Monday, September 13, 2004

Eli and autism

It took a while before I was ready to acknowledge that Eli was autistic. Part of it was denial, of course. Part of it is that he's not classically on the autism spectrum. He makes eye contact. He cuddles. He says, "I love you." He doesn't engage in self-injury. I was convinced it was something else - Sensory integration dysfunction. He was just a late-talking child. But it wasn't, and it isn't - my son is on the autism spectrum, diagnosed with PDD-NOS, Pervasive developmental disorder not otherwise specified - possibly the stupidest disorder ever described. It means that my son has some autism related disorder that no one can identify.

Eric and I have not, so far, been the kind of parents of disabled children who devote their whole existence to giving their child the best future, and I wonder if that is a terrible mistake. We have not, for example, seriously contemplated working with Eli after school so that he could get a whole ABA program - 40 hours a week of intensive training. We make sure he receives speech and OT, we advocate for him, but we don't spend hours daily in his classroom. Unlike the mother of a friend of Eli's, I am not going back to school to get a special education degree.

Some of the reasons that we are not devoting ourselves to this are philosophical - we feel like Eli has managed to do quite well at becoming functional at home, and that the best things we can do for him are allow him as normal and functional a childhood as possible. So instead of doing an extra 2 hours of ABA work when he gets home, he goes out and plays, he swings, he runs, we listen to music, play with the dog, feed the chickens, spend time with other kids. Maybe this is the wrong approach - I don't know. But it seems like we want him desperately to have a childhood.

But part of the problem is probably something else - to do the kind of intensive training that Eli would need would require that Eric and I be his teachers, enforcers, the dispassionate observers who require constant repetition, and that's a hard role for me to take. Eli hates showing what he knows, and getting him to work is a constant battle. I don't want him to battle with his parents all the time - I want him to get comfort and nurturance here, not conflict.

Every time I read a story about some tireless parents who made their child normal by working 8 hours a day with them, I feel terribly ashamed that I do not wish to and do do that. I want my child to be normal, and I ping pong back and forth between confidence that things will work out all right whether he is or not and terror that Eric and I are limiting him, damaging him. I don't know if I am doing the right thing or not, if I am failing my child or giving him a childhood.



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