Not Broken

"When I was small, I didn't even know that I was a kid with special needs. How did I find out? By other people telling me that I was different from everyone else, and that this was a problem." — Naoki Higashida, The Reason I Jump

My latest fear: I don't want C to grow up thinking something is wrong with him, that he's broken or damaged. But how? He knows something is different. He's used the words "autism" and "ASD" in reference to himself (and that's okay). He knows his twin lives a different life, goes to a different school. He knows he has special people who come to our home to work with him almost daily. He experiences all the doctors appointments, the evaluations. He's contended with being attached to oxygen equipment 24/7.

So what can I do to prevent him from thinking he's broken or damaged?

I'm not sure, but perhaps it starts by not thinking these things myself.

Duality

C is a boy who, at four, can read full sentences, complex words, and short books; if it's 6:51, he can tell you how many minutes until it's 6:58; he's memorized nearly every street in our neighborhood and can represent them with toy train tracks; he knows all the stops on the Q train from here to Brighton Beach; he knows the color of every single NYC subway line; if you ask him what number J is, he'll say "ten" without hesitation, because that's where J falls in the sequence of letters in the alphabet.

But C is also a boy who cannot take a basic hearing test: the doctor prompts and prods, trying to get him to answer the simplest question ("Do you hear a beep now, C?") but C just giggles and wriggles, or spaces out entirely.* And this is just one example of the myriad tasks that fall into the category of Basic Life Skills that completely elude our boy.

It's this duality, more than anything else, that epitomizes the challenge C faces in life. How can someone so bright in so many ways get by if he cannot learn to master the simplest social interactions and situations? Life independence isn't a matter of having a photographic memory or advanced math, spelling, and geography skills, but of navigating a complex web of human relationships.

For my part, I've mostly given up on trying to describe C's autism using signs and symptoms because, taken out of context, they don't really provide an accurate picture. No, I think the example above does it best: C is a boy who can do some simply amazing things, but utterly struggle with things a child half his age can do without the slightest thought.

Can a child learn to master the basic life skills that seem to be in the realm of instinct alone? I don't know, but I certainly hope so.

...

* After the test, my wife asked C how many beeps he heard during the hearing test. "Fifteen," he replied without the slightest hesitation. "Wow," said the doctor, "that's exactly how many there were!" As usual, C can do it, but he has to do it his own way.

Eloping

When I'm in the playground / museum / grocery store / wherever with C, I know that at any moment he might wander off (quite quickly, I might add). Sure, you say, that's what children do: they wander. Every parent has a story about their child disappearing momentarily, and the ensuing panic until reunited. Ah, but there's a difference: with many ASD children, they don't even realize they're lost. They'll just keep moving, following whatever new thing interests them along the way — a shiny car, a sprinkler sputtering down the street, a fence just made for dragging fingers across.

What's worse, however, is that many ASD children are non-verbal, or if they're verbal (like C), won't really know how to answer questions like "Where is your Mommy?" or even, "Are you lost?" In fact, C would probably think the whole situation was, well, kind of funny. And he certainly doesn't know how to approach an adult if lost, let alone how to tell a potentially dangerous adult from one who's not.

We learned early on that eloping — as this tendency to wander is called — is very dangerous for ASD kids. By some measures, half of all children with ASD elope; for ages 4-10, ASD children are nearly four times more likely to elope, and from ages 7-10 the rate is eight times higher than typical kids. This leads to higher rates of serious injury and death; two-thirds of parents whose ASD children have eloped report close calls with traffic injury, and one-third report near-drowning incidents.

Last week's sad news of three ASD children dying in separate incidents after each had eloped reaffirmed our deepest fears: someday, despite how much we watch over him, C could just disappear from us. Would he know he was lost? If so, would he know how to get help? I honestly don't know, but I have my doubts, at least at this point in time.

Then there's the future: an acquaintance recently told me about their 15-year-old niece with autism who frequently gets up in the middle of the night and simply walks out of the house and down the street. Sometimes the family doesn't notice she's gone until the morning. They've added extra locks and other security measures, but even those don't necessarily thwart the efforts of a determined teenager.

So what do we do?

Well, we don't go a lot of places where there's the potential of getting separated from C. And when we go out, we try to stay as close as possible, even when that means getting the "Oh, you must be Helicopter Parents" look from other parents. My wife and I have inadvertently developed facial expressions that communicate things like, "Do you have him in your sights?" or "Can you watch him while I go with M?" or the desperately wide-eyed, "I don't see him…do you?!"

We drill C on our phone numbers and address, all of which he's easily memorized; but when anyone asks him a serious question, he's as likely to answer nonsense as fact, especially if he's agitated or distracted.

And while we do our best, what about other caregivers? What about his occasional field trips with school? What happens when there are 10 or more ASD kids to look after? We just have to put those thoughts out of mind when we can't be there, lest we drive ourselves mad.

We are, however, considering a tracking device. At one point in my life, I would have thought the notion of such a device outlandish, but if C ever does disappear, I'd never forgive myself if I hadn't taken every step possible to get him back as quickly and safely as possible.

Eloping, or wandering, is a concern every parent has, I know. But with a child who doesn't realize he's lost, can't really communicate if found, and with few real survival skills (or even reasonable fear of things like traffic or bodies of water), that dread — like all things touched by autism — is magnified. In the meantime, we'll just keep watching, training, and hoping.

The Best Advice: No One Knows

When the evaluator finished telling us that, yes, C definitely had autism, I asked what this meant for his future. She sighed, said that was a common question, and then offered us the best advice we've received so far: "Don't try to predict where your son will be in ten years, one year, or even a month. No one knows, and anyone who tells you they do is lying. These kids can surprise us, both for the better and the worse."

Seems a million years ago that we received this pearl of wisdom, but lately I've needed to remind myself of it a little more than usual. It helps me get through particularly trying moments, those moments when I wonder, "Will it be this way forever?" or, "What will become of my son?"

No one knows, and there's a sort of paradoxical peace to be found in that mystery.

Fear Itself

Losing one's hair can have its advantages: in my case, it's been accompanied by the understanding that some emotions are mostly useless and often harmful. Here I refer in particular to regret and fear.

As parents of a child on the spectrum, we regret not noticing the signs earlier, or losing our temper, or feeling ashamed. We fear a future of loneliness and despair, of financial ruin, or simply the bullies lying in wait.

But that's no way to live. I try to learn from my regrets and move on quickly. As the Buddhists say, acknowledge the thought like holding onto a balloon momentarily, then let it float away.

As for fear, I can only do so much to control what could or might be, and dwelling in anxiety often means missing all the good that's happening here and now.

I was inspired by this excellent post. Give it a read.