I can’t go out, though it’s a Friday night
He dropped his pants, to get his feeling right
We started changing him and he took off my hat
And then I turned on the TV

And that’s about the time he looked away from me
Nobody knows you when you’re A.S.D.
And then still more amused by TV shows
What the hell is A.S.D.?
My friends ask can he act his age
What’s his age again?
What’s his age again?

–          Not the lyrics to “What’s My Age Again?”, not by Blink-182

 

At a recent visit to Dar’s pediatrician, she seemed relatively impressed by Dar’s diet. I may have soft-pedaled how often he scarfs snack cups full of goldfish crackers, teddy grahams, or Cheerios, but it’s also true that he regularly eats bean salads and varieties of fruits. She said, “I see a lot of kids who are only into white food.” I’m sure my face must have looked querulous, because she rushed to explain: “white bread, white cheese, white drinks…that can be the entire diet for a lot of kids his age.” I think I mumbled, “He’s not his age.”

IMG_8062

Saying “he’s not his age” is a little like asking someone if they’re asleep. It’s a bit like an Escher painting, or like seeing writing on the body of a pencil and trying to use that pencil’s eraser to erase it. It’s a contradiction. It makes no sense, even though on some level it makes perfect sense. That’s life with Dar.

The other day, we received in the mail a beautiful 8′”by 10″ glossy of Dar’s school picture, a pic that many of you have been nice enough to “like.” We showed it to him; “who’s that?” Nothing. Every morning I ask him to put his backpack in his cubby at school, emblazoned with his NAME IN BIG LETTERS; most mornings, he tries to stuff it in another cubby. I keep saying “Look at your name, this is your name.” He doesn’t recognize his name or face. What’s his age again?

The words “age appropriate” are a daily rubric in the life of any parent of a six-year-old, from chore decisions to school activities to bouncy castles to nudity to whether or not to expose them to Star Wars. I’d like to tell you that we just factor ourselves out of such decisions, but it’s not quite that easy. Birthday parties get attended, field trips are made. We appreciate everyone’s tolerance even though we are perpetually age-inappropriate, and it’s fatiguing.

When something horrible happens to a person with autism like Avante Oquendo, news reports will often say something like “he had the mentality of a ___ year old.” I’m sure some doctor or specialist could tell Dar’s his “mental” age if I insisted. Most of them, including his pediatrician, are probably too polite. Is he frozen at 1 ½? 2? 2 ½? Does it really make any difference?

About a week ago, a therapist showed up at our house, through the service we’ve had for years, saw Dar and exclaimed “Oh this can’t be Dar!” At first I pulled my querulous face, then I realized she meant his height. He is growing, all right. When I pencil-scratched his doorway to mark that he had turned 6, the increase from 5 hit me like a splash of cold water. I realize that people like that therapist are simply trying to be nice; heck, what have I left them to praise, outside of his clothes? But “he’s getting so big!” just reminds me of his failures to grow in all the ways that matter. (One person I don’t have to worry about is my becoming-famous friend Stephen Falk; he recently reminded me about a vow he took as a kid never to be an adult that says “look how big you’ve grown!” – though in his case that’s about cliché avoidance.)

Welcome to our house, where our Christmas tree has no decorations on the bottom half. Dar follows me around the house as I Dar-proof it. I drill little hook-latches into doors so that he can’t open them. I tie the oven shut. I bungee cord the fridge closed. I lock up anything chemical. I put things on steadily higher and higher shelves. He can now reach the second-highest shelf in our foyer, and now we have to move even more things. Once he grabs something, he tends to finger it until he breaks it. We’re in a race against time until Dar reaches the height of his mother, and we’re losing. (My wife loves clean floors and quiet; sometimes it’s like Dar has been sent to our planet to test her.) The phrase “this is why we can’t have nice things” may as well be tattooed on Dar’s face, or mine.

Dar’s brother, R, seems to have the opposite problem as Dar; his brain grows by leaps and bounds, but his body remains tiny, low-percentage. I see him next to his preschool classmates and I’m aghast at the physical differences, but I guess growing up to be Robert Reich wouldn’t be terrible. (It’s apparently too much to ask that we could raise a typical child.) R is our great salve and balm, helping Dar when he can, as in last week’s post and in the photo above. R inadvertently shows us what we’re missing when it comes to Dar: he draws us animals, he reads full books, he dances, sings, and plays along to full songs, he remembers seemingly meaningless things that happened months ago. As inadvertently, he teaches Dar things. I never saw Dar splash in puddles until he saw his brother do it, and this season Dar has become an inveterate puddle-splasher. Dar always refused hats, but with his brother wearing them without complaint, Dar seems to tolerate them. Were these things going to happen anyway? No way to know, since Dar can’t tell us.

In his own way, Dar is a meditation on the concept of time itself, at least as profound as any thoughts occasioned by, say, Groundhog Day or Interstellar. If time is a stream, Dar is a rock in the middle of the stream, moving at his own geologic pace. Though it’s easy to associate Dar with loss, we might do better to associate him with fixity, with history, with the profound stillness of a 2000-year-old redwood tree or the two-millennia-old Half Dome in Yosemite. Dar is Dar. The cells in his body will regenerate every seven years, as with all of us, but all signs suggest that his damaged cells will be replaced by fresh damaged cells. What does the rock teach the stream that rolls around it? Whatever it is, I’d like to learn it; I wish someone would tattoo it on Dar’s face.

Share this post
FacebookTwitterGoogle+PinterestEmail