shelov, M. D. , FAAP, S. P. (Ed. )[The Complete and
    Authoritative Guide: Caring for Your Baby and Young Child: Birth to
    Age 5]{.underline}. New York: Bantam, 1991.

[^224]: Centers for Disease Control and Prevention-FAS Home Page, 2002.

[^225]: Streissguth, A. P. "The 1990 Betty Ford Lecture: What Every
    Community Should Know about Drinking During Pregnancy and the
    Lifelong Consequences for Society. " [Substance Abuse]{.underline}.
    12(3) 1991) 14-127.

[^226]: Glasser, J. "The Cycle of Shame**:** The heartbreak of fetal
    alcohol syndrome in South Africa" [US News and World
    Reports.]{.underline} May 20, 2002.

[^227]: Stevens, S. J. and Wexler, H. K. , eds. [Women and Substance
    Abuse: Gender Transparency]{.underline}. New York: Haworth Press,
    1998.

[^228]: Wechsberg, W. M. , Craddock, S. G. , and Hubbard, R. L. How are
    women who enter substance abuse treatment different than men?: A
    gender comparison from the Drug Abuse Treatment Outcome Study
    (DATOS). In: Stevens, S. J. and Wexler, H. K. , eds. [Women and
    Substance Abuse: Gender Transparency]{.underline}. New York: Haworth
    Press, 1998. pp. 97--115.

[^229]: Vannicelli, M. (1984) Treatment Outcome of Alcoholic Women: The
    State of the Art in Relation to Sex Bias and Expectancy Effects, in
    [Alcohol Problems in Women]{.underline}, ed. Sharon C. Wilsnack and
    Linda J. Beckman, Alcohol Problems in Women.

[^230]: Streissguth, A. P. and Kanter, J. (Eds. ) [The Challenge of
    Fetal Alcohol Syndrome: Overcoming Secondary
    Disabilities]{.underline}. Seattle, WA: U. of Washington Press,
    1997.

[^231]: Little, B. B. , Snell, L. M. , Rosenfeld, C. R. , Gilstrap, L.
    C. , and Grant, N. F. "Failure to Recognize Fetal Alcohol Syndrome
    in Newborn Infants. " [American Journal of Dis. Child]{.underline}.
    144 (1990) 1142-1146.

[^232]: Grella, C. E. "Background and Overview of Mental Health and
    Substance Abuse Treatment Systems: Meeting the Needs of Women who
    are Pregnant or Parenting [Journal of Psychoactive
    Drugs]{.underline} 28 (1996) 319-343.

[^233]: Carmichael-Olson, H. and Burgess, D. M. , "Early Intervention
    for Children Prenatally Exposed to Alcohol and Other Drugs. "
    Guralnick, M. J. Baltimore, MD: Brookes, (Ed. ) [The Effectiveness
    of Early Intervention.]{.underline} 1997, 109-145.

[^234]: Guralnick, M. J. (Ed. ) [The Effectiveness of Early
    Intervention]{.underline}. Baltimore, MD: Paul H. Brooks Publishing
    Co, 1996.

[^235]: Grafe, S. [FAS; A guide for Daily Living]{.underline}. Victoria,
    BC: Society of Special Needs Adoptive Parents, 1994.

[^236]: Hartness, C. FAS Summit, Anchorage, AK, November, 2001.

[^237]: Fenwick, E. and Smith T. [Adolescence: The Survival Guide for
    Parents and Teenagers]{.underline}. New York, NY: DK Publishing,
    Inc, 1994.

[^238]: Greenspan, S. I. [The Challenging Child]{.underline}. Reading,
    MA: Perseus Books, 1995.

[^239]: Edelstein, S. B. et. al. [Children with Prenatal Alcohol or
    Other Drug Exposure: Weighing the Risks of Adoption]{.underline}.
    Washington DC: Child Welfare League of America, 1996.

[^240]: Guralnick, M. J. (Ed. ) [The Effectiveness of Early
    Intervention]{.underline}. Baltimore, MD: Paul H. Brooks Publishing
    Co, 1996.

[^241]: Burgess, D. Presentation on FAS in Rolla, ND, April, 1992.

[^242]: Malbin, D. B. "Stereotypes and Realities. " Kleinfeld, J. and
    Wescott, S. (Eds. ) [Fantastic Antoine Succeeds]{.underline}. United
    States: University of Alaska Press, 1993.

