This metaphor is not intended to be a comment on my housekeeping. If it were a comment on my housekeeping, every few weeks the momma plankton would rouse from her radioactive torpor and scream OH MY GOD THIS PLACE IS A FUCKING SHITHOLE and then she would flail around and frantically clean the runoff pond for sixteen straight hours and then collapse hollow-eyed into a bowl of ice cream and wine for five weeks while the pond sludge and contaminated fungus slowly crept up the walls again. And then she would repeat the whole thing, except maybe crying more.
In fact, it’s meant to be a comment on the toxicity of our gene pool, my husband’s and mine. On the one hand, it’s an awesome little pool. Our kids are, to me, living proof that people are greater than the sum of their parts, because while my husband and I are not spectacular-looking (I don’t mean we’re disfigured or covered in warts, just that we’re on the regular-to-mildly-strange end of the looks spectrum) our kids are ginger-headed alabaster-skinned luminous-eyed knockouts, and every so often I look at them and think, wow. If only I could have looked like that in middle school.
Our oldest son has Asperger’s, though I think that diagnosis is in the process of downshifting a bit to the regular old autism instead of the fancy kind. That’s the thing about diagnoses on the autism spectrum – you need to re-evaluate every few years to see where you are, and what has changed. Some things about him fit classic Asperger’s, which is basically just high-functioning autism. He is largely incapable of normal social interaction, for example, and can’t read people’s emotions, faces, or tones of voice. But then there are other things that are more like classic non-Asperger’s autism: there are cognitive deficits, and neuromotor difficulties. In many ways all this was easier when he was younger, and the parameters of strange behavior broader. Now that he’s 11, he’s achingly different from your average fifth grader, and increasingly in his own world, locked serenely away. This is not some tragic situation; he is who he is, which is a marvelously complex and unique little man, and I wouldn’t want him different from what he is.
And two weeks ago, we found out our seven-year-old daughter has severe Tourette’s.
Mainly what I feel is guilt. Maybe Don and I should have dated more normals? Maybe we should have exchanged neurological profiles on the first date, or the second? Because probably at some point he should have said to me, You know I have Asperger’s, right? And I should have said, funny that, because turns out I have moderate Tourette’s! And we both could have laughed and laughed, and then gone on to find people whose nice normal genes would have mitigated the neuro-toxicity of ours.
Only I can’t help but feel that the nice normals we probably should have found would have been a bit boring. And I would have missed, well, my whole life really, because Don and I have been together since I was 21 and I don’t remember the knack of being with other people on account of loving this one so long. Also, any reasonable normal person would have divorced my ass years ago, so I can’t feel any wistfulness about our marriage, inappropriate or otherwise.
See, anyone can have a child with a disability. No one judges you. People sympathize. You are enveloped in an aura of Isn’t-She-Brave-ness. But two children? I keep hearing this Lady Bracknell-like voice in my head: One child with a neurological condition is a misfortune, my dear, but two begins to look like carelessness.
Anyway, the Tourette’s. If your only picture of Tourette’s is the deranged homeless man in the ER spitting and cursing, you’re not going to be able to understand my daughter. Not that she doesn’t do her fair share of spitting and cursing, but none of it (sadly) is under the influence of Tourette’s. Her condition manifests as spasmodic gestures, mainly flapping and twisting hand motions – intense and very noticeable tics lasting maybe 10-15 seconds. Her hand gestures are accompanied by a soft, sing-song, tuneless humming sound. The interval between tic episodes varies, and during the school day she can work really hard to suppress the urge, but even then she has to tic every five minutes or so. At home, it’s more like every five seconds, particularly if she’s relaxed and happy. It takes enormous concentration and effort not to tic. It’s kind of like keeping yourself from going to the bathroom when you really need to – yes, you can do it, but it’s uncomfortable, and there’s going to come a point when you can’t hold it anymore. It’s that kind of unsuppressable urge.
