a new twist
8 October 2003

This is harder than I thought when I sat in her office and said “Yes, of course, I agree, he needs the EEG.” Shouldn’t we be past all this now? Damian’s come so far, he’s on the road to recovery, he has friends and language and an imagination the size of the universe. And yet. He’s not all better.

In a way, the fact that he’s grown so much in so many ways has highlighted the arenas where he hasn’t progressed in the same way. And that’s what makes it hard. Because maybe we should have seen this, should have done this, years ago. It would have been incredibly traumatic for him, but maybe we owed it to him anyway.

She says we shouldn’t waste time on regrets and I know she’s right. Just look at the present, plan for the future, do what you can now.

So. Here’s the deal. Last spring, during a floor time clinic meeting, Cheri (our floor time supervisor) brought up the possibility that Damian had some problems with his visual-special processing. We know his visual perceptual abilities are very good. Above average, according to his occupational therapist. And we see the truth of this. Damian can tell me all sorts of things about the buildings we pass on the way home. He pointed out a change in a restaurant sign to Dan before Dan noticed. He’s got a sharp eye. (He says “I’m turning on my sharp eyes now.”) But visual-spacial is different. I’m not completely certain of the definition, but I believe it has to do with knowing where things are in space and where they are in relation to your own body, translating the images to something more concrete in your head.

We did an experiment that afternoon: we brought Damian over to stand against a huge sheet of butcher block paper tacked up against the wall. Cheri drew the outline of his body, then asked him to step back. Then she pointed to his (real) ear and asked him to touch the same body part on the paper. He did. She asked him to do the same with all sorts of body parts. She pointed to his elbow. He had to think about that one. He touched his own elbow, trying to see it in his mind. Then he stepped forward and touched… the outline’s shoulder. Same problem with hip and knee. I tried the same experiment a month or so later at home: we were pretending to rub invisible lotion on each other. I asked him to rub some on my elbow. He had to touch his own elbow, placing it in his mind, before he could touch mine. So I know Cheri’s experiment wasn’t a fluke.

His floor time team started doing more visual-spacial games with Damian: treasure hunts, the “now you’re hot/now you’re cold” game, playing with flashlights in dark rooms. We saw some slight improvement. I think. This is hard to pin down, this stuff. It’s easier when kids are smaller. I remember when Damian was two years old, he used to try and shove puzzle pieces in upside down, oblivious to how they fit. But he stopped doing that and I thought he was better. He was, but maybe not enough.

Last month, Damian went into his pediatrician’s office for his yearly checkup. The nurse had him look at the eye chart. You know the one: huge letters at the top, slightly smaller just below that, each line gets smaller until they’re impossible to read. The one for kids has two sides. One uses the normal alphabet, the other uses symbols: a star, a moon, the silhouette of a house. Damian chose the alphabet. He couldn’t read it below the third line, the “get this kid to an eye doctor, do not pass go!” line. But I know he can see better than that. Otherwise how could he tell me about the balloon flying over the sandwich shop, how could he tell me the letters written across the sky by a one-man prop plane, how could he point out the tiny red bud on the cactus in the front yard? So we tried the other side, the symbols. Once he had less to process, he relaxed and told us what he saw. His eyesight was just fine.

We started talking then about vision therapy. I don’t know much about it – well, next to nothing, really – but there are these specialists, eye doctors who train kids’ eyes to process differently. It takes weeks – months? And it costs a lot of money. But if it’s necessary, we’ll do it. Of course we will.

First we have to figure out if it’s necessary, though.

Here’s the other thing. We have had no specialist following Damian’s case as he progresses. Most children on the spectrum are followed by a neurologist or a pediatric psychologist or a developmental pediatrician. Someone who can see the whole picture, the various interventions and treatments and classroom placements, who can offer advice and guidance and letters backing parents up in IEP meetings and even in court. We saw a developmental pediatrician two and a half years ago, a woman I dubbed Dr. Red. But we didn’t like much of what she had to say. Instead of pinpointing Damian’s problems, she seemed to give us a cookie-cutter approach, a one-size-fits-all formula. And many of the particulars didn’t fit our child. She wanted a 24 hour EEG, yes, but she also wanted an MRI, also an intensive hook-the-kid-up-to-a-machine hearing test as well as a huge battery of blood tests. And she made it clear she was going to recommend sweeping dietary changes and various other interventions and not really listen to what we the parents thought was appropriate for our child. I’ve since heard that she’s done a good job for other parents, but she seriously misread my child and that’s made it hard to go back to see her again. She thought he was deaf, for chrissakes!

But that’s left us without someone we can trust to oversee his interventions. This hasn’t mattered before now. He gets most of his therapies through his special needs school, everyone talks to everyone else there, everyone sees the same child and knows what they’re doing. And I talk to them all regularly. Even the school district has been nice about his annual goals and interventions. But things are going to change after this school year. He’ll be going to kindergarten, he’ll be in a mainstream classroom with a teacher who knows little about autism and what it does and doesn’t mean and will probably either underplay or overestimate his challenges. He’ll have new speech and occupational therapists. He'll have some resource teacher as his only special needs contact. Everything changes starting next year. And as he grows, we might well miss – might well have missed, truthfully – something important that needs to be addressed.

