how it feels
20 November 2003
I’ve been wanting to write a capsule description of where Damian is right now, but I’m not sure I can capture it fully enough. For tidbits on cute (and sometimes not so cute) things he says and does, you’re better off checking my (daily!) blog. (Which is not so much a blog as a hybrid blog/journal thing. More fun than just links, I swear.)

What I can do, though, is give you a sense of his current issues. I know it was a puzzle for me a year or two ago. When an autistic child speaks fluidly, plays imaginatively far more than perseveratively, and even has friends, what’s left? When a child has reached Stanley Greenspan’s level six and is able to sustain symbolic thinking, are you done with floor time?

The answer, of course, is no, though the specifics change according to the child and that child’s developmental makeup. With Damian, our current biggest concerns (aside from the visual-spacial is-it-really-a-problem? problem) are self regulation, identifying his own emotions and acting on them, and… well, those are it for now. Note I said biggest, not only, though. And they’re sort of a single issue. Because when Damian feels something that makes him uncomfortable, his self regulation goes wonky.

An example: He had a play date with a friend a few weeks ago. It was going swimmingly until the boy accidentally pulled something on top of Damian or smashed a toy into his side, something along those lines. Damian was briefly upset. I comforted him. He ran off. Everything all better. Or so I thought. But after that he was a whirling dervish. Not spinning, not that, but racing around the house laughing maniacally. Throwing himself on the ottoman, still laughing. Shouting gibberish, giggling some more. He was over-regulated, wild. Silly, yes. And yes, kids are silly, but this was something more. He couldn’t calm down after that. I tried sitting on him, I tried hugging him. Dan got home and tried wrestling. We sent him off to jump on the trampoline. Nothing worked, I think because we hadn’t dealt with the emotional trigger.

Another example: A play date with another friend. This one was supervised/orchestrated by Kahuna, a biweekly ritual we have. I was sitting in the living room, my computer on my lap. Out of the way. Peaceful. Or it was, before Damian came racing into the room, being chased by his buddy, who was trying to pin him down and draw on him with a bright green felt-tipped marker. Damian was running away, his face a tense combination of anxiety and giddiness. He was shouting “No!” and “He’s chasing me!” but he was laughing. And after that, for the rest of the session, he was disconnected and refused to play any kind of sustained game with Kahuna and his buddy. It’s like he went away somewhere out of reach. There to talk to and yet not really there. Disconnected, discombobulated, disregulated.

At our last floor time clinic meeting, we talked about this issue. Because it’s not as simple as it looks. When a kid tries to grab a toy away from Damian in the sandbox, he can get huffy and he certainly knows how to express himself with the right amount of force and conviction. “That’s mine! I was playing with it, give it back!” But when it’s a friend of his who’s acting aggressively, he doesn’t know how to process that and so he resorts to a kind of play that feels easier because it doesn’t require thought. He runs, chases, giggles. He can’t handle the emotion so he subverts it, but his body doesn’t know how to deal with being repressed and so he becomes manic.

Cheri felt that he needs us to go back a few developmental stages, help him fill in the gaps, help him feel his emotions fully in his body. What this means, at least at the start, is that we do a lot of mirroring; we enact what we perceive him to be feeling. We’re modeling the emotion for him.

An example: One morning a couple of weeks ago, Damian did something he’d been warned against. What doesn’t matter, only that he knew better. So when Dan caught him at it, he scolded him in an angry voice, as you tend to do when concerned for your kid’s safety. I found Damian a few minutes later. He was curled up in a ball on the couch. Fetal position, legs tucked under him, head down. An emotional response but not a coping one. I sat next to him and put my arms around him and my body around his like an enclosure. I said over and over again, “You’re sad. So sad. You feel sad.” It felt almost dumb. No, it did feel dumb. He’s a smart kid, he can handle something a lot more sophisticated. But not right now, he couldn’t. He needed that simple acknowledgement and tacit approval of his feelings. He needs to stop censoring his feelings. I know it sounds new-agey but it’s really true: he needs to own his feelings in his heart and in his body; only then will he be able to process them and not let them shut him down.

That chilly morning, I repeated my “sad” mantra for a bit, eventually adding the details: “Daddy scolded at you and that made you feel bad and sad.” And eventually Damian unfolded and sat on my lap. Then he said, “Maybe we should go rock on the rocking chair, that would help me feel better.” So we did. For about five seconds, after which he bounced down and went off to play, all better.

