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Joey Returns

Posted Nov 29 2008 12:21pm
The boy is back.

Joey is a sweetie, there is no getting around it. I missed his smile, and the tilt of his head, and the sparkle in his eye. Now he's back, and I just want to crawl into bed with him and squish him. But I won't, because if I wait a couple hours, he'll crawl into bed with us, and we can squish him. And we'll be warmer that way.

Joey has had a lot of anxiety lately. Although I can make some educated guesses as to some of the issues he's wrestling with, I do wish he could give me more clues. Last night, Andy was having his usual fuss about bedtime and bathtime and wanting to splash (with a very large pitcher), and I overheard this exchange:

"AAAAAAAAA!"
"Why are you screaming?"
"Because you are annoying me! I want it!"
"You get water all over the floor when you have this. Play with some of the other toys instead. Look, there's a bowl."
" AAAAAAAAAA!"
"You have a bowl to put water in. What's wrong?"
"I'm sad!"

Joey can't do that.

Often when we are headed into IEP meetings, I try to explain that there are things Andy can do that Joey still cannot do. Then they ask me what, and I find myself at a loss; because Joey is Joey, and although I know there is the skill gap, trying to come up with exactly what those skills are is daunting- I expect Joey to be Joey, and Andy to be Andy, and what does that mean exactly? I know there are deficits, but when I have my boys, I just don't think of them as deficient; pinpointing the disability is something I have to think hard to do. I get asked, "What do you want for Joey?" and my current answers seem meaningless in the context of an IEP. What does "I want him to be happy" really mean?

We're not to Christmas, but with the troubles we've been having this year- minor compared to previous years, because our caseworker totally rocks- I'm already getting ready for our second grade IEP. When I go in there to explain what Joey can and cannot do, I am going to print out this blog entry.

When Andy is feeling anxiety, he can tell us. Joey can't. The result is that Andy's acting out gets words, gets understanding, and gets fixed. You hand him his pitcher, or you explain to him that he won't be getting the pitcher, he should play with something else. When Joey is anxious, we become Sherlock Holmes, trying to uncover the clues, the trails, the sources of anxiety. Then we have to analyze those clues to try to discover the whodunnit problem that resulted in anxiety, and think of how it ought to be fixed.

I want Joey to be able to have more input into those solutions.


Now it is morning (I started the post last night), and the boys are off to their swimming lesson; the contrast between what Joey can and cannot do seems all the more strange to me. In the three short months Joey has been taking swimming lessons, he has learned to swim independently right across the pool. Ms. Heidi says he has a good, strong stroke. Maybe he'll be on a swim team when he gets older. Wouldn't that be awesome? We just need to get him to breathe properly (put his face in the water while he swims) and he'll be on his way. Not bad for six years old.

It seems strange to me that people would want this child closeted away. They can't see the wonderful things he can do, the wonderful, beautiful person he is, simply because he has trouble speaking. As he gets older, what roads will be blocked for him, not because he can't do the tasks, but because he can't put what he can do into words from his mouth? I wonder about kids who are completely non-verbal, the challenge of living in a world where speaking is considered a vital marker of intelligence. In fact, I think now the ability to see people and accept people for who they are is a far more important form of intelligence. To be able to look past what people cannot do, and appreciate what they can do. And perhaps that is a post for another day.

I miss Joey when he isn't here. I am so glad he has fun with Grandma. I am also glad to have him back.
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