8.16.2004

Big Picture

When people discuss what it's like to be autistic, they often say it's like viewing life from under water, or being trapped on an alien planet whose inhabitants have no context with which to understand your language, gestures, or needs. What they don't always mention is that it's like that for parents, too. Except we're the ones standing on the shore, screaming and waving and trying to get the mermaid's attention. We're the ones desperately trying to communicate with the resident alien.

You get used to--although never comfortable with--a certain helplessness. This feeling intensifies when your child's behaviors and responses fluctuate or regress--or sometimes even when they improve, because you never know why, or how to maintain whatever set of factors led to the breakthrough. Because no one knows a fucking thing about where autism comes from, and therefore no one can guarantee that pushing button A will give you effect B. There are no clear causes and effects. It's maddening.

What about ABA therapy? you ask. Well, yes, it is a proven aid. For a lot of kids, though not all. Our experience has been that, when it works, its effects are broad, cumulative, and often ephemeral rather than specific, immediate, and permanent. We've got reams of data testifying to all the things Leelo can now do, but if you kick him out into the real world, his skills set fizzles down to one or two abilities, and sometimes even those peter out. The process is a really slow, nerve-wracking bunny hop.

Why does this happen? Again, we don't know. Leelo's lapses and leaps, and his bad days and good days are increasingly unrelated to any treatment, intervention, or condition that we can identify.

The one dependable factor had been that when he is ill, everything goes to shit. Yet this past week, while he was horribly ill, he was initiating interaction like never before, coming up to me several times a day, grabbing my hand, and telling me exactly what he wanted to do. He demanded that the therapists "Play with me!" He formed sentences of unprecedented length, such as "I want to sit in my chair and eat cheesy puffs!"

What to make of this? Folks who follow the DAN protocol know that the doctors have parents obsessing over every possible cognitive or behavioral fluctuation as it relates to diet and supplements, and trying to modify the diet accordingly.

If I put myself in this mindset, then I have to consider that the biggest dietary side effect of being sick has been that he's been unwilling to eat much, and so has been off most of what supplement crap we're still doing. Plus we were out of Lactobaccillus during the weekend and he missed a couple of doses of cod liver oil. Are we overdosing him on something? Is he sensitized to the Lactobaccillus? Is that it? Is it? I'm fucked if I know.

As are a lot of parents. To paraphrase my dear friend MB, there are days when you know not a single thing has changed--not diet, schedule, or well-being--and your child still takes a sharp left turn into loopy-land.

The small, beleaguered rational part of my brain knows that these kids, like all kids, are unpredictable. They go through phases, they have bad days. Whereas someone else's three-year-old might be having a bout of tantrums, I've got a boy who spent the weekend hiding behind a screen of jolly but unintelligible chatter.

I've heard from parents a few years farther down this path that the ups and downs are usually unrelated to anything external, and that we should just hang in there. The progress will come. And I do cling to these thoughts, I do use them to keep me going. Because even though he has entire days of almost-unreachability, there are times when he lets the curtain drop and I get to see what he's really doing, what he's really capable of.

In addition to the verbal whoop-de-do mentioned above, he's started playing differently. He's exploring, figuring things out on his own, without being prompted. He's never done this before. The other night he had an epiphany about playing scales on his toy piano. The notes! They can be played in sequence! He also finally figured out this fucking farm toy that he's had for two years, that I've tried repeatedly to demonstrate, and that I was on the verge of jettisoning. And light switches! They have functions! And they're all over the house! All good.

We also see just how capable he is communicating when he's sick and has no patience. Instead of collapsing in a heap and crying with frustration because he doesn't feel well enough to spend four hours doing tricks, he will tell the therapists "Bye, bye!" by name, grab their arms, and start dragging them towards the door. If they don't get it, he will open the door and reiterate that they are no longer welcome.

Yet he still has weird omissions. Last week he forgot where his shoulders were, and was finding it difficult to do non-prop aided two-step instructions (e.g., turn around and clap your hands). The latter might be because he has hypotonic muscle tone (according to the Stanfford neurologist), but what of the former? Why does it take so long for things to stick without daily reinforcement?

Why why why? Why is he so unpredictable? Last week, when he was extra-fidgety and I thought he was going to have a horrible OT session, he had his best one ever--wearing his audio-therapy headphones for the entire session rather than five minutes, and talking to the therapist rather than having her prompt him. But then he had an extra-crappy speech session afterwards. And then this week, although he seemed more settled, his OT session was horrible.

I've just got to get used to being useless, to explaining that there is no explanation, to answering that there is no answer. I have to tell myself the same things I keep telling Seymour, because if he believes them then maybe I can too, and both of our hearts can stop breaking.

Big picture, I tell him. Don't get bogged down by the details. Look at the data, look at what he can do. Think about how different he is from last year's Leelo. There are kids who never even get to where he is. He's three. Three-year-olds are as changeable as weathercocks. He's about to go into preschool, and that's the point at which your co-worker's nephew completely blossomed. We're doing what we know works. He's doing great.

Even though we don't really know why.

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