[^243]: Appendix 8, Resource Guide

[^244]: Grafe, S. [FAS; A guide for Daily Living]{.underline}. Victoria,
    BC: Society of Special Needs Adoptive Parents, 1994.

[^245]: Jacobson, J. W. et. al. [Community Living for People with
    Developmental and Psychiatric Disabilities]{.underline}. Baltimore,
    MD: Johns Hopkins University Press, 1992.

[^246]: Casto, L. D. Fetal Alcohol Syndrome: 2001 Status Update. Alaska
    Department of Health and Social Services; Office of Fetal Alcohol
    Syndrome: Juneau, AK, 2002.

[^247]: Stengle, L. J. [Laying Community Foundations: For Your Child
    with a Disability: How to Establish Relationships That Will Support
    Your Child After You're Gone]{.underline}. Bethesda, MD: Woodbine
    House, 1996.

[^248]: Foxcraft, D. (Ed) [The Sayings of Our First People.]{.underline}
    Penticton, BC. : Theytus Books, LTD, 1995.

[^249]: Miller, J. [American Indian Families]{.underline} (True Book)
    Danbury, CN: Children's Press, 1997.

[^250]: Attneave, C. L. "Therapy in Tribal Settings and Urban Network
    Intervention". [Family Process]{.underline}. 8 (1969) 192-210.

[^251]: Mihesuah, D. A. [American Indians: Stereotypes &
    Realities]{.underline}. Atlanta, GA: Clarity Press, 1997.

[^252]: Kopera-Frye, K. , Tsewenaldin, P. , and Streissguth, A. P.
    "Preventing FAS by Empowering Native American Chemical Dependency
    Counselors. " [The I. H. S. Primary Care Provider]{.underline}.
    19(4) 1994, 66-69.

[^253]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^254]: Burgess, D. M. , Streissguth, A. P. "Educating Students with
    Fetal Alcohol Syndrome or Fetal Alcohol Effects. " [Pennsylvania
    Reporter]{.underline}. 22(1) 1990 1-3.

[^255]: Burgess, D. M. , Lasswell, S. L. , Streissguth, A. P. "Educating
    Children Prenatally Exposed to Alcohol and Other Drugs".
    \[Brochure\]. Seattle, WA. Fetal Alcohol and Drug Unit, U. of
    Washington, 1993.

[^256]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^257]: Evensen, D. Working with adolescents in high school: Techniques
    that help. In [Fantastic Antione Grows up.]{.underline} (J.
    Kleinfeld, B. Morse, and S. Wescott, Eds. ) Fairbanks, AK:
    University of Alaska Press, 2000.

[^258]: Alexander, K. L. , Entwisle, D. R. , et. al. [Achievements in
    the First Two Years of School: Patterns and Processes (Monographs of
    the Society for Research in Child Development, Serial No. 218,
    V)]{.underline}. Chicago, IL: U. of Chicago Press, 1974.

[^259]: Boyd, T. A. , Ernhart, C. B. , Greene, T. H. , Sokol, R. J. ,
    and Matler, S. "Prenatal Alcohol Exposure and Sustained Attention in
    the Preschool Years. " [Neurotoxicology and Teratology]{.underline}.
    (1991) 13.

[^260]: Greene, T. , Ernhart, C. B. Ager, J. , Sokol, R. , Martier, S. ,
    and Boyd, T. "Prenatal

    Alcohol Exposure and Cognitive Development in the Preschool Years.

    "[Neurotoxicology and Teratology]{.underline}. 13 (1991).

[^261]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^262]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^263]: Burgess, D. Presentation on FAS in Rolla, ND, April, 1992.

[^264]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^265]: Greenspan, S. I. [The Child with Special Needs: Encouraging
    Intellectual and Emotional Growth]{.underline}. Reading, MA:
    Addison-Wesley Longman, Inc. ,1998.

[^266]: Greenspan, S. I. [Playground Politics]{.underline}. Reading, MA:
    Perseus Books, 1993.

[^267]: Sohberg, M. M. and Mateer, C. A. "Effectiveness of an
    Attention-Training Program. " [Journal of Clinical & Experimental
    Neuropsychology]{.underline}. 9 (1987) 117-130.

[^268]: Soby, J. M. [Prenatal Exposure to Drugs/Alcohol: Characteristics
    and Educational Implications of Fetal Alcohol Syndrome and Cocaine
    -- Polydrug Effects]{.underline}. Springfield, IL: Charles C. Thomas
    Press, 1996.