Another example: I was at the bookstore with Damian. He and I were walking down the stairs when he decided he wanted to go back up to the top and go down again on his own. I said sure and sat down on the steps to rest. Damian tripped down a few steps, then fell headlong to the landing, bursting into tears at the bottom. Normally, I’d comfort him and kiss it better and do all that Mommy stuff. This time I sat him in my lap, giving him a comforting hug, and started asking how it felt when he was falling (besides the physical hurt). He was noncommittal. I said “I bet it was scary. I was scared when I saw you falling. I was really scared.” I made my voice vibrate with it and I showed him a scared face. He tried it out too, and admitted he had in fact felt scared.

It’s an odd, slow process, sometimes a difficult one. When Damian started yelling at me on the car ride home, angry at some made-up-on-the-spot indignity (I wouldn’t give him some milk the minute he asked for it or I gave him the wrong frog toy), I had to subvert my normal strategies of teasing him out of it or talking through the logic of it. Instead I just said, “You sound frustrated. Yeah, you’re frustrated at me. You feel frustrated, you feel mad,” like a boringly repetitive robot mom (but with more emotion in my voice, because after all that’s part of the point too.) His anger lasted longer but oddly, I think it subsided easier. He usually starts threatening me (“If I kick the back of this seat, what will you do?” and on like that, testing the possibilities) but he didn’t the last time we went through this. He just got angrier and angrier, owning it completely, but then he dropped it on his own without negotiation. Better? Probably so.

This is a short period, thankfully. Just the beginning of this new stage as we more fully establish the building blocks of emotional awareness. He understands emotion, can pick it out of any sketch or photograph. But when it’s him in the midst of it, I think it still floods his body and makes him unable to be fully himself.

I’ve seen some interesting results so far. A few months ago, when he got upset with us, he’d pout, hang his head (literally, his head down like a sullen dog), and stomp around. He’d also say “look at me, can you see how I’m feeling?” and expect us to respond to his theatrical rendition of a sulk. It was like he was performing the emotion rather than feeling it. It was pretty funny, I confess, but it’s not fully functional.

Well, as of this past week, when he gets upset, his voice trembles and his face crumples. He’s not acting anymore. This is the real thing. The strangest part is, it wasn’t until I saw and heard him that I realized, yes, this was missing before. He was expressing maybe half the rainbow of human emotion, blocking out/stuffing down the rest, particularly the hardest ones: fear and vulnerability. No wonder he has trouble regulating his body. Sometimes there’s no other way for him to express himself than to bounce off the walls.

He’s been more emotional the past few days – more volatile, more needy. It’s a little hard to handle but I think it’s a good thing. That’s what happens when you start letting yourself feel more, the emotions flood in and you feel everything. He’s also been much less stimmy, except when we’re talking about something difficult: “Damian, why did you draw on the wall with lipstick?” “Damian, what happened at school today when you went crying to the teacher? Did you think the other kids didn’t like you?” (He told her that, actually, in a voice so tremulous he was hyperventilating.) When we’re trying to deal with tough stuff, that’s when he can’t keep still; he wants to focus anywhere but on our words. The emotions are still too hard sometimes.

So we’re not done with this, but it’s a good start.

I just realized after a friend mentioned it to me: in my last entry I made the EEG sound imminent and you were probably wondering what we’ve found out. At the time I thought we’d know within weeks. But the earliest we could schedule the appointment in San Diego was the first week of March; there’s another place closer by that may be able to fit us in sooner but now it’s already the holidays and we’ll wait till January, at least. And I’m having qualms about doing it at all. It’ll be expensive and arduous for Damian and will we really put him on something like Depacote if he has very mild seizure activity in his brain? I don’t know.

I just don’t know. I watch him draw a circle. It comes out perfectly. I watch him do other fine motor activities, I watch his hand/eye coordination. I’m not convinced the problem is insurmountable without medications. He says, “I’m just beginning to learn to draw,” he knows he’s behind his classmates in this and he’s still somewhat avoidant. But when I show him how to draw a stick figure and give him a sheet of paper, he does a credible job of it. And the only times I see him tune us out it looks a lot more like willful shut-down than it does like an absent seizure. But what do I know? I’m no expert, certainly.

We should probably go ahead and get the EEG. Peace of mind and all that. But I still don’t know how I feel about it. Much more ambivalent than I did a month ago.

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