Monday, September 13, 2010

Stupid Autism

My son was diagnosed with autism in 2000. He was a little over 3 years old.  The symptoms started (I thought) suddenly when he was 2.  I remember telling a friend it was like someone came in the middle of the night and switched my son with someone else's child.  He had been an exceedingly bright baby, early with all his milestones.  Then, after age 2, he stopped responding to his name and became inconsolable for the slightest reason.  Later he became barely verbal and when he was, he exhibited echolalia, repeating everything he heard.  A very brave daycare worker quietly slipped me a newspaper article on autism. She said, "I think you should read this."  (Bless her.  She knew I needed to know.)

Well, fast forward through preschool, grades 1, 2, 3 and onto 4th grade.  By this time my son and I had become used to the routine: play therapy with the local autism center, meds every morning, checklists, verbal cues and IEP meetings.  My son was (and is) a real trooper.  He had accepted life as it was up to this point.  But grade 4 was hard.  He had become more self-aware - something kids do much earlier, age 3 or so.  In 4th grade Wally started to realize he was different, and I had to finally sit him down and tell him why. 

It felt like blur, but I remember accentuating whatever was positive about it.  I also remember telling him that everything happens for a reason and maybe the reason for this was that he, a high functioning and now more verbal autistic boy, could help doctors understand the other kids with autism who couldn't speak.  He seemed to be comfortable with that.  He was a champion of sorts.  He had purpose.  He started helping the teachers with other children after that, so I know he was able to find some kind of coping strategy. 

And so we crossed the speed bump and kept going...until a day when something happened at school and he was sent home, suspended.  I don't remember what happened.  It doesn't matter now.  We know now that he was reacting negatively to recently prescribed meds.  My sweet, bright little guy was host to a battle of conflicting neurotransmitters.  Mother Theresa would have been suspended given what Wally had been processing.  Those 3 days of suspension we sat on my sister's patio, reviewing what school work we could so he wouldn't be too behind.  After a particularly difficult lesson he became exasperated.  He  threw stuff on the ground and shouted, "Stupid Autism!"  I didn't know what to say.  The exclamation was heartbreaking, funny, and oddly zen at the same time.  He never asked to have this.  No child asks for a disability.  But when that child is able to comprehend that they are different, through no fault of their own, and still persevere, how can you not marvel at that strength? 

Wally is now 14.  He's a high schooler.  High school!  He still has an IEP, but early meds (now non existent) and special education have paid off.  He has friends, tells jokes, gets A's in some classes, and struggles in others, just like other kids.  He still retains some odd features, mostly OCD and communication issues, but with counselling they are becoming slighter and slighter.   

I picked him up from school today and we went to the corner market where all the kids hang out after school.  When we left, someone called his name.  He said, "That's my friend, Ahmed!"  We walked a  little and the he said, "You know, mom? I think I'm gonna try and live here when I get older."  A wonderful demonstration of perceived acceptance and a big victory over stupid autism! 

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