HDTenEightyP/NetNews huggingface dataset:
Original-From: 55539-Duncan <ixcim!bill>
Newsgroups: bit.listserv.autism
Date:         Thu, 5 Nov 1992 07:48:51 CST
              <AUTISM@SJUVM.BITNET>
From:         bill@IXCIM.ATT.COM
Subject:      Re: Alex at kindergarten

[ Repost - I messed up the address last night - Bill ]

Hang in there. They're just waiting for you to give
up and be quiet - then they've won.

Isaac was in a special needs prekindergarten class last
year and it was awful. We had just moved to Illinois into
what was suppose to be a good school district. We enrolled
Isaac, expecting a good program.

The teacher meant well, but she didn't know what she was
doing. None of them had autism training. No real therapy.
The therapists would come in for integrated therapy and
basically just did an aide's job while they were there.

His IEP was awful. 3 or 4 tasks to accomplish. No major
goals. He used to flip out on busses and they wouldn't
close the shades, so he lost 1/3 of his school day that
way. His passivity was taken as "good behavior". Everything
hand-over-hand rather than really working with him. I
could go on and on and on. It was bad.

We tried to change his IEP, and everything we wanted always
got watered down to this insubstantial stuff. And what we
were discussing always seemed to get changed in the transition
to paper.

By being total nuisances (meaning we didn't stop trying to
improve his program), the finally gave in and put him where he
should have been to begin with - private placement in a school
specializing in autism. He's getting real therapy, they really
work with him, and he doesn't come home with all these glued
crafts he did himself - "hand-over-hand" :-) But it took fighting
the school (which recommended against placement), and a fairly
large report we compiled and sent in on our own. I think our
report ended up getting him placed there.

If you've made it this far (mileage may vary state to state),
an IEP is not an agreement, they're guidelines to your son's
education. If you don't like the one you have, start a new one.
Don't agree to put anything in it you don't want, and when you're
done, don't sign it.

If you want to keep the one have, check how it's worded. If
they've signed an IEP that says Alex should have an aide, I'd
start finding out what the appeal process is. They'll have a
hard time explaining why they agreed he needed it and then
changed their minds. If you can get ANY documentation from
doctors, therapists, etc. stating your son's needs, get it and
save it. Find out if there are any other options for Alex's
schooling. We had to fight just to see the place Isaac's in now.

I'm rambling (it's late). If you have any questions, email me or
just post to the mailing list. I don't think there's enough
discussion of the "system" in this group.

Bill Duncan

P.S. You can't fight constantly. Several times we let Isaac "cruise"
for awhile because we just didn't have any fight left in us. But
we kept coming back and finally got what we wanted (for now).
Newsgroups: bit.listserv.autism
From: debg@uxa.cso.uiuc.edu (ginsberg deborah)
Subject: highschool
Organization: University of Illinois at Urbana
Date: Sat, 7 Nov 1992 06:15:45 GMT


Actually, for my sister Dana, highschool was one of her easier times (I
think).  She made a couple of really good friends and had a few really 
great teachers.
At the same time, however, some of her more stressful times came as the
result of not the other kids (who had mostly outgrown mean teasing) but
certain teachers.  I remember hearing stories, not from Dana, but from
other students who had been in her classes, about one teacher yelling at her
when she became apprehensive, and another constantly teasing her unmercifly.
That really made me mad when I heard about it.
Even today, now that she is in college, her worst confronations come from a
professor who is constantly trying to belittle her achievements, saying she
is incapable of doing her work (despite that she has been ont he Dean's 
list for 6 semesters) and that she should not be a psychology major.  Dana
is now very apprehensive about a class she must take w/ this man next semester
to graduate, and unfortunatly, when she gets apprehensive, her behavior 
worsens.  Dana has now been worried about this for several months.  The rest
of her college think she is wonderful and loves her very much, but Dana's
autism causes her to focus on this one negative aspect to the extent she
cannot appreciate the positve as well as she should.

