|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. Shouldnt we be past all this now? Damians come so far, hes on the road to recovery, he has friends and language and an imagination the size of the universe. And yet. Hes not all better.
In a way, the fact that hes grown so much in so many ways has highlighted the arenas where he hasnt progressed in the same way. And thats 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 shouldnt waste time on regrets and I know shes right. Just look at the present, plan for the future, do what you can now.
So. Heres 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. Hes got a sharp eye. (He says Im turning on my sharp eyes now.) But visual-spacial is different. Im 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 outlines 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 Cheris experiment wasnt a fluke.
His floor time team started doing more visual-spacial games with Damian: treasure hunts, the now youre hot/now youre cold game, playing with flashlights in dark rooms. We saw some slight improvement. I think. This is hard to pin down, this stuff. Its 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 pediatricians 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 theyre 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 couldnt 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 dont 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 its necessary, well do it. Of course we will.
First we have to figure out if its necessary, though.
Heres the other thing. We have had no specialist following Damians 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 didnt like much of what she had to say. Instead of pinpointing Damians problems, she seemed to give us a cookie-cutter approach, a one-size-fits-all formula. And many of the particulars didnt 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. Ive since heard that shes done a good job for other parents, but she seriously misread my child and thats made it hard to go back to see her again. She thought he was deaf, for chrissakes!
But thats left us without someone we can trust to oversee his interventions. This hasnt 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 theyre 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. Hell be going to kindergarten, hell be in a mainstream classroom with a teacher who knows little about autism and what it does and doesnt mean and will probably either underplay or overestimate his challenges. Hell 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. Ill call her Kay. She works with his current school so she has access to all his records. Shes got years of experience. And shes 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, theyve 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. Didnt 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 cant draw worth a damn and doesnt even try to do anything remotely representational. Why?
Kay thinks it may be a short-circuit in his brain. No, thats 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 thats so heart-stopping to witness. Sometimes its 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, hes gone. Snap again, hes back. Does Damian do this? Well, kind of, yeah. But its never been clear to us whether hes really gone when he does this or whether hes 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. Im guessing the rollercoaster at Legoland is out of the question.
Its not really surprising that we said no two and a half years ago when Dr. Red requested it. But we need it now and Damians old enough to understand whats happening, though we have to decide how much to tell him about the why of it. Hes also much less sensory defensive so it wont 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 Im afraid of? If theyre 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 its 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, dont we owe it to him to do that?
In a way, thats the best outcome. I hate-hate-hate the idea of my son on long term medication, but its a simple fix. Because if theres no seizure activity and yet hes 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 thats 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 thats not really what this lump in my throat, this knot in my chest is about. Maybe Im back to Mommy Guilt. We looked away from a problem. The problem didnt go away. Should have would have could have.
Then again, this is when it matters. Now. When hes learning to write and draw and get ready for kindergarten, for reall school. The other work, the socializing/communicating/sensory integration work hes had these past years, its all been crucial. Its not like weve been wasting his time. But still.
I think its none of the above, honestly. I think its just this: My kid has a big problem. A new problem, at least new to my awareness. And I dont 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 thats not going to happen, is it? Or maybe it is, but not yet. Not now. Or maybe its 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 thats harder than it looks, you know?
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copyright 2003 Tamar