Klarinet Archive - Posting 001174.txt from 2004/03

From: "Thomas" <thomas@-----.com>
Subj: [kl] Re: no child left behind
Date: Fri, 19 Mar 2004 22:57:13 -0500

Christy,
If there is no lobby for bipolar and other mental health issues, that is not
the fault of the autism lobby. And that does not mean that bipolar/mental
health issues do not deserve to fight for their rights, either. The autism
lobby started from a small group of parents, teachers, family members who
banded together to support their cause and find out what causes it. No one
is stopping the people concerned with your issues from organizing. Why
don't you look into it yourself? It sounds like you have a real problem in
Wisconsin - this would be my first priority, changing the system. Because
nothing gets done if the law is against you. My philosophy is if you have a
problem, and you don't DO anything about the problem, then you have no room
to complain if it gets no better, or gets no attention.

If you think you can't do it, think again. I was a big part of getting the
Pennsylvania MA law changed wherein children who receive Social Security are
not stripped of their MA cards. What was happening was that children who
had MA cards, and received Social Security (whether due to death, or
retirement benefit, of a parent) were losing them because the SS was being
considered as income. So in effect, some kids were losing a parent AND
their health insurance.....and the burden on the single or widowed parent
left was unconscionable.

FURTHERMORE, when these children turned 18, they were NOT entitled to
Medicaid, because they did not have the waivers from the MA card for their
disabilities. These children could be kids with Downs, low-functioning
autistics, kids with CP in wheelchairs - you name it. It didn't matter,
they couldn't get insurance. We were successful in getting this
overturned - and now SS is not considered income to disabled children who
already have the MA card. The next step is to have it not count for those
who NEED an MA card and don't have one. Their reason for not including
those kids? "Too much money."

I never said children with AS have high IQs. Someone else said that. You
said, about your own son, "However, he has been described as 'Asperger-like'
since he also has a rather high IQ and some of the traits." So in
essence, you are saying having a high IQ is Asperger-like.

I'm amazed to think you think that parents of autistics have it easy. At
least bipolar disorder can be controlled with meds. And at least your son
will (probably) live on his own someday. When your child has the label of
Autism, that child is in danger of being thrown to the dumping grounds. Our
county has a "special school" for those that the regular schools can't
handle. I fight Daily in order to see that he doesn't go there. My son has
a full-time aide in his classroom, because I insisted on it after I got his
eval. Which leads me to the next part....

As far as services go, the services fit the educational need. If you have
on paper what the child's needs are (which is why I took my son to the U of
Penn for the Dx and waited four years for that appointment) then you can Get
the services. So That is why you should take him someplace. It will Help
you. You can get the doctors to write what the boy needs into their eval.

I do understand the plight of parents with kids with disorders other than
autism, I do IEP and advocacy work on the side, and I would never think to
denigrate those parents by saying their problems were easier and that they
would not be "raked over the coals." My son got NOTHING from this school
district for 6 years. You have NO idea what parents of autistic kids go
through. You don't hear what happens to them because you don't run in the
same circles. Just because there is an autism lobby doesn't mean my kid
doesn't have a STIGMA - how ridiculous is that?

WAKE UP. I am NOT going to pity you because your child's disorder doesn't
get the recognition that my son's disorder gets. How ridiculous and petty
does that sound? That is what you are saying! MAKE something happen.
Get your kid re-evaluated with a detailed eval stating everything he needs
from school - MAKE them give him the services (in your home or whereever)
and MAKE them comply with FAPE. GET the services he needs. THEN get to
work and get with parents, and change the freaking laws so the next parents
don't have to fight so hard. That is what our lobby is doing now for our
grandkids' generation.

Lynn

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