[^269]: Brown, R. T. , Coles, C. D. , Smith, I. E. , Platzman, K. A. ,
    Silverstein, J. , Erickson, S. , and Falek, A. "Effects of Prenatal
    Alcohol Exposure at School age 11: Attention and Behavior. "
    [Neurotoxicology and Teratology]{.underline}. 13 (1991) 369-376.

[^270]: Kleinfeld, J. [Fantastic Antoine Grows Up]{.underline}. United
    States: University of Alaska Press, 2000.

[^271]: Kopera-Frye, K. , Dehaene, S. , and Streissguth, A. P.
    "Impairments of Number Processing Induced by Prenatal Alcohol
    Exposure. " [Neuropsychologia]{.underline}. 34 (12) 1996, 1187-1196.

[^272]: Evensen, D. Working with adolescents in high school: Techniques
    that help. In [Fantastic Antione Grows up.]{.underline} (J.
    Kleinfeld, B. Morse, and S. Wescott, Eds. ) Fairbanks, AK:
    University of Alaska Press, 2000. ,

[^273]: Darby, B. L. , Streissguth, A. P. and Smith, D. W. "A
    Preliminary Follow-up of Eight Children Diagnosed with Fetal Alcohol
    Syndrome in Infancy. " [Neurobehavioral Toxicology &
    Teratology.]{.underline} 3 (1981) 157-159.

[^274]: Streissguth, A. P. A Long-Term Perspective on FAS. " [Alcohol
    Health & Research World]{.underline}. 18(1) 1994, 74-81.

[^275]: Burgess, D. Presentation on FAS in Rolla, ND, April, 1992.

[^276]: Tanner, P. A Demonstration Classroom for Young Children with
    FAS. [The Challenge of Fetal Alcohol Syndrome. Streissguth, A. P. ,
    Kantor, J. (Eds. ) Seattle, WA :University of Washington Press,
    1997.]{.underline}

[^277]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^278]: Streissguth, A. P. [Fetal Alcohol Syndrome: A Guide for Families
    and Communities]{.underline}. Baltimore, MD: Paul H. Brookes
    Publishing Co. , 1997.

[^279]: LaDue, R. A. , Schacht, R. M. , Halverson-Tanner, P. , McGowan,
    M. [Fetal Alcohol Syndrome: A Manual to Aid in Vocational
    Rehabilitation]{.underline}. Flagstaff, AZ: Northern Arizona U. ,
    1999.

[^280]: Hyson, M. C. [The Emotional Development of Young Children:
    Building An Emotion-Centered Curriculum.]{.underline} New York:
    Teachers College Columbia University, 1994.

[^281]: Streissguth, A. P. [Fetal Alcohol Syndrome: A Guide for Families
    and Communities]{.underline}. Baltimore, MD: Paul H. Brookes
    Publishing Co. , 1997.

[^282]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^283]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^284]: LaDue, R. A. , Schacht, R. M. , Halverson-Tanner, P. , McGowan,
    M. [Fetal Alcohol Syndrome: A Manual to Aid in Vocational
    Rehabilitation]{.underline}. Flagstaff, AZ: Northern Arizona U. ,
    1999.

[^285]: Streissguth, A. P. [Fetal Alcohol Syndrome: A Guide for Families
    and Communities]{.underline}. Baltimore, MD: Paul H. Brookes
    Publishing Co. , 1997.

[^286]: Kleinfeld, J. [Fantastic Antoine Succeeds]{.underline}. United
    States: University of Alaska Press, 1993.

[^287]: Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F.
    L. [Understanding the Occurrence of Secondary Disabilities in
    Clients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects]{.underline}. Seattle, WA: University of Washington, 1996.

[^288]: Erdoes, R. and Ortiz, A. (Eds. ) [American Indian Trickster
    Tales]{.underline}. New York, NY: Viking Penguin Books, 1998.

[^289]: Erdoes, R. and Ortiz, A. (Eds. ) [American Indian Myths and
    Legends]{.underline}. New York, NY: Pantheon Books, 1985.

[^290]: Sattler, J. M. [Assessment of Children's
    Intelligence.]{.underline} New York: W. B. Sounders Company, 1974.

[^291]: Brady, J. P. and Grollman, S. [Risks and Reality: Teaching
    Preschool Children Affected by Substance Abuse]{.underline}.
    Washington, DC: DHHS, 1994.

