new school, new paradigm
12 October 2005

I thought Los Angeles was surprisingly good for special education, at least in the special education of one particular young boy. I thought they treated us well, gave him the intervention he needed so desperately.

And they did. To a point.

The point arrived this past spring. Our yearly IEP meeting was an odd experience. It would have been a troubling one, except that we were already planning the move. I find myself wondering, though, what if we didn't? What would his school year be like now?

This is not to say that it was a bad IEP meeting. Everyone said such nice things about him, how could it be bad? The occupational therapist started the meeting by saying, "He's very smart," giving examples of how fast Damian picks up on things and how well he analyzes. And he does, or rather, he can. When his mind is clear and focused. The OT went on to say that he sees Damian much like any other shy, gifted child. I'll admit, I can't help but cherish that thought. After four years with the word autism reverberating in my head, a fear and then a dark presence gradually lessening but still tangible, still real, it's lovely to think that maybe we can reframe what Damian has, who he is.

But I think it's somewhat false. As Dan said at the meeting, a shy child is always aware of what's going on around him or her. But Damian will sit down in the midst of a group and go away. Just disappear.

Damian's classroom aide left a few weeks early last June, leaving him to go it solo. A good test. When I accompanied the class on a field trip to the Beverly Hills Library, I got to observe the results. Which weren't quite what I'd hoped. Damian was with but not with the other children. He'd checked out. They didn't understand, they were used to the fun, funny kid he'd been when he had his wonderful aide. So one boy made faces at him from across the room. Damian was oblivious. I nudged him and pointed it out. Then he looked. But it was too late, the boy had moved on. Later, they were lining up and another boy started doing karate moves on Damian's back. Damian didn't look around. He'd tuned out and couldn't even register the sensation. I leaned forward and said, "Look what Zander is doing." Then he looked. Then he smiled. Then he did play-karate moves back and the two boys had a nice interaction.

He's not unwilling. He just needs to be coaxed, that switch needs to be flicked on. Do shy children act like that? Do they turn themselves off? I suspect not. I think it's part of his developmental profile. Part of what remains of his autism. And he still needs extra support to get past that or he'll have problems in middle school, in high school, in the world. And isn't that part of the responsibility of a school? To teach children how to get on in life? How to be functional in the workplace?

Apparently not. The members of the school team told us that his socialization wasn't an issue they could address. If he can access the curriculum, he doesn't need extra attention. If he doesn't act out and threaten to hurt other kids, he's not entitled to an aide. This is, apparently, LAUSD policy.

I told them that without an aide, Damian would withdraw. That he'd fall through the cracks. That I'd have to pull him out and homeschool him because he'd be getting none of the social interaction, the real education he needs so desperately. They gave in. Grudgingly. They offered one hour of aide time per day to cover recess, and only to last through the transition process (ie: the first 30 days), after which it would need to be re-assessed. We asked for two hours. They agreed. They wrote it up as being for a transition to a full time schedule in first grade, but we all knew it was for social bridging. And we all knew they were only giving it to us at all because Damian was leaving the state.

If Damian had stayed at that same school for first grade, he would have been one of 20 kids in a classroom with one teacher. He'd be sitting at a desk passively listening, never raising his hand (because he doesn't), getting no sensory integration work to help him up-regulate (raise his overall affect and energy level), and most likely playing all by himself in the yard at recess. His occupational therapy would focus on fine motor issues, primarily on hand-eye coordination, which is important but not the whole picture, and his speech therapy would largely consist of the therapist saying, "Talk louder," which does nothing to solve the underlying problem.

That was Los Angeles. Now we're in New Jersey. New state, new town, new implicit rules, new attitudes. It's a risk. A big one. We'd heard good things about the state, the school district, and the particular school, but was that only as applied to lower functioning children? Would they want to help a child who can sometimes look like he's just shy but gifted and what's your problem, Mom, he doesn't need any services?

I sent Damian's IEP to the registrar when we applied for enrollment in this new school district. The registrar handed it off to the school psychologist at Damian's new school, but even before she did, she called the psych to say I wanted to talk with her. We were in Minneapolis at the time, halfway through our cross-country drive. I spoke with the registrar on my cell phone while walking up a set of stone steps to head through Minneapolis' warren of skyways. The psych called me ten minutes later. I spoke with her while looking out over a misty view of an unfamiliar city. We talked for quite a while; I told her all about Damian, everything I could think to say about his needs. She said she'd speak with the principal, figure out his placement. We said goodbye.

We arrived in Montclair the weekend of September 17th. That Tuesday I was going to bring Damian in to meet his teacher and his classmates so he could start Wednesday with less trepidation. Except that I spoke with the psychologist that morning. She told me his class placement.

The inclusion class.

Say what? He was in a regular kindergarten class last year, what the hell are you doing putting him in a special ed class? He needs the peer modeling, he deserves to be with children who he can learn from and among. He's done the therapeutic classroom before, it was good for him, he's past it now.

"Come see the class before you decide," said the school psych. So I went. By myself. Without Damian.

What I saw: two teachers, one regular and one special ed -- but the kids don't know that -- plus two free floating aides. Twenty two kids, five with classifications of one (mild) sort or another, the rest as normal as kids get. Both teachers warm and responsive, interacting individually with the children as well as teaching to the group.

I couldn't think of a reason not to put Damian in this class. Besides, his name was already on the front of his desk.

