so we met
6 January 2002
You’re probably wondering how it went on Friday. So am I. I’ve been puzzling it over all weekend.

We didn’t get what we wanted, but we walked away with some concessions and promises of change, and even more important, I think we all discovered the extent of the split between the Damian we know and the one they see at school. The boy we know at home can be boisterous, joyful, loud, bossy, sometimes a pain in the butt, often a great deal of fun, and usually (though not always) is very present and engaged. He has as much language as any kid his age and it’s possible (again, not always, but mostly) to carry on a back-and-forth conversation with him where he picks up the cues as fast as you lob them to him.

We think he’s a delight.

The one they see? Not so much. When a teaching assistant takes him to a toy garage and hands him a car, he stands there, uncertain. When he’s in a small group and the teacher asks him "what’s this animal?" he stares at it, mute. After a long pause, he says, in a tentative whisper, "a goose." When another child grabs a toy out of his hand, this Damian doesn’t do anything at all. He doesn’t grab it back, he doesn’t say "That was mine!", he doesn’t even cry. This Damian is a very shut down, withdrawn child.

They think he’s textbook autistic.

They think -- or thought, at the beginning of our meeting -- that he’s nowhere near ready for the Jumpstart class. That he wouldn’t be able to handle the demands (ie: respond to questions, etc.) That he would be out of his element, in too deep. We think they’re wrong. We gave example after example of why we think this, all the things I wrote in my last entry and more. They listened.

I think they heard. It helped that the school director saw Damian play with us at the clinic meeting in November, got a taste of the real kid. It means she has reason to believe that we're saying it as we see it, not just as we want to see it. She's a perceptive woman. She commented, "When the teachers see him in class, he looks low energy, but the truth is he’s actually pegged at the other end." What she meant: imagine a speedometer. One end is the engine idling, but in this case it’s a kind of obliviousness, someone who’s tuning out the world, who’s lost inside himself. The other end, the red zone, is someone so acutely sensitive to his surroundings that when it gets too wild and out of control, he can’t function. He becomes paralyzed. Still completely aware, still completely attuned, but too attuned for comfort. In class, Damian’s in the red zone.

This is significant. If the teachers and TAs assume he’s not really there, that his brain is in permanent idle, they assume he’s functioning at a far, far lower level than he actually is and they will therefore work with him on a much more basic level. Leading him by the hand to go somewhere, for example, instead of talking to him and letting him take the initiative. Or grabbing a toy back from another kid on Damian’s behalf instead of helping him assert himself and learn that it’s okay to grab it back on his own. If he’s not only getting overwhelmed by the other kids but additionally isn’t being helped by the teachers who are supposed to be his buffer, well, no wonder he fell apart last month. It makes me sick thinking about it.

You can’t just tell someone they’re wrong, though, and expect them to believe you. It’s far better to have proof in hand. The school director suggested we videotape Damian when he’s feeling comfortable and playful, that we capture his exuberance and talkativeness and responsiveness on tape. That we show them the child we know. She said she thinks it will make the teaching assistants’ jaws drop. I think she’s right. It may even make her jaw drop. I also suspect it could help Damian enormously: we’ll finally all be talking about and trying to help the same kid.

The specific changes they promised:

They have a preschool inclusion class on the premises. A few spectrum kids mixed in with a group of typical kids. Spectrum kids can visit that class with floor time therapists acting as their aides. They suggested that Damian start doing just that, first three days a week, then every day for a half hour. We plan to visit the class ourselves on Tuesday and decide if it would be a good environment for him. It’s unfortunately most comprised of five year olds, but my guess is that it’ll still be better than where he is now. It gets him out of the Mixed class for a chunk of the morning, so why not do it? (We'd asked that they do this with the Jumpstart class, but apparently that's against school policy -- they don't let kids visit part time unless they're in the process of transitioning to that class -- ie, unless there's an opening. They only do this visitation schedule, this taste of what's to come, with the inclusion class.)

The Mixed class breaks up into small groups for various activities. The Director suggested that they break up more often, for more activities. Circle time can even be done in two different groups. And they have at least one room free during the morning; they can therefore conduct a small group session in a completely separate room, which will obviously be quieter and less overwhelming. They can bring in a small group (three kids) ten minutes early from yard time to do something fun together -- again, a few kids in an empty classroom, a much better situation for Damian, especially if the kids are at the high end of the class.

We asked that Damian be allowed more closure when something happens. If a child hits him or runs into him or grabs a toy, Damian needs to have his emotion identified and responded to, he needs help addressing the issue with the other child, and he ideally should have a response from the other kid so that he can hear an "I’m sorry." It will turn an inchoate almost physical sensation into a quantifiable emotion that won’t threaten to overwhelm and shut him down. This is crucial.

We pointed out that Damian does well if you get his motor revved with gross motor activities (playing tag, chase, hide and seek, blowing bubbles and running to pop them, etc.). So he’s going to get to go outside with one or two other kids in the morning before the first circle time, for a supervised activity. I want to be sure that this is actually working, though, that the teacher who goes out there works to get Damian excited and involved. Again, the video is crucial here. If they see his delicious happy shriek, they’ll want to coax it out of him themselves.

They promised that if a spot does open up in the Jumpstart class, he’ll get first dibs. The director of education started off the meeting saying "Even if there was a spot, he’s not ready," and ended up an hour later saying "He’s clearly a Jumpstart candidate." The school director thought it was possible he might switch over as early as June or July if someone leaves for the summer session. Not ideal; I'd rather hear Februrary or March, but still, it's better that than September. And if all the other pieces are actually in place soon and especially if the TAs start to see Damian through our eyes, maybe we won’t feel as urgent about the switch.

This is not to say we won’t keep pushing. We will. I plan to spend more time at school, trying to show them how to work with Damian, how to coax the boy I know out of hiding in that threatening environment. We plan to ask more questions and make more complaints if we see something we don’t like. We’ll also sit down again soon, assess where we are and if it’s good enough yet.

So that's it. That's the new program. They're going out of their way to arrange their classroom to suit my son's needs. I should be happy. I'm not sure how I feel, except that I still wish for more. Logically I know it’s all we could have expected. They have no slots in the Jumpstart class, and even if they could potentially make room there for him, they have to believe us, believe not only that he’s ready for it but that he needs it.

Dan said after the meeting that this was a good first step. This, I think, is a healthy way to look at things. I'm frustrated they didn't bow down to our greater knowledge of our child and say "Oh my god, we made a huge mistake! Let's rectify it instantly! No matter what it takes!" But life's not like that, is it? At least they did listen, and at least it did do some good. It's an opening, anyway. The rest remains to be seen.

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