(more stuff about frustrating schools)
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Apparently-To: XLCHC@UCSD.BITNET
Newsgroups: bit.listserv.autism
Date:         Fri, 13 Nov 1992 13:33:11 EST
              <AUTISM@SJUVM.BITNET>
Comments:     Resent-From: Bob Zenhausern <DRZ@SJUVM.BITNET>
Comments:     Originally-From: IEQ2CNG@UCLAMVS.BITNET
From:         Bob Zenhausern <DRZ@SJUVM.BITNET>

Is this of interest?

----------------------------Original message----------------------------
Date:    Wed, 11 Nov 92 08:50 PST
To:      Lab Comp Hum Cog network             <xlchc@UCSD.BITNET>,
         xlit network                         <XLIT@UCSD.EDU>
From:    Claude Goldenberg (213) 825-0046     <IEQ2CNG@UCLAMVS.BITNET>
Subject: facilitated communication

Sometime ago there were questions raised on this network about facilitated
communication for autistic persons.  I've recently received
a couple of relevant references;  I don't know whether they've already
been passed on.  If so, apologies.  If not, I hope these are useful
to whomever was requesting info.

D. Biklen et al "I'm not autistic on the typewriter."
Disabilities, Handicap & Society, vol 6,no. 3, 1991  (pp.161-180;
pretty dramatic account of the use and effects--presumably--of fc)

D. Biklen & A. Schubert  "New words:  The communication of students with
autism."  Remedial and Special Education, vol. 12, issue 6, 1991 (pp. 46-57)

Claude Goldenberg
UCLA
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Newsgroups: bit.listserv.autism
Date:         Fri, 6 Nov 1992 08:50:20 EST
              <AUTISM@SJUVM.BITNET>
From:         RJKOPP@SUVM.BITNET
Subject:      Re: Alex at kindergarten

Lisa,
   You recommended that when Dan gets his aide that he insist they be
trained in Autism.  In our School District (Syracuse City in New York
State like Dan's) our Aides are required to have 6 credit hours of
College work, it doesn't have to be in Special Ed or even Education.
They may receive other training after they are hired (although I have
not found this information).  If they are I'm quite sure it probably
is a brief training (something like a workshop or seminar, If it's
more than that I would be surprised, someone please inform me if you
know otherwise.  Quite often it happens that the person may be studying
to become a teacher or be a teacher trying to get into a spot, but it
definitly is not always the case and is not required.  I have seen some
situations that I'm sure that this was not the case, and the aides were
clueless, relying on motherly instict or common sense, which can be OK
but alittle more is needed.
   I would be interested in knowing if this is a Statewide policy, The
State Law certainly can't be any more help than that, otherwise Syracuse
couldn't use the above as their policy.  I also am wondering what the
other States require in relation to training and what they do for additional
more specific training.

Thanks,
Ray Kopp
Syracuse, New York
Internet:rjkopp@mailbox.syr.edu
Bitnet:RJKOPP@SUVM.BITNET
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Date:         Thu, 12 Nov 1992 21:20:05 -0500
              <AUTISM@SJUVM.BITNET>
From:         FARBER_R@SPCVXA.BITNET
Subject:      Re: parent-teacher conference

