Friday, April 06, 2012

High Expectations

I had 'em. I expected STX209 to really turn the boys' lives around. I expected earth-shattering new awareness and interests. I knew it wasn't a cure. But I expected more, I guess.

We have an appointment this afternoon with Dr. EBK in Chicago to review how it's going, and always before an appointment I spend a lot of time thinking about what I'm going to report.

They both are doing well in school, Zack even moreso than AJ. Zack concentrates and pays attention and usually is able to control his body so well at school. But then back at home, he really retreats into his own world of videos and the iPad. Neighborhood kids come over to play, and Zack couldn't care less. He wants to be left alone to snuggle in his favorite pink shirt and watch Super Why on as many screens as he can get (he's happiest if he's got it on the TV, the computer and the iPad at the same time).

AJ has a tougher time controlling himself at school. He will jump up and bolt from the room during circle time. He is whiny and unhappy often. At home, he's a little ball of sunshine. He's filled with joy when the kids come over. He could run around with Aliza and the kids from our street all day, and the kids are really friendly to him. It's absolutely thrilling to see.

He does get whiny and anxious at home too, though. He doesn't have much of an appetite, and the size difference between the boys is more and more apparent. Zack is a pretty good eater, and is strong and basically filled-out. AJ is skin and bones. Almost every meal, I have to encourage bite after bite. He doesn't consume near enough calories to keep up with his activity level.

Both of them still show quite a bit of anxiety. They both need a chewy in their mouths for a large part of the day, and they both do this nervous self-talk constantly.

I don't want to seem ungrateful for the opportunity. It's just that I thought we'd be past some of these things by now.

My parents recently returned from 12 weeks away at their place in Galveston. We all expected they'd see major changes in the boys' behaviors, having been away for so long, but my dad admits the changes are pretty subtle, if they exist at all.

I feel bad complaining about the lack of "WOW" we've experienced. I'm glad we took part in the trial. But I have to be truthful. I'm a little discouraged at our lack of progress.

(Trying to get to sleep last night.)

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