Wednesday, March 17, 2010

Uncle Fester

I've heard some feedback about my three minutes of fame in front of the local school system's Board of Education a couple of weeks ago.  It seems that current staff at my son's former elementary school have their noses out of joint.  (For the expanded version of what I really said that night, go here.)  Sigh...


I've said before and I'll state it here again:  I believe that every member of my son's school team was a kind and caring person.  But I know that there is systemic ignorance within our county school system about what it means to be a person with Asperger's.  (If you believe you're right, why would you contemplate changing?)  And while there have been recent improvements, those bringing about the positive changes are spread too thin.  Additionally, one person on my son's educational team at the time, a person who knowingly and deliberately blocked his success, is still in a position of power within the school system and continues to cause problems for other children with spectrum disorders.

I've said before and I'll state it here again:  My child is not entitled to the best education.  Instead, my child is entitled to a free, appropriate, public education (FAPE).  Try stomaching that as a parent of a neurotypical child.  Now try stomaching it when your child has special needs.  My problem is that the school system tells me that my child can have services and interventions that are availableAvailable does not automatically mean appropriate.  The laws governing special education say that my child should get what he needs; they do not say the my child can have what he needs as long as it's already available.  But this is school culture, so I work to make available that which my child needs.  (If Mohammed won't go to the mountain, we'll just bring the mountain to Mohammed.)

I've said before and I'll state it here again:  There have been many times in my son's school life that we've questioned whether he was receiving any part of his FAPE.  Free?  We've paid to educate ourselves.  We've paid for doctor's recommendations.  We've paid thousands of dollars for an advocate.  We've paid the same hourly rate for the advocate's driving time.  We've paid for books to loan to staff.  We've paid for books to give to staff.  We've paid for equipment for my son to use in school.  We've paid for private therapies because school wouldn't provide them.  (Try stomaching that he can have services at school if and only if they benefit him educationally.  If they're available.  Then listen to all the reasons other people at the table believe he doesn't need them.)

Appropriate?  I could list out everything that was appropriate in about five bullet points.  See my State Complaint from 4th grade for everything that wasn't appropriate.  It might be more useful to say that had school staff and administration truthfully answered the question,  "Is what you're doing working?" I wouldn't be writing this paragraph now.  Had they understood my son as a child with Asperger's and that his behaviors were consistent with a diagnosis of Asperger's, they would have changed what they were doing in order to reach him.  They didn't.  Most still don't.  That's why I coordinate the Autism Spectrum Support Group of Southern Maryland, why I have in my son's IEP that staff will receive training from an expert in Asperger's, why I sit on the Citizen's Advisory Committee for Special Education...

Education?  What did he learn in all his elementary school years?  Of course he learned the academic content; give it to him and he absorbs it.  But that's not what children with Asperger's need to learn.  Their impairments are in the social arena, in the use of pragmatic language, in executive functioning.  They need training in these critical skills for being successful in school, on the job, in relationships -- in life.  In fact what my son learned was how to get other people to do undesired actions for him.  What he learned was that it's acceptable to be so little challenged academically that little effort gets good grades.

Public?  Yep.  It was public.  Over the walkie-talkies, down the hallways public.  Though it was rarely communicated to me.

I've said before and I'll state it here again:  Children with Asperger's often need to be reached differently.  Just as you wouldn't hand a child who is blind a piece of print material and say, "You're responsible for this information," you don't teach a child with Asperger's in ways that he can't understand.  My child is at home; ring the bell and see if he answers.  If he doesn't, go around back and knock.  He's likely to let you in.  However, if you don't get an answer, please climb in the window.  He's worth reaching.

I've said before and I'll state it here again:  School is a community, and I'm not a member of it.

Imagine five years (eight years if you count the time at the previous elementary school) of beating your head against the wall trying to get your child what you knew your child needed but never being successful.   Imagine that you're told repeatedly that the school team can "handle" your child with Asperger's, that they know what they're doing; then imagine getting called to come and pick him up because he's behaving badly or having his work sent home because he wouldn't do it.  Imagine that at the end of the day, you had to tell your child that you had done the best you could, and it wasn't enough.  Now read what I said to the Board of Education and tell me I'm out of line.

I'm not going to say "uncle," and I'm not going to let it fester.

1 comment:

Corrie Howe said...

Keep going every year. Think about the story of the boy and a starfish. Where thousands of starfish washed ashore in a storm. A little boy went through the beach and tossed one by one back into the waves. Someone said he couldn't make a difference and was wasting his time. He said, as he was throwing one back in, "I made a difference to this one." (Or something along these lines.)