Dear Dan & Nanette,
     First of all it sounds like you need a diagnosis immediately.
With an autistic diagnosis it would be difficult for the district
to dispute Alex's needs.The IEP is a legal document and should be
treated as such.If everyone signed off on it and an aide was part
of that plan they are in noncompliance if they do not give you
one.Take a lawyer to your next conference or the name of one.
School boards don't like to go to due process.I 'm sure you
have a copy of the law and what you're entitled to.
   It sounds like Alex can really benefit from his own trained
aide,especially during those unstructured times on the playground.
Being aware of his stengths is important.Anyone who knows anything
about autism knows skills are splintered and often have savant
skills in certain areas.
   I knew an autistic girl who was reading when she came to me
at the age of four,Math on the 3rd gr.level,at least, and had
a memory for birthdates,like you couldn't believe!!!
  I'm glad you didn't have to battle putting him in the fifth
grade!!!!It sounds like his teacher recognizes that his social
skills are more appropriate to his age and that's precisely
why he belongs in Kng. and why he needs a trained aide to
help him develop those skills.
The mentor sounds like a help but not what he's entitled to.
Stick to your guns...
     I used to wish I could be in Christine's head for just
5 minutes also... sometimes that in itself can help to
begin to help....
Keep us posted.I hope I didn't ramble,but I don't understand
why people can't do what's right.Naive?maybe but where
children are concerned I 'm tired of the politics...
Rosanne
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Date:         Wed, 4 Nov 1992 13:38:13 EST
              <AUTISM@SJUVM.BITNET>
From:         Daniel Mont <D6M@CORNELLA.BITNET>
Subject:      Alex at kindergarten

Nanette went and observed Alex at kindergarten today.  I am so angry
I can't stand it.

We were told that he was doing fine....much better.  And from their
point of view I think he is.  He is better "behaved" and causing fewer
problems.  But he is very disassociated from the other kids in his class.
At recess time, he spent the entire period pouring rocks through his
fingers.  Three children came over and asked him to play but he
just completely ignored them.  HOW LONG WILL THEY KEEP ASKING? This
is our moment of opportunity to help Alex get integrated with the
other children before he is labelled as a "weirdo" or "different"!
Our IEP said we should get an aide but our school psychologist says
Alex doesn't need one.  SHe says, "you have to convince me he needs one'
Well, we misinterperted out IEP.  We thought the wording "a program aide"
was nebulous enough that the school could define it any way
they wanted to (Alex does have teachers who aid him in out of classroom
time). But someone at the state level that we spoke with today
says the wording is actually specific enough for us to demand an
aide and claim that the aide was removed inappropriately.  We are
having a teacher conference on Monday.  That will be our last attempt
to request what Alex deserves.  I think Alex's teacher is
a good teacher and reasonable and I hope that it works.  If not we
will have to move into demand mode.  I am not good at that. I don't
like conflict, but we'll have to do it for Alex's sake.  We also
will get Alex's official diagnosis as autistic.  Our Special CHildren's
Center and the Devlopmental Center in Syracuse classified him as
autistic but our school system still calls him speech impaired.
They require a diagnosis from a medical doctor.  So it is off to
Syracuse! Hopefully, if they are forced to acknowledge Alex's
autism he will get better attention.

Right now there is NO attention being paid to his social development.
I feel like ranting and raving or crying or something. I just
can't take it.
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Date:         Thu, 5 Nov 1992 09:06:04 EST
              <AUTISM@SJUVM.BITNET>
From:         Lisa S Lewis <LISAS@PUCC.BITNET>
Subject:      Re: Alex at kindergarten

On Wed, 4 Nov 1992 13:38:13 EST Daniel Mont said:
>
>Our IEP said we should get an aide but our school psychologist says
>Alex doesn't need one.  SHe says, "you have to convince me he needs one'
>Well, we misinterperted out IEP.  We thought the wording "a program aide"
>was nebulous enough that the school could define it any way
>they wanted to (Alex does have teachers who aid him in out of classroom
>time). But someone at the state level that we spoke with today
>says the wording is actually specific enough for us to demand an
>aide and claim that the aide was removed inappropriately.  We are

Dan, if your IEP states that Alex needs an aide you do NOT have to convince
some school psychologist that he "needs one."  If it's in the IEP he is
entitled to one. If he is entitled to one and doesn't have one, it's time
for action, no matter how sick and tired of it you are.

You are absolutely right...the kids in Alex's class will give up on him
unless there is someone there to facilitate his inclusion.  And that would
just be a crime.