I sent an e-mail to the special education co-ordinator at her school as soon as we got the diagnosis, just to keep her in the loop, not because there are any special accommodations or anything like that. Kids with Tourette’s often have ADHD, and in her case I think that’s definitely what we’re looking at—we’re talking about a kid who vibrates when she sits, being still is such an immense effort. So a few days later, I see this woman, the special ed co-ordinator, in the hall.
Oh my God, she says, gripping my arm. I was so sorry to hear about your daughter.
And I’m thinking, uh oh. She’s confusing me with some other mother who wrote her about her kid’s terminal inoperable brain cancer. Because, okay, Tourette’s is maybe not something you would wish on yourself, and it can be a pain in the ass to manage and there will always be douchebags who think you’re weird, but come on. A life-threatening situation this is not.
I forget exactly what I said, though I do recall telling her that no, really, it was fine, having a diagnosis and a plan of action was a good thing, and we’re not afraid of Tourette’s, since I have it too. I do remember the flicker of horror that crossed her face at that—like maybe I was going to start seizing and spitting right there in the hallway. Totally should have done that. Damn it, why do I never think of these things until later?
I got an e-mail from her last week, talking about my daughter's turrets. Look, I don’t get impatient with anyone for being a bad speller. Okay, that was a lie, I get impatient with everyone for being a bad speller. But my point is, I’m willing to see how this was an understandable error for most people to make. It’s not like the word’s phonetic, unless you happen to know French. (Come to think of it, it’s pretty amusing that this disorder was diagnosed by and named after a Frenchman. Maybe the French were just looking for an excuse for all their rude hand gestures at Americans. No no, eet eez a disease, I swear eet! Eet eez called. . . I have ze Tourette’s, yes, zat eez eet! Sacre bleu, zere eet goes again!) But for someone who spends their career managing and accommodating children’s disabilities? In reply to an email in which I had actually spelled it for her? Twice?
As I write this, I’m wrestling my 6-month-old’s sweaty sleepy body as I try to type around, under, on top of, through, and beside his little octopus body. He’s very much in the skin=oxygen phase right now, because he totally believes that if he is not on a human body AT ALL TIMES, his lungs will collapse. I am trying to convince him otherwise. He is a skeptic.
And maybe part of me is trying to pretend like, yeah, it’s completely normal for a 6-month-old baby to be incapable of sleeping in a crib or otherwise separated from another person. It’s completely normal for his separation anxiety to be so profound that I cannot leave him, ever, for any reason. It’s completely normal for his terrified, angry screams to resound for half an hour, an hour, two hours. Completely normal. There’s nothing wrong. Right? Right?
He has surgery in a few weeks for Duane’s Syndrome, which is a neurological condition in which the neurons do not attach to the outer muscle of one of the eyes, meaning the muscle is there, but the eye can’t respond or move as directed. It’s like the muscle’s not plugged in. Turns out it can’t be fixed; for all our technical prowess with some things, this fix is not something we can do. We can’t make nerve talk to muscle again, at least not in this region. So his surgery will be largely cosmetic, though it might help him with range of vision. Part of the muscle on the other side of his eyeball will be snipped to allow a more central range of motion, if I understand it right. It’s another highly heritable neurological condition, and yeah, you see it in autistic kids more than in the general population, and again, I’m not thinking about that. What will my life look like, when it's three kids with serious neurological problems? Don't think about that. There’s nothing wrong. Nothing wrong. Right?
On days like this, I feel like that drippy special ed woman didn’t get it wrong after all. It feels like I am living in a castle under siege, like there is some neurological evil stalking my children and I have to protect them. Except of course, I can’t—the thing lying in wait for them is coiled in their own genes, and all my defenses, all my turrets and moats and drawbridges, are useless. It lurks inside of them. I’m like the woman who worries about strangers snatching her children and builds a seven-foot-high fence around her garden, and all the while they’re being molested by their piano teacher or something. The danger was inside the whole time.
We always want danger to be displaced onto a mysterious, lethal, comfortingly alien other. We don’t want to think that true danger laughs at our Maginot lines, and quietly skirts all our defenses. We don’t want to think that we brought the danger into the house—that it’s the piano teacher we hired, the priest we trusted, the genes we gave our children.