Monday, October 3, 2005

Leveling the playing Field

Why is it that when you have a visible disability, no one questions it. Accommodations are made and help is freely given. But an invisible disability that is so devastating to some that they choose to end their life, doesn’t rate a passing thought. Even the word of professionals is questioned if the disability is hard to understand.

ADHD has long been recognized in children as a disability and learning disorder, but it seems that if the child doesn’t bounce off the wall and suffers more from inattention and disorganization, then he isn’t considered to have a problem. Add the stress of the “responsibility system to Aspergers and BPD and you can imagine how life was at our house.

When his doctors and I asked for accommodations for Andy at school, we were told it wasn’t fair to the other kids. Wait a minute, no one says "it isn’t fair" for the kid with a physical disability to be excused from running laps. Some schools even ban peanut butter from the whole building when one child has a severe allergy. How could our requests bother the other kids.

He was allowed to have extra time for standardized tests and that was never questioned. We didn’t even ask for that, the school did. Standardized tests it seems also rank the school so it was to their advantage for him to do well.

Finally one great lady said, that what we were doing was just leveling the playing field. The other kids weren’t doing 6 hours of homework each night, they didn’t have to bring home every book in their desks to make sure they didn’t forget one. These things weren’t going to increase his already high grades, they were just going to decrease his stress level. These were people who said they really liked Andy. Was this more about me? I couldn’t even think that. Why would someone hurt an innocent kid like this It was like pulling teeth to get anything agreed on Even then All of the teachers didn’t follow the plan. But it was a start. And I wasn’t done yet.

Things went from bad to worse. He was bullied on the playground, with little consequences to the star soccer player.

When Andy asked me to give one of my talks, it was OK'd initially. Then I got a call one night from Muffy (Ok her name wasn't Muffy) the school psychologist, who had the audacity to ask me if the kids had a formal diagnosis . Emphasis was hers. What did she think I did, pull it out of the Readers Digest? Did she want to see my medical bills? She went on to tell me how rare AS is Wrong!! One in 166 kids is on the autism spectrum. She thought we shouldn't be so open about our diagnosis and that taking to his class would embarrass and ostracize him. Heck the thing was his idea. What , should we go in the closet? I swear if she said one more time that she was "the mental health professional", as if that made everything she said true, I thought I would lose it.

It became clear that this was the principle way of backing out of her permission without having to talk to me herself. What a coward. Three days later I pulled the kids out of that school.

To be continued.........

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