>...  If not we
>will have to move into demand mode.  I am not good at that. I don't
>like conflict, but we'll have to do it for Alex's sake.  We also
>will get Alex's official diagnosis as autistic.  Our Special CHildren's
>Center and the Devlopmental Center in Syracuse classified him as
>autistic but our school system still calls him speech impaired.

Personally, I don't think you should wait to move into "demand" mode.  Being
demanding for the sake of your child doesn't mean being nasty or rude, just
insistent.  I know it's harder for some people than others (fortunately,
I was *born* demanding) but you HAVE to do it. Be sure that you know all
your legal rights.  Does NY have an advocacy organization? If so, call them!

>Right now there is NO attention being paid to his social development.

This is, as you know absolutely critical.  From what you've told all of us on
the list, it is obvious that Alex  is a very bright little boy.  He's
clearly performing well above age level academically. But socially they're
losing him.  Perhaps when you get the diagnosis confirmed (and in writing)
you will be able to better press the point that social deficits are a serious
component of autism that need to be addressed when the child is as young as
possible.

One last thing...when you're hammering this out at the conference, be sure
to insist that the aide be TRAINED in autism, and that his/her perfor-
mance be reviewed periodically. And get it in writing.

Let us all know how it's going.

Lisa
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From: MS3Y@CORNELLA.BITNET (Jean)
Newsgroups: bit.listserv.autism
Subject: Re: parent-teacher conference
Date: 12 Nov 92 18:18:24 GMT
              <AUTISM@SJUVM.BITNET>
Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU

Dan and Nanette --
When Jeff made his first visit to the autism specialist in Syracuse, the
final point that the doctor made -- and he made it very strongly -- was that
a bright and mildly autistic child like Jeff would meet his greatest problems
from adults who would regard him as an eccentric genius.  What a dreadful
misunderstanding that is!  We have seen plenty of it from well-intentioned
family members who would dearly love to have another precocious wonder child
among the grandchildren to boast about, rather than a family member carrying
the so-called stigma of special education. Your school's psychologist's
motivation is no doubt different, but the outcome is the same -- a label of
"eccentric genius" removes all responsibility from the one who assigns it.
Since Alex will probably see the same specialist as Jeff did, you'll have a
great opportunity to have the full force of that respected opinion put down
in writing.
    Good luck with the Monday conference - the mentor program sounds like a
practical fallback position if the aide proves to be impossible to obtain.
Cheers -- Jean
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Date:         Fri, 6 Nov 1992 06:01:04 EST
              <AUTISM@SJUVM.BITNET>
From:         Anne Pemberton <apembert@VDOE386.VAK12ED.EDU>
Subject:      Re: Alex at kindergarten
              "@pucc.princeton.edu:AUTISM@sjuvm.bitnet" at Nov 6, 92 6:13 am

Since I've been at Nottoway we instituted MANDATORY attendence
of ALL HS LD kids at their IEP meetings. In addition to making
the student a part of the process instead of the problem, it
has also increased the parent participation in IEP's. In the
past few years we've begun including the EMR students in the
IEP meetings but it hasn't had as much of an effect either on
the students' involvement or increasing parent participating as
it did with the LD population. I would imagine it would be far
more successful with the higher functioning autistic children
than with the lower.
Anne Pemberton
From: FARBER_R@SPCVXA.BITNET
Newsgroups: bit.listserv.autism
Subject: Re: Alex at kindergarten
Date: 5 Nov 92 21:26:12 GMT
              <AUTISM@SJUVM.BITNET>
Organization: St. Peter's College, US
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Dan,
  Listen to Lisa.Her advice is excellent.Dominick's mother
practically wrote his IEP.Our district was opening an autistic
class and she wanted to make sure he received everything in that
class that he would in a private special school.A trained aid
was one of them.The district sentthe aide to a nearby training
facility and the child study team and Dom's mom monitors her
performance.
Rosanne
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Date:         Wed, 4 Nov 1992 19:37:11 EST
              <AUTISM@SJUVM.BITNET>
From:         Anne Pemberton <apembert@VDOE386.VAK12ED.EDU>
Subject:      Re: Alex at kindergarten
              at Nov 4, 92 12:24 pm

Dan, Perhaps one way you can demonstrate to the school
psychologist how important an aide is for Alex is for you or
your wife to go to the school (daily or as often as possible)
and act as an aide for your son, esp on the playground. Not a
apermanant solution, but perhaps one that will both relieve
your frustration, and make your point in a very LOUD
voice! Also, it won't let Alex fall thru the cracks while you
and the system are disagreeing.

