Saturday, July 01, 2006

Once Upon A Time, Before Autism Came Into My Life

I have picked up a really odd habit. I read stories about other people finding out their children are autistic.

I'm sure my therapist would say I'm in search connection, understanding, empathy, whatever. That's not the point- is it?

Usually when I read them, I cry. I do that a lot. I've ot some friends who will be surprised; I have other friends who will be thinking "again? That's not news." But there is something about knowing someone else had the sudden, wrenching, horrible moment I had when the word "autism" first fell from someone's lips, and they were talking about MY son. MY baby. MY sweet little darling boy who loved to give me a kiss, loved to tickle his baby brother's toes, loved cottage cheese with lima beans, loved knocking over block towers, loved getting raspberries on his tummy. I cannot tell you what a strange, other-worldly experience that is. It takes a while for the shock to wave off, and to realize once again that nothing has really changed, you're getting the help your baby needs instead of gliding about in blissful ignorance. Joey is still Joey. He didn't change. I did.

The pain is actually useful for me. Its a reminder that there is work to be done. It can be very easy to slip back into teh habits of ignorance. Before we knew, we could easily "read" Joey, and know what he wanted. We could attribute strange behavior to eccentricity of childhood. But then there's that pain, that flash of agony that says "move your butt, or he won't have a chance at a normal life. Move your butt, and at least he'll have a shot at independence."

Joey is considered mildly autistic. I can't imagine what someone with a severely austistic child feels like, or how they cope with that kind of devastation. If my moving my butt is just to give Joey a _shot_ at normal living... and remember, he may not, even as mild as he is, ever live independently. If I stall and don't do what is needful, he won't even have a chance at it- if I do everything right, he still may not ever live an independent life. Every minute counts. It can be very hard to try to get other people to understand that- even people who are supposed to understand and be helping, like school folks, therapists, family. Every minute counts.

So i seem to seek out these "once upon a time" punches in the stomach. Or are they kicks in the tuckus?

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