10.05.2004

Leelo Update

Leelo continues to simultaneously do well and frustrate us. He remains gloriously and happily unaware of how his behavior makes our emotional states fluctuate.

Leelo's picked yet another odd behavior with which to drive us nuts. This time it is off-the-scale oralness. In the car or in lieu of other mouthable objects, this means sucking on his shirt, or, more rarely, his hand. He'll stop for a second if you yell at him tell him to, but it's otherwise constant. We have a growing, squirrelly little stash of objects-we-thought-he-couldn't-put-in-his-mouth-except-he-can.

For some reason the shirt-sucking makes me instantly insane. More so than previous, thankfully discarded behavioral obsessions such as constantly removing his shoes, screaming whenever sunlight touches him in his car seat, smacking himself in the head, and crying whenever we eat in front of him. For now I am trying to give him acceptable chew toys as shirt substitutes, and that seems to work most of the time.

Two nights ago he had another poo attack. Seymour had checked on him two minutes before, and, though Leelo was not asleep, he was in bed and fully clothed. Moments later Seymour detected a wafting stench from the kids' room, ran in, and found carnage. Clean-up fun for the whole family! (Iz continues to find this hilarious. In fact, she vetoed having her own room--not that we have the space to give her one--because she says she needs to tell us when Leelo gets naked.)

Leelo is still of a mindset that, unless truly motivated, he need not identify objects as any color other than green. He acts as though it's just not worth his time, the little twit. Unless you remind him that he's working for some veggie booty. Or you invert the question.

What he knows vs. what he uses is astounding. This is typical for kids like him, I've heard. Last week as he, Iz, and I sat for 90 minutes at the coffee shop next to the mechanic, waiting for our car, I ran him through every noun, action, and object identification trial I could think of. I drew pictures on the magnadoodle. I asked him questions about animal sounds. His success rate was >95%.

But he only uses 5% of the words and concepts spontaneously. No one except his family and therapists would ever suspect how much information is trapped in his head.

Watching him at school depresses me. I know it shouldn't, I know he isn't like his peers. He's so much more present and involved than he used to be, but it is still difficult having the outlier kid.

There is still lots of good stuff going on. At the team meeting on Monday, he grabbed both Therapist L and Supervisor M, demanding that they "Go down the stairs!" so he could show them how his crazy nesting mommy had rearranged her bedroom (there wasn't space for a bassinet, before).

He gives lots of kisses. He's still really snuggly.

He's still responding well to more complex requests, such as "Bring me your backpack," even though it's across the room and wedged behind a chair.

His frequent wee hours waking sessions are, more often than not, turning into climb-into-bed-with-mommy-and-daddy-and-fall-right-back-to-sleep-again episodes. Totally tolerable--for me, if not for light-sleeper Seymour.

In other Leelo news, we did our final food reintroduction, of peanut butter, two nights ago. It resulted in no change that we can see. Now that all the reintroductions are done, we get to do a poo and pee collection series in two weeks, draw some more blood (gaaaah!), and then regroup with our DAN! doctor, the good Dr. P, to see where Leelo's food sensitivities are.

That's it. Unless you're a data junkie and want to review the minutes from Monday's Leelo team meeting.

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