Scripts, and Silence

One year ago, my beloved twins were diagnosed with autism. I spent the next year writing my feelings and reactions, with an eye to eventually sharing them. This is the second essay in that series. The first is here.

Among the worst things one can say to a fresh-born parent of a special needs child is a most common encouragement: “God gives this job only to special people.”

Or, perhaps, “the Lord gives you nothing more than you can handle.” To the first variant, there’s immediate offense — well, I think, I guess I’m special. It’s as if I’ve won the lottery, rather than received the news of my son’s debilitating genetic condition.

To the second, there’s a hint of blame — I am special, and strong. That is why God chose this for me, and for my son.

I would much rather not be strong. Spare my son.

We fear accepting the bare truth, both us parents and all bystanders. Denial is grief, and no less so when it’s fleetingly gripped by feebly observant neighbors and relatives rather than parents. “They’re special,” “you’re special,” “they’ll just understand the world differently,” and my personal favorite, “you’re so lucky.”

(The last one, if it seemed insensitive, is one to which I’m cautiously holding on. It came from a friend, one who works with special needs children, and one who, by all accounts, knows exactly about which she speaks. I don’t know what she meant. I hope one day I do.)

The truth is, however, my children won’t understand the world differently — they simply won’t understand. They are not lucky, nor special, nor blessed. They are cursed. It is my job, as a parent, to help them overcome that curse as best they can, with the final, terrible knowledge that, as close as they may get, they simply won’t.

They simply won’t. They will lose this race. My only and best hope is to make it as close as possible. My mind wanders to long-passed calculus classes, and asymptotes, and approaching zero, ever closer, but never there. It’s not a bad description for teaching a special needs child. It’s also an easy rebuke to those who simply call my twins “special.”

But I should be fair — I wouldn’t know what the hell to say, either. I didn’t, in fact — the news left me speechless. And while I remained speechless, I’ve been in many a situation where, not knowing what to say, I blurted out the first and stupidest helpful thing I could think of, comforted in simply having broken the silence.

Part of me knows I shouldn’t judge others for their reactions. Most of our daily interactions are scripted, anyway, so it shouldn’t be a surprise that going off-script renders people scrambling for an acceptable pathway back to any script available. Besides, given that most of the people I know are simply acquaintances, and given that acquaintances generally interact through set and scripted conversations, the fact that people scramble for a script is a sign, if nothing else, that even my acquaintances care about me. And I probably shouldn’t sneer at that.

Part of me, though, wants to punch them.

I haven’t read my Bible in a long time. But I do remember my favorite part of the Book of Job, where, after innumerable sorrows, Job sits in mourning, and is found by three friends, who, before they become the story’s antagonists, sit with him in silence for no less than a full week — seven days and nights of watching, feeling, and sharing grief. In my angrier moments, I imagine the scripted responses of so many are an attempt to avoid that silence — the subconscious refusal to descend into the dark. I sit there, and angrily justify my sitting, and callously demand to be alone, as if my anger justified remaining in darkness any more than their discomfort justified fleeing from it.

I’m sad. There’s a lot of complicated ways to say it.

There’s a few reactions in this period that stick with me. Most are with my family — my mother pulls her car over to the side of the road, and weeps. My father is genuinely grateful that his grandson preferred his company. My boss — by far the best visual reaction I saw — looked as if he had been violently punched in the face. He had been waiting for an answer, after the final meeting: “both of them,” I said, and he groaned, and sighed, and dropped his shoulders as if he’d been tied to a millstone. And then hugged me, in front of all his bosses and subordinates, for a long time. News of autism trumps corporate meetings.

Plenty of people are sad with me. But other than being sad, I have a hard time reconciling my feelings. Fact is, the refrain parents usually give their children — “you’re perfect just the way you are” — is as much a con as it is a truth. Kids need confidence, and few things give it more than the simple assertion that they already deserve it, and have it. It’s that same confidence that will later push them to be better — ironic, at least, given that we tell our kids that they don’t need to change in order to slowly push them to change.

Truth is, we all want our kids to change, but we imagine the change to be concurrent with their nature — window-dressing, perhaps, but not a wholesale, foundational genetic change. Because…damn.

Because that’s like wanting another kid.

And that’s…that’s just betrayal. Abandonment. Because, what kind of a parent does that?

This part is hard. I do. I want it.

It’s a difficult pronouncement, but it’s true — I wish my kids were different. I wish they were normal. I wish they spoke. I wish they weren’t autistic. I wish to god I could hear the happy illogic of three-year-olds debating amongst themselves, rather than the silence and Curious George monkey noises I hear for hours on end. I want them to be different. I’d give my arms and legs for it.
And yet, I love them. I can’t reconcile it — I love them, and pick them up, and hug and kiss them, and wish simultaneously for them to not be as they are, but to be some imagined child based on an approximation of their current personality.

I wish they would change. I wish they could. I hate that they can’t. I love them just the way they are.

There’s no logic to this. One reason, I suppose, for quitting all encouragements that begin with, “you’re special.” I’m not. I’m in love. And that is never logical, or reasonable.

But it’s usually, and often, painful.