[^292]: Evensen, D. Working with adolescents in high school: Techniques
    that help. In [Fantastic Antione Grows up.]{.underline} (J.
    Kleinfeld, B. Morse, and S. Wescott, Eds. ) Fairbanks, AK:
    University of Alaska Press, 2000.

[^293]: Burgess, D. M. , Streissguth, A. P. "Educating Students with
    Fetal Alcohol Syndrome or Fetal Alcohol Effects. " [Pennsylvania
    Reporter]{.underline}. 22(1) 1990 1-3.

[^294]: Tanner, P. A Demonstration Classroom for Young Children with
    FAS. [The Challenge of Fetal Alcohol Syndrome. Streissguth, A. P. ,
    Kantor, J. (Eds. ) Seattle, WA : University of Washington Press,
    1997.]{.underline}

[^295]: Perske, R. [Unequal Justice? What Can Happen When People with
    Mental Retardation or Other Developmental Disabilities Encounter the
    Criminal Justice System]{.underline}. Nashville, TN: Abdingdon
    Press, 1991.

[^296]: Fehr, L. "The criminal justice system and fetal alcohol
    syndrome. [Counselor]{.underline}. 13(3), 1995.

[^297]: Kleinfeld, J. [Fantastic Antoine Succeeds]{.underline}. United
    States: University of Alaska Press, 1993.

[^298]: Streissguth, A. P. , Barr, H. M. , Kogan, J. , and Bookstein, F.
    L. [Understanding the Occurrence of Secondary Disabilities in
    Clients with Fetal Alcohol Syndrome and Fetal Alcohol
    Effects]{.underline}. Seattle, WA: University of Washington, 1996.

[^299]: LaDue, R. A. , Dunne, T. "Legal Issues and FAS. " [The Challenge
    of Fetal Alcohol Syndrome: Overcoming Secondary
    Disabilities]{.underline}. Streissguth, A. P. and Kantor, J. (Eds. )
    Seattle, WA: U. of Washington Press, 1997.

[^300]: Revised Code of Washington (RCW 10. 77). Olympia, WA: State of
    Washington.

[^301]: LaDue, R. A. , Dunne, T. "Legal Issues and Fetal Alcohol
    Syndrome. " [The FEN Pen]{.underline}. 3 1995, 6-7.

[^302]: LaDue, R. A. , Dunne, T. "Capacity and FAS. " [The FEN
    Pen]{.underline}. 5(1) 1996, 2-6.

[^303]: Revised Code of Washington (RCW 10. 77). Olympia, WA: State of
    Washington.

[^304]: LaDue, R. A. , Dunne, T. "FAS and the Decision to Decline. "
    [The FEN Pen]{.underline}. 5(2) 1996, 2-6.

[^305]: Ferry, D. "Fetal Alcohol Syndrome: An Effective Capital Defense.
    " [CACJ/Forum]{.underline}, 24(2) 4-50.

[^306]: Edelstein, S. B. et. al. [Children with Prenatal Alcohol or
    Other Drug Exposure: Weighing the Risks of Adoption]{.underline}.
    Washington DC: Child Welfare League of America, 1996.

[^307]: McKinney v. State, No. 64783-6, SUPREME COURT OF WASHINGTON, 134
    Wn. 2d388; 950 P. 2d 461; 1998 Wash. LEXIS 11, May 28, 1997, Oral
    Argument, February 5, 1998, Filed.

[^308]: Edelstein, S. B. et. al. [Children with Prenatal Alcohol or
    Other Drug Exposure: Weighing the Risks of Adoption]{.underline}.

    Washington DC: Child Welfare League of America, 1996.

[^309]: Zitkala, S. A. [American Indian Stories]{.underline}. Lincoln,
    NE: U. of Nebraska Press, 1921.

[^310]: Getches, D. H. , Wilkinson, C. F. , Williams, R. A. [Federal
    Indian Law.]{.underline} St. Paul, MN: West Publishing Co. , 1993.

[^311]: DeLoria, V. ; Wilkins, D. E. [Tribes, Treaties, and
    Constitutional Tribulations.]{.underline} Austin, TX: University of
    Texas Press, 2000.

[^312]: Wilkinson, Charles F. , American Indians, time, and the law:
    Native societies in a modern constitutional democracy. New Haven:
    Yale University Press, 1987.

[^313]: DeLoria, V. [The Indian Reorganization Act: congresses and
    bills.]{.underline} Norman, OK: University of Oklahoma Press, 2002.

