March 8, 2006

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.

12 comments:

Billie said...

I can totally relate to where you are coming from. Thanks for putting some words to my constant happy/sad/loving/sick-with-worry existence.
Billie

grandefille said...

Flapping, which might be simply her way of bleeding off some of her limitless energy ...

This is what I pray for, Rob. That she's just being rambunctious. As she deserves to be!

I can't comprehend what you and Julie must feel like, with every day bringing something seemingly innocuous that can frighten you to pieces. All I can do is send you all our love and support, from a group of strangers in Tennessee who ask every day that the Rum-Huds continue to live your lives in love and peace and good health.

Kisses from all of us, especially Delaney and me.

Anonymous said...

Have you noticed if the flapping has any pattern to it? Like if she's been frustrated with trying to communicate, then she flaps? I'm wondering if maybe the flapping is an outlet for a breakdown of communication, kind of like my kids getting violent in toddlerhood when they have *some* words, but not enough to adequately get their point across.

I'm basically talking out my ass here though :) It was just something that came to mind.

tiff said...

Our older son has excess motion issues in conjunction with weak fine motor skillz, and he's "normal" (whatever that means). It mostly happens when he's thinking hard about something (then commence with the rapid tongue motions) or just has to burn off some steam (then commence with the flapping or knee bobbing or falling off the couch).
I hope and pray that Schulyer's flapping is simply her attempt at flight.

TB said...

I don't have a child like Schuyler, but I have two sisters and a nephew with NF - another nasty neurological disorder in which the severity and symptoms can take years to manifest.

I think you guys handle this so well, all things considered. It would be so easy to live in constant fear of seizures, or whatever is next. It would be so easy to wallow and you really never seem to do that.

ginger said...

I'm also curious about whether there's a pattern. I know a boy who's about to enter teenhood who still exhibits flapping. Mostly, it's when he's excited or nervous, but there are other times, too. He's done it all his life, and there's no sign of mental retardation, autism, etc. It's just his way, I guess, and I hope it's just Schuyler's, too.

CameraDawktor said...

God, we all have our own monsters, don't we? If only we all had Daddy's to fight for us and care that our monsters were terrible...

adventures in disaster said...

I know the thought of seizures is terrifying but try to remember we have come a long long way with seizure control. We understand the medications better and we have the history of use and dosage.
I have a chronic disabling condition and my rule is be prepared, I research the hell out of what the next step is. I check out all the drugs. I want to be educated and ready.
I believe in knowing my enemy. If the idea of seizures scares you then it is time you researched them and sat down with the doc and talked about how they would be treated.
Seizures aren't all that scary when you have a plan in place...when you feel out of control is when the fear gets you.
Millions of people have seizure disorders..they still live wonderful lives..don't let your fear make you give up.
You need a good CPR class that includes seizure care so you can feel competent.

Good drugs and educated competent ready parents are all she needs to manage..she will be fine.
I wouldn't worry about the flapping..way too many little ones flap..she could have seen it from another classmate tried it out and found it soothing..if I was judged on all my tics? yeah..as long as she is still willingly engaged with the world I would allow a little random flapping.

00goddess said...

I flapped arms, not hands, when I was a kid. It was a physical response to the frustrations of being an abused and neglected child who did not fit in at all.

Into my early 20s, I would snap my fingers when I could not remember something, like when I misplaced an item or had a moment of mild aphasia.

Anyway, on the mental front, I have turned out pretty well, managing PTSD and all that, genius IQ, happy long-term relationship, etc. So don't let Schuyler's flapping worry you. You know she is not mentally deficient, and don't worry about other things until and unless you must.

Anonymous said...

My 11 year old (12 this Fri)son Scott has Perisylvian Syndrome and was diagnosed at about 2 years of age. 6 months ago he started to have seizures which scared the heck right out of me, but with hard work with our neurologist and pediatrician (had to trial 3 different seizure drugs before finding a fit)his life is getting back on track, and we are starting to see our happy (mostly) little boy again. Scott doesn't arm flap but he head bangs, anyone else with this problem? If so any solutions?

Anonymous said...

Hi, my son has flapped his arms since
he was 1, and we were told it is a
mannerism. I was always worried about
it, and now at almost 4 he has morphed
it into a convulsive jerking of the
arms and torso, where his whole body
tenses up. He has been diagnosed to be
on the autism spectrum, very border
line though. However, I was told that
as he becomes more proficient in
speech he can express himself better and this will reduce. That has not
happened. Even though his speech is
fine and he is very social and all
that, he does this ALL THE TIME.
I am so worried and I am reading
up about other possible disorders
and seizures (that's how I found
this).

Annie D said...

My son flaps his arms too. The doctors haven't had any real answers for this yet. Just bullshit.