gaps and strengths
21 February 2005

Welcome to everyone who came here from the Today Show via MSNBC. I'm honored. I haven't seen the show myself yet -- I can't watch with Damian around, he has yet to ask what autism means, and I'd prefer to delay that complex and self-image-altering question for a while longer -- but I'm very glad the show is taking an in-depth look at autism and especially that it's exploring the Floor Time/DIR approach, which has done so very much for my child.

If you're coming in from the MSNBC link, feel free to take a look around my site. Damian was diagnosed four years ago, and I wrote about the experience as it unfolded. It's all here. Denial to concern to diagnosis to worry and treatment and progress. You'll find my explanation/description of the site here, and this page describes the therapeutic approach we've used. Also feel free to email me.

I'm also spurred to write an update I've been meaning to post for a while. Damian has been in a regular public school kindergarten for nearly six months now. This was the goal, wasn't it? This was what he left when we pulled him out of a regular preschool class back in 2001 to enter the maze of special ed services, this was the looming, sometimes frightening but sometimes thrilling ticking clock: would he be ready by age six? Would he be able to sit and learn, to focus and respond, to interact and enjoy? Did all that Floor Time, did all that occupational therapy, did all that worry and love pay off? Is he ready?

The short answer: Yes, mostly. The longer answer: Academically he surprises me. He sits quietly, no squirms or stims. He pays close attention to the teacher. So close, in fact, that he comes home telling me all about what she said and what he learned and even mimicking her exaggerated shrug with eyebrows and hands held high.

Table work is hard for him still, but he does it. He uses glue without obsessing too much about sticky fingers. He cuts and colors and writes. It's all harder for him than it is for his fellow kindergarteners and he inevitably takes longer doing it than they do, but he refuses help and he does get through it. I hope it'll get easier with time and practice. I hope so for his sake.

They had a math test (pattern recognition and such) last week or the week before. His aide (yes, he has an aide - more on that in a minute) said that the teacher gave them verbal instructions only, and then they had to get to work. The other kids were confused, had a hard time. Damian got right to work and finished quickly. Excellent. Auditory processing? Check. Academic skills when there's no fine motor to worry about? Check.

Behavior problems? What behavior problems? He does better than many of the kids without diagnoses, or so the teacher, assistant principal, inclusion specialist and various parents keep telling me. Yup. That's my boy.

Socially… well…

He has an aide. We were originally supposed to get someone from his old preschool, ie: someone trained in Floor Time who knows how to facilitate social interaction. Because my child may not need academic support but he gets lost in a group of kids. He has friends, he has play dates that sometimes stutter and fail to mesh and other times flow so well it's easy to think he's no longer autistic. And oh, he can be talkative and exuberant and empathic and so very imaginative at home but he still tends to get overwhelmed and not know how to enter the social maelstrom in the play yard. It's a combination of sensory overload and still missing some of the particular skills, the specific understanding of what to do in X situation and how to handle Y negotiation.

He's come such a hugely long way in the past four years, he continues to amaze and delight me, but he still has deficits and this is one. No, this is the main one. Part of it, I think, is that he still processes things more slowly than another child might. If you ask him a question, he may pause before he answers, and his voice might be so soft you have to bend close to hear. If he wants something from you, he may start to ask and then pause, getting his thoughts together, remembering what that's called and how you articulate this. It still sometimes feels like he's translating his thoughts into a different language and maybe he is. But it makes things hard with other kids because they don't know to wait for him to respond, they assume he won't and they move on to other children who will.

At any rate, we were supposed to get someone in there with the skill set to help him bridge those gaps, but at the last minute their general contract changed and we no longer had access to that vendor. The district assigned another vendor instead. This agency turned out to be a disaster. I won't go into detail - the specifics would fill pages of ranting and smack strongly of tattling and gossip - but we went through three aides from this place. The first didn't help him socially at all and she finished his table work for him! He'd draw a tree, she'd add a cloud or two in the sky and the horizon line. Vastly inappropriate. His self portrait? A child-drawn head on an adult-drawn body, reminding me of nothing so much as Frankenstein's monster, an abomination that never should have been.

When she left, I insisted I meet her replacement. I also spelled out what I felt he needed: someone with a high affect, someone fun who knew how to draw children to him, someone who had the training to properly support him socially. I met her replacement, a young woman with a meek voice and slow affect and the weakest handshake I've ever encountered. I said no, I want someone else.

Someone else was assigned. She seemed nice enough. Maybe was nice enough but… um… she did crossword puzzles by the snack tables while Damian ran in circles on the grass, ignoring the other kids. He was regressing before my eyes and the agency provided no help. They may be good at academic support, I don't know. I suspect they mostly handle more severely affected children. They tried to do hand-over-hand support with my extremely capable son, without ever finding out what he could do himself. They were wrong for Damian. I fired them in early November. Better he do without than have this kind of non-support.