--
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
*                                                                   *
*    Anne L. Pemberton              apembert@ncps.vak12ed.edu       *
*    Nottoway High School           apembert@vdoe386.vak12ed.edu    *
*    Nottoway VA                    notthigh@ruby.vcu.edu           *
*                                                                   *
*           *       *       *       *       *       *               *
*                                                                   *
*   "One of the most spectacular privileges of intellectuals is     *
*    that they are free to demonstrate scandalous stupidity with-   *
*    out ever jeopardizing their reputations"   ---   Eric Hoffer   *
*                                                                   *
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
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Newsgroups: bit.listserv.autism
Date:         Tue, 10 Nov 1992 16:06:45 EST
              <AUTISM@SJUVM.BITNET>
From:         "Jean B. Hunter" <MS3Y@CORNELLA.BITNET>
Subject:      Re: Auditory Integration Training

Hi Ray - Recently I got a 10-page review of auditory training from an
organization in PA:  ASAP  (Autism Support and Advocacy in Pennsylvania)
which I thought was very well done.  You can get a copy by writing to
them at:  ASAP, 243 Lenoir Avenue, Wayne, PA  19087. Send $2.00 to cover
photocopy/mailing costs.  I saw some more of their literature recently at a
short course for parents and professionals interested in autism - the same
course Dan Mont referred to recently.  ASAP is a grass roots movement which
involves several autistic adults and teenagers as well as parents and
professionals.  They are evidently planning to put out reports on other
therapies as well.
   If you have access to Bernard Rimland's newsletter, Autism Research Review
International, you may find some information there too.  Although Rimland is
enthusiastic about vitamin therapies and dimethyl glycine, he seems to be
reserving judgement on auditory training at this point (and is quite an f/c
skeptic!)
   I am not planning to try out auditory training on my son because I haven't
noticed any indication that he has auditory sensitivities.  Cheers, Jean
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Newsgroups: bit.listserv.autism
Date:         Fri, 6 Nov 1992 09:29:25 EST
              <AUTISM@SJUVM.BITNET>
From:         Daniel Mont <D6M@CORNELLA.BITNET>

Wow! Thanks for all the support and advice.  In addition to the publicly
posted messages I received about a dozen sent via private E-mail.  I
don't have time to respond to each of you individually so please accept
my collective gratitude.  I'll be sure to keep you posted.

By the way, I recently heard of a new book written by an autistic women
called "Nobody Nowhere" (An Australian, Carolyn!). Her name is Donna
Williams. Has anybody read that book?  The good news is that she is
working on a sequel with the much more encouraging title of
"Somebody Somewhere"

I'd like to report one more incident that while somewhat negative also
has some seeds for hope.  The bus driver was yelling at Alex
for some reason (that we still do not know) and Alex ended up crying face down
on the bus floor, refusing to get up.  The good news is the way we found out
about this.  The older kids (4th and 5th graders) on the bus reported this
to the Principal who immediately contacted us and the bus dispatcher.
The older kids said they would look out for Alex and try to stick up
for him and report any further incidents to our principal.  They told her
that they really like Alex.  They said, "he's so smart. he's smarter than
all of us"  but since Alex doesn't *know* he is smart he has no
arrogance or obnoxiousness about it.  I think they find that endearing.
Anyway, it seems his most positive social interactions occur on
the bus. That is a welcome surprise!
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