12.30.2003

Revisions

I have changed the title of the blog. The "soon-to-be-not-autistic" part is out, because the more research I do and the older Leelo gets, the more it seems to me that I'll be allowed to pound my chest and yodel about recovery when and if it happens. Not before.

I'm not being a pessimist. He is acquiring more pronounced symptoms (e.g., spinning non-spinny items now, a classic affect) even as he learns new skills. If you talked with supervisor M or his therapists, they'd say I was nuts--he's doing so well in his therapy, consistent 80% success rates and mastery--but he is not able to generalize very well unless prompted, and even so is drifting away more and responding to us less.

It takes incredible energy and focus and energy to sustain interactions with him, I just can't do it all day long. I am not Catherine Maurice--I don't have the capacity to stay in his face, narrating his life and blocking all retreats. It is so much easier to let him trot off and amuse himself sometimes, but this is exactly what we're not supposed to do. Sigh. Seymour, on account of being the out-of-home wage earner, spends less time with the boy and gets frustrated with his behaviors even more easily than I do. After that Xmas week of no therapist or babysitter respite, we are both exhausted and feeling more down than ever.

And then there's Iz, sitting on the sidelines and watching her brother get oodles of attention while constantly being told "I can't do that right now, I'm busy with Leelo." No, she's not going to be bitter at all. Part of why I created those Xmas gifts for her, to show her that even though I'm busy a lot, I do think about her and love her and want to spend time with her, and know she's a wonderful little girl.

She's off school this week, and Leelo had two sessions with Therapist L, so I was able to spend some one-on-one time with her both yesterday and today. This morning we had breakfast with Moomin and Badger, who lent our delighted girl many splendiferous books. I am going to keep them on the shelf for a bit though--Iz has decided that she wants to have a Superhero birthday (fuck yeah! No more Care Bears or Princess crap, and I didn't even nudge her into it), and has been describing all these very funky characters and story lines--I want to make sure I get all the information recorded before she adds Akiko-influenced plot twists.

Oop, Leelo's therapy session is over. Time to go upstairs and see if he'll let me read him a book (probably not). Then I'll try to get him to play with me. He'll spent much of that time running away, pulling my hair, or trying to grab my elbow. We will engage in horseplay, which will make him laugh. Then I'll try to elicit some language from him, and he will either ignore me or protest or get frustrated and start slapping his face. The cycle will repeat until I get fed up, plop him in front of a video, and go mope in the corner with a cup of tea and some chocolate.

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