Saturday, July 07, 2007

The Other Child

I don't think about him much anymore, the other child, the one we thought we'd have, the almost ten-year-old who I imagine would right now be riding his skateboard up and down the sidewalk outside the house instead of the ten-year-old watching Elmo videos and flapping his arms excitedly. The one who would be bringing home math and social studies homework, instead of tracing the letters and coloring the balloons. The one who would be fighting with me about whether he was old enough to walk to Burger King with his friends instead of fighting with me about whether it's time to stop playing long enough to get a fresh diaper.

But if we'd had that child instead of the one we have, he would have started brushing aside my kisses a couple years ago, and would have long since outgrown sitting in my lap at bedtime and listening to a Thomas the Tank Engine story. He would probably no longer think that going to Grandma's house to swim was the coolest thing ever, or get excited about an airplane flying over. He'd probably no longer be happy to go to school, and anxious to show us his ability to recognize letters and numbers on signs.

I don't think about that other child much anymore.

When Sam was first born, and we knew there was Trouble, we got a lot of well-meant advice and platitudes meant to console. Everything from "I'm sure he'll be just fine in time," to "God must think you're very special people to give you this child to care for." Neither of which actually consoled. Nothing prepares you for a child with disabilities. The first and overriding emotion is one of being overwhelmed, "we can't possibly care for this child." But little by little (and in our case, with a lot of support and hand-holding from people who knew better) you get into the routines, you learn how to fight the insurance company to pay for all of the services they're supposed to but will initially deny, you learn about the services available, you learn how to handle an IEP, and you actually find ways to have a reasonably normal life. You find that--most of the time anyway--you can cope.

There are some concerns looming: we're going through some behavioral issues right now (hitting or yelling when frustrated) that we're working on but that could be serious as he gets bigger and hits adolescence (when the testosterone kicks in, dialing up the aggression), finding living arrangements for him as an adult where he will be well cared for, and setting up finances/trusts so that he will continue to be cared for once we're gone and won't be at the mercy of whatever form of "compassionate conservatism" is carrying the day. That last is the one that worries us the most.

But then, I imagine we'd be worrying about some of this even if he were the other child.


Blogger Maya's Granny said...

When the dreamed of child becomes the child with the disability, everything in your life changes. All parents look to the future with trepidation, but most of us can look forward to the day when our children no longer need us.

Do you read Angry Black Bitch? She is responsible for her autistic brother and sometimes talks about it.

12:43 PM  
Blogger Deja Pseu said...

I've read ABB periodically, but not consistently, and have missed her references to this. I'll have to pay more attention.

3:24 PM  
Blogger Linda Atkins said...

This is a lovely, poignant, loving post. I'm enjoying your blog!

1:46 PM  
Blogger Deja Pseu said...

Thanks, Linda!

2:03 PM  

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