The elephant in the room

Schuyler
Originally uploaded by Citizen Rob.

Schuyler has been flapping lately.

If you don't know what I'm talking about, arm-flapping is a behavior that is generally associated with autism and also with mentally retarded children to a lesser degree. Doctors believe that it is a calming behavior, a way to satisfy a need for constant movement and a compensation for the restrictive nature of their world, a place in which they are inexplicably trapped.

I'm not sure how it applies to Schuyler. She's not autistic. In fact, when you read the descriptions of autistic children, you find that whatever her monster might be, it's not very much like autism at all.

As for The R Word, it is so hard to get an IQ determination on a non-verbal child that it could still be years before we have an answer to that fun possibility, but all indications at this point suggest that Schuyler's delays are mostly communicative and not as a result of any significant retardation.

Nevertheless, the kinds of neurological disorders that kids like Schuyler suffer from are closely related and not very well understood, enough so that we can't discard any connections. Here are a few mostly unrelated facts that, considered together, seem to dance menacingly around the edges of Schuyler's future.

1. Between 80 and 85 percent of kids with Congenital Bilateral Perisylvian Syndrome develop seizures, usually beginning between the ages of six and ten. These seizures are usually fairly serious, sometimes even fatal, although they usually decrease in severity around the age of twenty or so.

2. Approximately 35-40 percent of children with epilepsy also suffer from some degree of mental retardation. Kids with MR and epilepsy have a mortality rate double of that of MR kids without seizures.

3. One in four autistic children will develop seizures.

While not much of this deals with Schuyler directly, it nevertheless brings up a troubling possibility. Could Schuyler's recent bout of flapping indicate the long-dreaded onset of seizures?

We don't talk about these probable future seizures very much. Almost not at all, actually. It's the elephant in the room. But it's a constant fear, one last ugly surprise that her monster is waiting to inflict on her. We have no idea if she'll get them, although the odds are not in her favor, and we have absolutely no way to know when they'll come or how bad they'll be. So our fears take over. Flapping, which might be simply her way of bleeding off some of her limitless energy, become a harbinger of menace.

I love Schuyler, fiercely. She is the joy of my life, even as she's also the sorrow. Happiness and sadness go hand in hand with broken kids, you can't separate them. She's mostly a happy, vibrant little girl, and while she gets frustrated at her situation, we do everything we can to take her burden and her sadness and make it our own. But when the seizures come, if they come, they'll pounce on her and turn her world inside out, and there won't be a goddamned thing we can do but watch it happen.

Sometimes the worst part of Schuyler's monster is the stuff it has yet to spring on her.