[^314]: Centers for Disease Control and Prevention, 2002.

[^315]: Casto, L. D. Fetal Alcohol Syndrome: 2001 Status Update. Alaska
    Department of Health and Social Services; Office of Fetal Alcohol
    Syndrome: Juneau, AK, 2002.

[^316]: Indian Fetal Alcohol Syndrome Prevention and Treatment Act:
    Hearing Before the Committee of Interior and Insular Affairs, House
    Representatives, 102^nd^ Congress, 2^nd^ Session. On H. R. 1322.
    Washington, DC, March 5, 1992.

[^317]: Blume, S. B. [What You Can Do to Prevent Fetal Alcohol Syndrome:
    A Professional's Guide]{.underline}. Edina, MN: Johnson Institute,
    1992.

[^318]: Nevitt, A. "Fetal Alcohol Syndrome. " [Drug Abuse Prevention
    Library]{.underline}. New York: NY: The Rosen Group Publishing
    Group, Inc. , 1995.

[^319]: LaDue, R. A. , Carmichael, H. , Clarren, S. , Beck, S. Seattle,
    WA: FAS-DPN, 1996.

[^320]: Clarren, S. K. and Astley, S. J. "The Development of the Fetal
    Alcohol Syndrome Diagnostic and Prevention Network in Washington
    State. " Streissguth, A. P. and Canter, J. (Eds. ) [The Challenge of
    Fetal Alcohol Syndrome: Overcoming Secondary
    Disabilities]{.underline}. Seattle, WA: U. of Washington, 1997.

[^321]: Astley, S. J. and Clarren, S. K. "A Fetal Alcohol Syndrome
    Screening Tool. " [Alcohol. Clin, Exp. Res.]{.underline} 19 (1995)
    1565-1571.

[^322]: Streissguth, A. P. , and O'Malley, K. D. "Fetal Alcohol
    Syndrome/Fetal Alcohol Effects: Secondary Disabilities and Mental
    Health Approaches. " [Treatment Today]{.underline}. 9(2) 1997,
    16-17.

[^323]: Coles, C. D. , Smith, I. E. , and Falek, A. "A Neonatal Marker
    for Cognitive Vulnerability to Alcohol's Teratogenic Effects. "
    [Alcoholism: Clinical and Experimental Research]{.underline}. 11
    (1987).

[^324]: Burgess, D. M. , Lasswell, S. L. , Streissguth, A. P. "Educating
    Children Prenatally Exposed to Alcohol and Other Drugs".
    \[Brochure\]. Seattle, WA. Fetal Alcohol and Drug Unit, U. of
    Washington, 1993.

[^325]: LaDue, R. A. [Psychosocial Needs Associated with Fetal Alcohol
    Syndrome: Practical Guidelines for Parents and
    Caregivers]{.underline}. Seattle, WA: U. of Washington, 1993.

[^326]: Tanner, P. A Demonstration Classroom for Young Children with
    FAS. [The Challenge of Fetal Alcohol Syndrome. Streissguth, A. P. ,
    Kantor, J. (Eds. ) Seattle, WA : University of Washington Press,
    1997.]{.underline}

[^327]: Luthar, S. S. , Burack, J. A. , Cicchetti, D. , Weisz, J. R.
    (Eds. ) [Developmental Psychopathology.]{.underline} Cambridge:
    Cambridge University Press, 1997.

[^328]: Hare, R. D. Without conscience: the disturbing world of the
    psychopaths among us. New York: Guilford Press, 1999.

[^329]: Hare, R. D. , Hart, S. D. , & Harpur, T. J. Psychopathy and the
    DSM-IV criteria for antisocial personality disorder. [Journal of
    Abnormal Psychology]{.underline}*, 100*(3), 1991, 391-398.

[^330]: American Psychiatric Association. [Diagnostic and Statistical
    Manual of Mental Disorders]{.underline}. (4^th^ ed. ) Washington,
    DC: American Psychiatric Association, 1994.

[^331]: Hare, R. D. The PCL-R assessment of psychopathy: Some issues and
    concerns. [Legal and Criminological Psychology]{.underline}*, 3*,
    (1988) 101-122.

[^332]: Meloy, J. R. [The Psychopathic Mind: Origins, Dynamics, and
    Treatment]{.underline} Northvale, N. J. : J. Aronson, 1988.

