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View Diary: Autism, Americans With Disabilities Act & Tom Harkin (23 comments)

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  •  Thank you, Senator Tom Harkin. (5+ / 0-)

    I very much appreciate those who went before us, to make the progress that was made.   I am grateful for all the kids who are helped.  

    There seems to be a gap.   The kids who are profoundly disabled clearly require that the school accept that some things are going to different, and that seems to make it possible to work out something.  

    The kids who are nearly normal, almost what the school wants them to be, are much more difficult.   The schools keep trying to shove them that little extra bit, trying to force them into the slot that has been assigned for them, caring very little for how much damage they do to a child trying to do that.

    I wish it was enough, but it wasn't.  We are no longer attending the traditional public school.  They were unable, despite their good intentions, to either understand my daughter's disabilities nor to accomodate them.  

    In fact, at one point, the principal turned to me and actually said to me, "Help me understand."   I talked to him about it, brought literature, and still, he was unable to grasp it.    It's no surprise.   It takes parents and kids many years to understand the nature of a child's disability.   ESchool officials take a ten minute overview and decide that they know what's best.  Even members of my own extended family who don't spend as much time with our child still doubt the extent of our daughter's disability.  She looks so normal.

    The other thing the principal said to me, was, "Here is what we are going to do."  

    Not, "What do you need?"

    But, "I don't understand."    And, "Here's what we are going to do."   How can you decide what needs to be done, when you don't understand?    The answer is, of course, you can't.

    There is still too much power in the hands of school officials and doctors, and not enough options and resources in the hands of parents.    With enough options and the proper resources, I have learned, many  parents don't even need an IEP, even for a very disabling condition.  

    The schools don't provide an appropriate learning environment for many disabled kids.  The environment is overly-illuminated, noisy, and crowded, resulting in painful jostling.   Their only "accomodation" for kids with sensory sensitivity sydrome, is to subject them to this torture for less hours in a day.   But, for a perfectly intelligent child, it is not enough education, and too much sensory stimulation.  Where is the "accomodation"?

    Our military uses light and sound as a method of torture, and that is what our schools are doing to kids with sensory sensitivities.    What is a bit irritating to a normal person, is an assault to kids with sensory sensitivies.

    And, it makes we wonder.   Perhaps, all this sensory stimulation might not even be so good for the "normal" students.   Perhaps it is contributing to those stress disorders that are plaguing our kids.  The depression, cutting, drugs and school shootings.   Perhaps, a quieter, more relaxing environment in which to work and study and spend eight hours a day might make a difference for many of these sensitive kids.   More natural daylight, and less flourescents.  More noise baffles.   More opportunities for at least partial privacy.   Staggered class changes so that changing classes is not an exercise in attempting to avoid being trampled.  

    Something to think about.

    I am grateful for what has been accomplished, but, for us, it wasn't enough.  

    Thank you, Senator Tom Harkin.  At least you tried.

    And, thank you, Charter Schools.   Because, that is where you can find us refugees from a failed system.  Kids who have been bullied.  Kids with attention deficit disorder.  Kids with Central Sensitivity Sydrome.  You can find us in  the Charter Virtual School.   That is our "accomodation".  You can complain that it is diverting money from the public school system, or that the education we get is not as good, but what were our options? We didn't want to leave.  We were forced out.   The only place for us, before, has always been home school.   At least, now we have virtual schools to help carry the load a bit.  

    Meanwhile, we are grateful for our escape. We no longer have plead with doctors and school officials, while being ignored and told in a patronizing tone about what's "in our child's best interests".   After a couple years of that, we felt like refugees from a fascist state.   Now, we only go to the doctor when the doctor can help us, medically.   We don't go every six weeks, paying $550 for an office visit, just to get a form signed that the school requires.   We don't get notes from the State threatening us because our child has absences, despite the fact that we have documented her chronic incurable condition.   It doesn't feel like an accomodation.  It feels like prison.

    By the way, my "healthy" child is still in public school.  I have nothing against public school, in general.   I love our public school, and only left because no matter how afraid we were to leave that safety net, the way we had always done things, we were forced to leave.   We tried the accomodations, and they didn't work.  So, what were we to do?   Where were we to go?  

    I have had to devote a great deal to supporting my daughter's "do-it-yourself" education, relying on my own technical and professional background.   I often wonder about the other parents in this situation, who don't have the same resources, who are eventually forced out of public school by overly-aggressive misguided helpfulness which is not at all helpful (detrimental, in fact) and way too aggressive.

    I wonder if those kids ever do get an education?

    Sorry for the rant.   For anyone who thought the ADA, and IDEA and Section 504 had taken care of the problem -- it is a wonderful start, but the job is not done.

    •  I'm so sorry all that you, your daughter and your (5+ / 0-)

      family has endured.  My nephew has high functioning autism and has so many challenges that my daughter doesn't face.  It's not easy for anyone.  I agree with you that there still is a great deal wrong with the system in serving the needs of people living with autism and so much more to do.  

      There is no cookie cutter answer to any of this.  What works for one family doesn't work for another.  Your rant is justified.  

      You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. ~ Eleanor Roosevelt

      by Foundmyvoice on Sun Jan 27, 2013 at 04:19:54 PM PST

      [ Parent ]

    •  It's even worse when you're in the working world. (7+ / 0-)

      I'm an Asperger's sufferer that looks and acts almost completely normal, thanks to more then 20 years of therapy and other assistance.  But it's slowly destroying my career as a bioscientist.  The ADA is a good thing when you've already been hired, but in a field where there are several hundred applications for every decent job, it's so easy to sabotage someone's advance or hiring, and the ADA pretty much doesn't function at all BEFORE you get hired.

      The IDEA act actually has quite a few more teeth in it then the ADA, too.  I've seen employers routinely flaunt it with no consequences, even with folks with OBVIOUS disabilities.

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