I brought him back that afternoon. He sat in his assigned seat, took out his math workbook. He didn't have a pencil, so the kid next to him offered one of his and said they should be friends since they sit together. One teacher stood at the front while the other teacher knelt next to Damian for several minutes, helping him get up to speed in a very non-patronizing way. After math, she stood up and said they had a special event: a new kid in class. She introduced Damian and talked about what it was like for all of them a few weeks ago, how they all felt shy and uncertain and didn't know anyone, right? Well, he's feeling all of that now, so why don't we introduce ourselves? So all the children did, one by one they said their names and their favorite things. Some said they wanted to be friends with him. One boy said his favorite thing was football. The teacher asked Damian if he liked any sports. He said, "I like hockey," and a number of kids got excited and started talking about hockey.

The mood in the room was so warm, I felt like I'd stepped into an alternate universe. It's not that Damian's last school wasn't warm, it was. But this (regular ed) teacher showed such an understanding of how to get the children to give Damian the support he needs without being explicit about the reason. I felt like I'd struck gold. After class, a bunch of kids surrounded Damian and started asking him questions. Warm, interested. A little overwhelming for him. Which I mentioned to the teachers, who understood. They told the kids they needed to wait for answers, not ask questions one on top of the other. But I love how eager the kids were, I love how welcome they made Damian. And I love, too, that I can tell the teachers the problem and have them understand and respond.

Earlier that afternoon, I spoke with the occupational therapist. She complained that his IEP had too few OT goals! She talked about how she wanted to work with him on some equipment, bringing his affect level up (sensory integration work, yes!) and then bring him into class to do fine motor work there, so he'd be more regulated and interactive. And I never had to say a word (but did, of course, things like, "Yes!" and "Exactly!). Astounding.

But what about Damian's most vulnerable time, recess? His current IEP calls for a one-on-one aide two hours a day. But I didn't insist on a one-on-one aide here after I saw the setup in class. Two aides, one who attends lunch and the other who attends recess? Not bad. And I began to discuss Damian's issues with the recess guy. He seemed game. But then he was transferred. No coverage during recess. What to do?

I called the principal. "We have an issue." Her response surprised me. "I think I've already fixed your problem." Turns out the school psych came into her office that morning and said they needed to do something about this gap. So she found someone who could cover the time and who was very good, very upbeat and warm and great with kids. Good.

Except. When I asked Damian a few days later what he'd done during recess, he told me about how he'd played on these moving steps like the ones at Aiden's Place playground, do you remember, Mommy, and there were some other kids there doing the same thing he was and no, there weren't any grownups around, they were all talking in a group by the benches.


Dan said, "Maybe she's observing, and if she sees him playing interactively, maybe she won't need to get involved."

Yeah, maybe.

I asked him a few days ago about recess. He told me they played follow the leader. So that was good. Sounded like someone instigated a structured activity, sounded like the aide was on the case.

Or was she?

Yesterday I picked Damian up from school and asked the teacher how the aide was working out. Oh, she was good with the kids, and the teacher had told her not to hover over Damian, that he didn't need the extra support in class. But she - the aide who was assigned to cover his vulnerable recess time - wasn't there during recess. Her two hours don't start till afternoon. I was girding myself for battle (or at least a quick phone call to the school psychologist), but the teacher stopped me. "Don't. Not yet." Why not?

Because some of the kids in the class have taken Damian under their wing and are making sure he plays with them during recess.

Let me say that again. Damian is playing with other children during recess with absolutely no adult intervention.

How did that happen?

The teacher told me that he's doing very well in school. That he's smart (well, yes) and that he's sociable. My kid? Sociable? But I believe her; when the kids trotted outside to meet the parents, the teacher walked in front next to a small girl. Behind her, Damian walked hand in hand with another girl. Hand in hand. And as Dan and I talked with the teacher, Damian ran off to investigate something in the yard with another classmate, a boy. He's part of the group. One of the kids. And Friday when Dan went to pick Damian up, a mom approached him: her daughter wants a play date. As Dan stood talking with the mom in the grey drizzle, Damian and the daughter stood together under an umbrella, chatting. My kid. My autistic son.

Is he cured, then? Were they right in the IEP meeting in Los Angeles this past June? Is he now just a regular, albeit shy, child? Not quite. Yes, he's come one hell of a long way in the past four and a half years. Yes, he has most of the tools to interact with other children, to be present and connected and appropriate, he has the ability, he has the desire and some modicum of social awareness. But I think back to how he acted on that field trip to the library in June. I think back too to the aide's supervisor and the reports she gave me, how much he changed from May (with the aide) to June (without), how much he withdrew. I believe with all my heart that if he had stayed in that environment, he'd be withdrawn this year. He'd be spending recess time wrapped around the pole in the school yard, talking to himself and making swishing noises, playing a semi-imaginative, semi-perseverative game all by himself. He'd be drifting away -- not unhappy, exactly, but not connected.

I think this change, this evolution, this transformation is about him, yes, it's been latent in him for a while, aided by hours and hours of floor time, of facilitated play dates, of a wonderful classroom aide in kindergarten. He's ready. But this metamorphosis is just as much about the new school itself. It's about the occupational therapist, who's giving him the sensory help he needs to organize his body and his mind. It's about the speech therapist, who is helping build his confidence and his voice. Most of all, it's about the teachers, who treat him tenderly but with explicit attention to his needs, who bridge and facilitate and then step back.

At Back to School Night, I saw a book on the teacher's desk about integrating special needs children into the regular classroom. These teachers are educating themselves. They're making the effort. To me, after years of telling teachers what they needed to know to interact and help my son, this is extraordinary. I don't have to tell anyone anything. They're doing it on their own. They get it. And he's thriving as a result.

What a difference a change of locale can make. What a profound difference.

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