[^333]: Burack, J. A. , Enns, J. T. (Eds. ) [Attention, Development, and
    Psychopathology]{.underline}. New York, NY: Guilford Publications,
    Inc, 1997.

[^334]: Kopera-Frye, K. , Carmichael-Olson, H. , and Streissguth, A. P.
    "Teratogenic Effects of Alcohol on Attention. " [Attention,
    Development, and Psychopathology]{.underline}. New York: NY:
    Guilford Press, 1997, 171-204.

[^335]: Wender, P. H. [The Hyperactive Child, Adolescent and
    Adult]{.underline}. New York, NY: Oxford University Press, 1987.

[^336]: Mannuzza, S. , Klein, R. G. , Bessler, A. , Malloy, P. , and La
    Padula, M. "Adult Outcome of Hyperactive Boys: Educational
    Achievement, Occupational Rank, and Psychiatric Status. " [Archives
    of General Psychiatry]{.underline}. 50 (1993) 565-576.

[^337]: Achenbach, T. M. [Developmental Psychopathology]{.underline}.
    New York, NY: Ronald, Press, 1974.

[^338]: Cohen, D. J. and Volkmar, M. D. , Fred R. (Eds. ) [Handbook of
    Autism and Pervasive Development Disorders]{.underline}. New York,
    NY: John Wiley and Sons, 1997.

[^339]: Davis, D. [Reaching Out to Children with FASD: A Handbook for
    Children Affected by Fetal Alcohol Syndrome]{.underline}. Paramus,
    NJ: Center of Applied Research in Education, 1994.

[^340]: Linehan, M. [Cognitive-Behavioral Treatment of Borderline
    Personality Disorder.]{.underline} New York: Guilford Press, 1993.

[^341]: Beck, A. T. , Rush, A. , and Shaw, F. F. , and Emerg, B.
    [Cognitive Therapy of Depression]{.underline}. New York: Guilford
    Publications, 1979.

[^342]: Flack, F. and Draghi, S. [The Nature and Treatment of
    Depression]{.underline}. New York, NY: John Wiley & Sons, 1975.

[^343]: Badal, D. W. [Treatment of Depression and Related Moods: A
    Manual for Psychotherapists]{.underline}. Dunmore, PA: Jason
    Aronson, Inc. , 1989.

[^344]: Sattler, J. M. [Assessment of Children's
    Intelligence.]{.underline} New York: W. B. Sounders Company, 1974.

[^345]: Herman, J. [Trauma and Recovery.]{.underline} New York: Basic
    Books, 1997.

[^346]: Keane, T. M. Clinical perspectives on stress, traumatic stress,
    and PTSD in children and adolescents [Journal of School
    Psychology]{.underline}, 34, 1996, pg 193-197.

[^347]: Braam V. State of Washington, Whatcom County Superior Court
    under Cause #:No. 98 2 01570 1

[^348]: American Psychiatric Association. [Diagnostic and Statistical
    Manual of Mental Disorders]{.underline}. (4^th^ ed. ) Washington,
    DC: American Psychiatric Association, 1994.

[^349]: Plake, B. S. , Impara, J. C. , Murphy, L. L. [The Fourteenth
    Mental Measurements Yearbook.]{.underline} Lincoln, NE: University
    of Nebraska, 2001.

[^350]: Achenbach, T. M. and Edelbrock, G. [Manual for the Behavior
    Checklist and Revised Child Behavior Profile]{.underline}.
    Burlington, VT: U. of Vermont, Department of Psychiatry, 1983.

[^351]: Johnson, T. and Hughes, T. L. Reliability and concurrent
    validity of the CAGE screening questions among lesbians. Under
    review, [Journal of Substance Abuse Treatment.]{.underline}

[^352]: Kapp, F. M. E. ; O'Malley, K. D. [Watch for the
    Rainbows.]{.underline} Calgary, Alberta: Frances Kapp Education,
    2001.

[^353]: FASLINK -- Internet connections for education and support for
    families of children with FAS.

    http://treefort. org/\~tjk/faslink.htm

    http://www.come-over.to/FAS/faslink.htm

    http://laran.waisman.wisc.edu/fv/www/lists/FAS-LINK.htm

[^354]: Tupin, J. P. , Shader, R. I. , and Harnett, D. S. (Eds. )
    [Handbook of Clinical Psychopharmacology]{.underline}. 2^nd^ ed.
    Dunmore, PA: Jason Aronson, Inc. , 1989.

[^355]: Kelleman, T. "Starz" website, 2002