We finally got the paperwork ironed out in December and signed up with a new agency, a place that a friend had highly recommended. They've turned out to be ideal. His aide gives only the support he needs to finish his table work faster and concentrates on social interaction. At first she had to do a lot of prompting; Damian had gotten used to withdrawing into his shell during free play and needed to be coaxed back out. But now she says she sits back writing up her notes and watches as he approaches and joins other kids, playing Tag outside and playing with dinosaurs or toy groceries or Lego rocket ships inside the classroom. The mere fact of her presence triggers his awareness that he can and should interact. But if she's absent for a day, he once again regresses. So it still feels difficult and somewhat foreign to him. He'd still rather play with adults (he's always asking me to play with him) who negotiate in ways he understands. Kids are still a challenge.

Dan and I upped our own Floor Time play with him recently, for various reasons. Mostly because he still could use it (as all kids could, though Damian more so) and we'd been lax, preoccupied with our own stresses and worries. We needed to reconnect with him in those particular ways and help him rise developmentally once again, come closer to fulfilling his potential. It doesn't stop, does it? But then, we all need to work on ourselves, don't we? It's a lifelong journey.

But I digress. We've started doing more Floor Time with him. He loves it and we're starting to see all sorts of evidence of expanded emotional understanding, as if it had been dammed up and was waiting for the opportunity to come rushing out. Things like rushing over to me when I'm hurt, "Mommy, I'm sorry you hurt yourself, Mommy, can I kiss it better?" Things like understanding and incorporating slang and colloquialisms into his language. Even things like lying better. And he's become fascinated with gestural communication. He points to a non-food object, points to his mouth, shakes his head and miming disgust. Points to food, points to his mouth, nods his head, miming delight. He loves finding pantomime ways to express himself, it's a new skill. And as odd as it seems, an important one. Like many of the more capable kids on the spectrum, Damian skipped over gestures and went straight to words. According to Dr. Greenspan, this creates a developmental gap; I believe it has to do with the ability to comprehend body language, but I may be misremembering. The fact that Damian wants to experiment with it now thrills me. I feel like he's progressing again after a stutter of regression at the beginning of the school year, and it's so wonderful to see.

Thursday morning before school Damian put together a Kid K'nex fish. He swam it around in the air, explaining to me that it was on Jupiter. Turns out that Jupiter has water under the gas cover (he pointed to the ceiling, told me that's where the gas was), and that fish live there. Who knew? Then one of his frogs attacked the fish and it died. He ran off and came back with the same K'nex face surrounded now by spokes; it looked like a starfish. This is apparently the next stage for fish on Jupiter, they metamorphose into starfish. According to Damian these starfish don't die, even if a monster attacks them. "What happens when they get really old?" I wanted to know. "They don't get old. Nobody gets old on Jupiter." Ah. Okay.

After a short journey to Saturn (not its rings, though, just the planet itself, which apparently only has gas and not water), it was time for school. I dropped him off and met up with his aide and the supervisor. As we walked down to a local coffeeshop, I described the morning's scenario, 100% vintage Damian imagination. They were both amazed. He doesn't show this side at school, of course. The aide says she doesn't think any of his classmates are capable of that level of sophistication. And this may be part of the problem. He doesn't play like kids his age. His brain works differently. Not worse, certainly not that, but differently. As a result, he doesn't play with children the way he'd play with an adult who can fit into his scenarios. He has to follow the kids' leads, fit into their interests, and I think he doesn't always want to. It's a problem that may partly be solved with maturity on all sides, as the other kids become more sophisticated in their play and he grows in social understanding. He needs to learn how to gauge his companions, how to bring them into his play, how to open it up for them. He's got this fantastic imagination but he's still not used to sharing with other kids.

Damian had a play date yesterday with his best buddy from preschool. Teddy and Damian pretended to be kitties together, but that didn't go much farther than lying in our laps to be petted (they used to have various scenarios they'd play out but it's been a while). Then they played with Kid K'nex; Teddy built an airplane and Damian built a rocket ship. Damian's was of course manned by his favorite small rubber frog. Teddy got two frogs. Damian's frog flew to Jupiter. Teddy's did too. They had to avoid the red spot, though. Hot! Then they flew around the room outer space and Damian had to rescue Teddy from being sucked into a black hole. He did, but then Teddy got sucked into another (those tricky black holes, they're everywhere). Sounds fantastic, right? Sounds like just what I wanted for him. And it was. I wish for a Teddy in his kindergarten class, someone who shares his interests and can mesh with his ideas. But Damian's not used to it and I needed to feed him prompts: "Damian, Teddy's about to get sucked into that black hole! Uh oh!" and even, "What can you do?" He's not used to thinking in those terms, I think. To sharing his world with other children. He likes them. He looks forward to play dates with such excited anticipation. But his ability to connect sometimes falters and when it does, his first instinct is withdrawal. Still, yes, withdrawal.

He has the skills now, wonderfully so. And when he's with me and just me, I can easily forget his deficits. They're practically nonexistent except for a stutter in his thought process and a sometimes faulty self-regulation (ie: he still sometimes cries too easily and gets mad too often, though it comes and goes). He's a delicious, delightful child. But with other kids, the gaps are still too big and so he still needs an aide in school for now as well as an extra assist at home. The journey continues.

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