Yesterday I got a text from a friend asking if I had any suggestions for gift ideas for my son, Nick, whose birthday is today. “No pressure,” the text read—she meant, of course, that there was no hurry to respond. But the words “no pressure” struck a nerve, and I couldn’t help a bit of laugh-crying.
Nick has no idea that today is his sixth birthday. After dinner, our family will light candles and stick them into a Carvel cake, we’ll sing Nick the “Happy Birthday” song, and we’ll even give him a present or two to unwrap. But he won’t understand any of it; he doesn’t understand that he’s turning a new age or have any concept of what age—or time—is. In fact, it’s unlikely that he will *ever* understand the concepts of “age,” “time,” or “birthday.”
Nick is autistic—and Nick’s brand of autism, unlike some you may have encountered, is not a “superpower.” It’s not a “gift from God” and it’s not a “beautiful song” to which the rest of us just don’t know the melody. It’s a crippling, life-altering disability that prevents Nick from speaking or *understanding most spoken or written language*. He does understand a few things—concrete nouns, mostly. And a few action verbs, like “run” and “jump.” But that’s where his level of comprehension ends. In the bad old days of the 80s, we would have called what Nick has the “R” word. Now we call it severe intellectual disability (ID), coupled with severe or profound autism.
But today is Nick’s birthday and this sweet, beautiful child deserves to be celebrated. We don’t celebrate Nick in the typical ways—“typical” things are generally wasted on this very atypical kid. So today, I’m celebrating my mysterious marvel of a little man by starting a blog in his honor.
A blog was the best gift I could think of for Nick because what Nick needs more than anything is to be better *understood*. He needs people to understand his severe disability so that they can be more inclusive, more accommodating of him and his strange and unusual ways when he is out and about in the world. He needs people to look the other way when he unexpectedly pulls down his pants to pee in a bush in the playground. He needs people to occasionally let him touch their bikes or spin the wheels of their scooters when he finds these items lying around in the park. He needs people to let him “cry it out” when he’s upset about not getting his way—and to understand that his “crying it out” will be *loud* because he’s a big, 50 pound kid, with a set of big, 50-pound-kid lungs to match.
There’s so much that Nick needs if we’re to have any hope of continuing to get him “out in the community.” And lord knows, I want him out in the community! It will benefit Nick *and* the people who meet him (I promise it really will!). But in order to get him out there, we’re gonna need just a twinge more understanding about severe autism and what it looks like. Because it’s very different from what most people understand “autism” to be.
So here we are. I’m starting this blog to shine a spotlight on severe autism (as many others have done and I hope will continue to do). I’ll write the proper intro soon, but for today, I just wanted to say a quick word about turning six. Last year, on Nick’s 5th birthday, I wrote something about acceptance. I droned on about how, although I’d never give up on my child, I had learned to accept him for who he was. I said that I knew his autism was here to stay. I acknowledged that statistically speaking, any progress he made after age 5 was likely to be minimal. I’ve always found it dangerous to have too much hope.
But the truth is I do have hope—and unfortunately, a lot of that hope is riding on this year. I’ve spoken with so many parents of kids with severe autism who have said that their kids’ real progress—whatever that looked like for them—happened between the ages of 6 and 7. Or at least *started* between the ages of 6 and 7. I’ve heard this story so many times, I’ve lost count. There are kids who spoke their first word at 6, or who understood their first “Wh” question at 6.5. There are kids who got out of diapers or finally slept through the night just around 7. But there are also kids who didn’t do these things. Ever. There are people who still can’t answer a “Wh” question (i.e., “What’s your name?” or “Where’s the ball?”) as adults, and plenty of people with severe autism never toilet train or sleep through the night.
And nobody knows what accounts for the difference. We know that “early intervention” (starting therapies and services as young as possible) helps a lot, but all the early intervention in the world still won’t get some kids to progress. So much of the “autism journey” is just a waiting game—at least at the beginning. Will Nick be one of those kids who turns a corner at 6 or 7? Will he start piecing together sentences or be able to answer—and understand—questions like, “Where do you live?” Maybe. Or maybe not. I wish I could say I didn’t care. I wish I could say that I’ve achieved complete acceptance and am 100% at peace with having a child who can’t communicate. I wish I could say that I’m not watching Nick’s every waking moment (and some sleeping moments) like a deranged hawk for any glimmer of change or hint of progress. But yeah, no pressure.