Everything here is just like a simile, and almost completely alliterative.

Sunday, January 22, 2012

The View from the Turrets



My family is a little bit like those plankton that live in the warm runoff waters from the nuclear power plant: the water is so radioactive it’ll melt your skin, and the plankton are glowing so bright they can be seen from Mars, but as far as they’re concerned, it’s home and it’s just great.

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.

So yeah, they look like little movie stars. And inside all that adorableness, apparently, there is some seriously messed-up neurological shit going on.

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.

But it’s still a hard road. I don’t like being around boys his age that much, because I don’t want to catch myself in inappropriate wistfulness, thinking, “Wouldn’t it be nice if. . .” Fortunately, being around boys his age is a really infrequent event, because he doesn’t have friends. This is not a sad thing in the way you or I would think of it. He doesn’t want or need that kind of company, and is fine with occasional distant interaction with his peers. The girls in his class look after him, so God bless fifth grade girls and their desire to look after short furry things. Between them and his sisters at home, the women in his world weave a net to cradle him.

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?



Monsieur de la Tourette, who did not in fact have Tourette's.

Yeah yeah, I know, dial back the outraged schoolmarm.

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.


The turrets in the picture at the top of this post are from Castle Caernarfon in North Wales, built by Edward I, Hammer of the Scots, Pulverizer of the Welsh, who was very not at all a nice guy. He built this castle as a vantage point for his continued pulverization of Wales, and his son Edward II was born in it. Young Edward was a nice guy, and while his brutal dickwad of a dad got to die in his bed, Edward II was murdered for, basically, being gay. The henchmen of the rebel nobles (who included his wife) rammed a red-hot poker up his rectum until he died in agony, so as far as Edward was concerned, it most emphatically did not Get Better.

The thing is, Edward's gayness was assumed to be some hideous defect, some incredible moral and indeed physical debilitation, instead of what we know it to be today—a regularly occurring trait somewhat like left-handedness, and with about as much moral consequence. One generation's abomination is the next generation's ho-hum. One day's unbearable is the next day's condition of normal life. The view from the turrets never changes, but our ways of seeing do.

Spelling is still important, though. Maybe I'll write that woman an e-mail and CAPSLOCK the word this time.
(This pic is for Lizzie, who was irritated she was unmentioned in this post. Don't worry sweetie, I'm sure your neurological condition is coming.)


4 comments:

  1. Spelling is indeed important, as you've pointed out previously when discussing FB posts.

    Your children are wonderful, amazing, and I love them like I love my own. I feel guilty that I've taken my own crib-sleeping, formula-fed kids' sturdy healthfulness for granted when you've put so much more effort into raising children who got to start out with more than six weeks of maternity leave before getting tossed into a daycare center.


    You are the most amazing mother, other than my own, that I've ever known, and it's obvious that your beautiful children have reaped the benefits of that. In summation, I'd like to say that you rock my ever-loving world, and I'm one of the luckiest people on earth for being so close to them.

    So maybe your older son doesn't interact the same way that most boys his age do. I distinctly remember being at your house one night after receiving some sad news, and having him sit across from me and asking me, sincerely, what it was that had made me so upset. I have had moments with your younger daughter when I wanted nothing more than to hold on to her and try to make her understand that I love her as much as Sophia does. I have stalked and hoarded your baby from before he was even born. And I have looked and you and your husband with such admiration and awe at the love you share without judgment or hesitation, real true love.

    So, to me, your family is just about as fantastic as it gets.

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  2. Beautifully written post. You have a very healthy perspective on life for being so neurologically dysfunctional. :) I don't recall any weirdness when we were kids. You were simply my best friend who despite being annoyingly smart, insisted on being Farah when we played Charlie's Angels. BTW you also had beautiful alabaster skin.
    Thank you for sharing your family and life experiences. I'm enjoying getting to know you again. :)

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  3. BECAUSE WHO WOULD NOT INSIST ON FARRAH?? Honestly. You're just mad that on top of that, Blake always got to be Kate Jackson, and you were stuck playing The Other Chick. :)

    As for not seeing weirdness, I was able to mask my Tourette's pretty well, and I worked hard at holding all tics in until I was alone behind a preferably locked door. I was so profoundly ashamed, and that's been my thing about Eleanor, is not wanting her to feel that shame.

    It's so great to see you online more and more these days -- you've been so quiet on facebook! Thank you for taking the time to read this. It means more than you can know that you did.

    Man. Can we just be six again? I think a good round of Charlie's Angels in the back yard would set me right up.

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  4. I wouldn't have your ginger-headed crew any other neurological way. I guess my perspective on this is warped, a bit, because i am drenchingly in love with your oldest son and have been ever since before he could walk, but I think all that atypicality has some genius and magic mixed in.

    And I think you'll be lucky if Eleanor doesn't spell it that way forever. :)

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