Newsgroups: bit.listserv.autism
Date:         Fri, 6 Nov 1992 09:24:08 EST
              <AUTISM@SJUVM.BITNET>
From:         RJKOPP@SUVM.BITNET
Subject:      Re: Alex at kindergarten

I agree I would like to see more discussion of schooling issues, such
as school district labelling, enforcement of IEPs, Problem Determination,
and current laws and loopholes, comparison of different States procedures
on all these issues and how it compares or does not compare to Federal
Mandate.  This is also an issue that I would like to see discussed with
anyone with special needs children, not just autistics.  The autistic
labelling/services issue is a strong one as it seems that goals for autistics
can and should be much different than some other labels, but I thing the
root of the matter deals with the general procedure and guidelines and
how School Districts use these and sometimes manipulate them to their
purposes.

In the matter of Dan and Alex.  I know I come from a past history that was
difficult for us and probably much different than many, but I think my
experiences should be applied to these matters and taken as a consideration.
I don't think everyone would run into the same difficulties, but my experiences
should also hopefully show that you shouldn't make rash decisions, even when
you feel that you need to do something as soon as possible.

My daughter came from a preschool that was based on integration and based on
a model of a program that despite the fact it wasn't solely geared to
autistics, wound up specializing in that type of disability (or whatever
you wish to call it.)  At the time Shawna's traits were not purly autistic
in appearance.  We saw many similarities and often thought of how similar
in some ways she was but different in others she was.  This school did not
beleive at the time that she was autistic, I beleive she was but that many
symptoms or traits were hidden by other difficulties she had.  Whatever
the case she had been labelled multiply handicapped by the pre-school
phychologist, the handicaps were not listed within the label (different
than the School District does).  The issue to me was that she had been
at this preschool for 3 years and had made very strong gains.  Many of the
gains were physical gains, at 2 years of age she was not yet able to walk,
couldn't always stay sitting very long and had little communication (no
words, just certain sounds that indicated pleasure or displeasure at things).
When she left the school she was walking, had a very good start on toileting,
making it about 80% of the time, (which seemed to be a big issue in the
district later), and had started to use words.   When we went to the first
CSE for placement we sought to keep the program as similar as possible,
She had demonstrated a strong ability to learn from her peers, moreso than
from the teachers alone, so integration was an important issue to us.  The
preschool also was very emphatic on this issue (of course unfortunatly it
was something they always asked for).  The School District decided on a
label of Mentally Retarded Moderate and decided a self-contained class-room.
We were devastated, and argued the decision with them then.  They wouldn't
back down, so we told them that we will be appealing.  We weren't nasty,
very hurt, but I don't think that nasty.  After we visited the class that
Shawna was assigned to we were devastated more, in fact we refused to send
her.  The class I would say seemed like many emotionally disturbed children,
maybe a couple of Down's kids.  Absolutly no peer models for any of the
kids.  One of the girls from my daughters school always was very stressed
and yet at the pre-school within about 6 months she was participating in
classes at the pre-school and quite under control.  At the new classroom,
she was out of control.  She was being held most of the time on someones
lap and received very little direction.  A definite throw back to 3 years
previous.  The teacher spent 2 hours talking to us, without a glance at the
rest of the class.  The aides that were trying to handle the class appeared
very poorly trained or able to direct the kids.  Unbeleivable.
  Now please don't everyone that supports the self-contained environment
jump on me.  Granted I don't like self-contained, but 3 other classses my
daughter would be in after were self-contained and 2 of the 3 were quite
good.  So I wasn't upset at the self-contained issue as much as the placement
and what the other kids were placed at.
  The next process in our district was to go one CSE higher in the District
level, they call it a Sub-District CSE and the District CSE.  We went to
talk to the Director of Special Ed, who also would head the District CSE.
He wouldn't discuss much with us, because he said he didn't want to "jeapordize
his impartial view".  If he had discussed things with us, we could have
worked on something alittle and at least had some ideas of what to expect.
His unwillingness to talk further with us, really made us continue with
the appeal process.  It was clear that already we were on the road to a long
battle that would not be settled easily.
   This is the issue that I think is important to Dan and other parents.
First even if you blow up and scream at the CSE, it's not something that
hasn't happened before, and yet some of those people manage to get what they
want.  We tried to be polite and not to loose our control completely, we
were pretty upset, but like I said others had been much worse.  But I always
wonder what created such a war.  Our preschool was a very concerned school
we had quite a staff with us when we went to CSE, I think this had a negative
effect, although, due to the number of services Shawna was receiving it was
necessary, but comments were made about the numbers, very politly but very
soon I got the feeling that they thought we were trying to outnumber them.
If they really looked at the services they should have been able to figure it
out but they didn't.  We had no support within the School District, that
doesn't help.  But nothing was given to us or even shown as a possibility
without going to a CSE or Appeal process.
   The point here is that you do have to be careful about what you say and
what you do, and even then you may run into a brick wall.  Dan has a teacher
that is at least acting supportive, that may be a good asset and a good
start to fixing his situation.  Someone mentioned that it's on the IEP
so you can just demand it, that is true, but if the district refuses your
recourse is to take them to committee for enforcement of the IEP.  That is
an adversarial position and starts building the wall between you.  It may
be necessary, but if you start by stating this you may help them build that
brick wall sooner.   If you go back to CSE over it, I am not sure but there
may be the possibility to re-open the issue and ultimatly loose the aide
anyway.  You probably would want to check on this with a legal aide first,
just be warned, they would love to just go to court or the legal process
over this, so they are likely to advocate that, which in turn turns it
immediatly into an adversarial position.  As soon as it becomes adversarial
and if legal assistance is brought into it, they are going to consult their
lawyers and their lawyers are going to advise them not to talk to you!
Then you are bound by the legal process and your road becomes much tougher.
In the appeal process in NY I don't think you are going to get very far
until you reach a court case.  (referring to the legal process).  Up to that
level you are dealing with people that are in some way connected to the
School System. Even the so called Impartial Hearing Officer is hired by the
District and in our District they often had the same one and he had a very
well known record among those that deal with the legal process in upholding
the Districts side to things.  In the legal process all of the officials
that are in the District wind up challenging your professionals.  You
wind up with your phychologist vs the School Phychologist, Your doctors
opinions versus the School's doctor, Your teachers vs. their teachers,
and so on.  Also they can afford much more expensive and classy lawyers
than you can!  And in the court room this has quite an effect.

One other thing I should say, once my daughter was diagnosed by a recognized
specialist as Autistic, the district placed her into the autistic program
where she now is progressing nicely and doing some real neat work.  But
without the autistic label she would still have been in a self-contained
setting, being taught as a mentally retarded student, and in that, in my
opinion not being given the opportunity to prove herself.


Some of the above issues are issues that I hope could someday get addressed
and that things would change.  Unfortunatly I think that could take a long
time and much effort, but I think it needs doing.  The current process
really does favor the School District and much of the parts of the law,
such as least restrictive environment are not spelled out as much as they
need to be and therefore become a battle over who is qualified to say what
is and isn't more restrictive in the case of a particular child.

P.S.  I'm sorry this post is so long, but I felt that some history was needed
so that you know I'm not just some whiny parent that never thinks what is
given my child is enough.  Also I think these issues are of paramount
importance and need work.

I would be interested in hearing more on here about other peoples opinions
and experiences.

Thanks,
Ray Kopp