We need someone to help us. We just found her. I’ll call her Kay. She works with his current school so she has access to all his records. She’s got years of experience. And she’s smart. So smart. After we met with her Monday, Dan said that was the first time he felt like he was talking to someone who really got Damian and his needs. Not only understood, but knew what to do about it.

Which brings me back to the EEG. One of the things I mentioned to Kay is that Damian is learning to read but not to write. He adamantly refuses what other kids his age seem eager to try. In his (special needs) class, they’ve got these outlines of each of the kids up on the wall. Some of the boys decided to draw their skeletons inside the crayon bodies. Damian thought a brain would be nice too. So they all drew brains and bones. Cute, huh? When I looked at the results later, one of the boys had drawn a very credible skeleton, complete with ribcage
. Another had put a few large bones here and there, not clear on his anatomy maybe, but nicely drawn for a five year old. Damian? Scribbled in the general vicinity. Didn’t even try for straight lines approximating bones.

This child is so bright. He knows all sorts of things about the human body and asks the most perceptive questions in his quest to learn more about how the world works. Today he compared the veins on a leaf (the teacher explained they were to bring nutrients to the leaf) to the blood vessels in his own body. But he can’t draw worth a damn and doesn’t even try to do anything remotely representational. Why?

Kay thinks it may be a short-circuit in his brain. No, that’s not exactly right. She thinks it may be caused by electrical activity in that lobe of his brain, spiking when he tries to access it. Epilepsy is not always those grand mal seizures you hear about, the dramatic twitching-and-losing-consciousness that’s so heart-stopping to witness. Sometimes it’s much milder, something called “absent seizures,” where the person just… goes away for a moment. Stares off into space, not responding to you. Checks out and then comes back. Snap your fingers, he’s gone. Snap again, he’s back. Does Damian do this? Well, kind of, yeah. But it’s never been clear to us whether he’s really gone when he does this or whether he’s simply developed an efficient defense mechanism against sensory overload.

We need to get this test. We need to drive down to San Diego on a Thursday morning, watch as he gets a round spot shaved on the back of his skull and then gets electrodes stuck to his head in at least three places, watch as a technician wraps his head with a turban to keep the electrodes in place and straps a monitor around his waist like a thick belt. We then get to find a way to amuse ourselves for twenty four hours with our head-wrapped monitored child. I’m guessing the rollercoaster at Legoland is out of the question.

It’s not really surprising that we said no two and a half years ago when Dr. Red requested it. But we need it now and Damian’s old enough to understand what’s happening, though we have to decide how much to tell him about the why of it. He’s also much less sensory defensive so it won’t be twenty four hours of pure torture. It can even be an adventure of sorts.

Then why do I feel like crying? Is it because of the ordeal of it? Or is it the results I’m afraid of? If they’re positive for seizure activity, we have to think about medication. Which we will. Because if this is something we can fix with a drug, if it’s a measurable thing that is blocking his ability and the drug would make that huge mountain of a roadblock in the way of his doing well in school, if it could demolish that mountain, don’t we owe it to him to do that?

In a way, that’s the best outcome. I hate-hate-hate the idea of my son on long term medication, but it’s a simple fix. Because if there’s no seizure activity and yet he’s so stuck in his visual/special, visual/motor, hand-eye-coordination problems despite two years of occupational therapy and classroom assistance and everything else, how much can we really help? How will he copy homework off the blackboard, how will he manage the educational gauntlet that’s elementary school, let alone junior high and high school? Vision therapy and more focused floor time sessions? Is that enough, will that work?

Or maybe that’s not really what this lump in my throat, this knot in my chest is about. Maybe I’m back to Mommy Guilt. We looked away from a problem. The problem didn’t go away. Should have would have could have.

Then again, this is when it matters. Now. When he’s learning to write and draw and get ready for kindergarten, for reall school. The other work, the socializing/communicating/sensory integration work he’s had these past years, it’s all been crucial. It’s not like we’ve been wasting his time. But still.

I think it’s none of the above, honestly. I think it’s just this: My kid has a big problem. A new problem, at least new to my awareness. And I don’t want him to have anything wrong with him anymore. I want it to be all better now. I want the problems to get smaller and smaller and fade away altogether. But that’s not going to happen, is it? Or maybe it is, but not yet. Not now. Or maybe it’s not ever. And that makes me cry for him and want to hug him close every chance I get.

We all want to make the world okay for our children. But sometimes that’s harder than it looks, you know?

If you’re not on my notify list, you probably don’t know about this. My new blog. It’s about everything except autism. I’m having a lot of fun with it. And posting every day, too (at least for now). Drop by, say hi. (And yes, I will continue writing here as well. They fill different purposes.)

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