“When was your son first diagnosed?” a young mother asked me in Walgreens last week.
“Oh, let’s see, when he was about eighteen months old.”
“Oh, that must have been heartbreaking,” she remarked, shifting her squirming toddler from one hip to the other.
I didn’t really know how to tell her this, but the fact is I was relieved when we learned Jack had autism. I was actually happy. I know, isn’t that about the weirdest thing to say? But I was.
I felt as though I’d been handed a precious gift, like a nurse had placed a tiny swaddled newborn back in my arms. We could begin again. We had a direction—a purpose. There was a reason why he’d only play with the vacuum cleaner.
“So, how is he now?” she asked as we walked out together, her little boy holding her hand.
“Oh, he’s good. You know, we have our ups and downs.”
Right now, Jack is ten. He’ll be eleven this spring. He weighs nearly 100 pounds, and stands well above my shoulder. He and his older brother, Joey—who will be twelve in March—are in a race to be tallest. Joey’s feet are bigger, but Jack’s legs are longer.
Although he’s the second oldest, he lags in emotional maturity. Each of his younger siblings begin to catch up to him, and for a short while they exist in an almost twin-like space. And then they pass him.
Right now, he’s very close with his sister, Rose. She’s seven. They play a made-up game they call Hair Salon in her room most days after school, and Jack draws up long, complicated schedules for the salon hours and services: hair drying from 3:00 – 3:30, nail polish from 4:00 – 4:10.
Thursday is Waffle Day, with a capital W. By 6:09 in the morning, Jack has a big glass bowl full of waffle batter ready—and a trail of eggs, vegetable oil, and water dripping on the counter. He follows me all over the kitchen whispering waffles waffles today is waffles until I take the waffle iron down from the high shelf and pour in the batter.
Saturday mornings are exactly the same, except Saturday is Pancake Day. With a capital P.
Jack insists on going to the bathroom every single place we go: church, restaurants, Walgreens, the library, the mall, the doctor’s office. He could go twenty-two seconds before we pull into the parking lot for the movies, and as soon as his feet hit the pavement, he tells us, “I have to go. To the bathroom.”
It is maddening.
I feel a certain freedom now that he knows about his diagnosis. Finally, after all these years, I can talk about it openly—not with Joe or my neighbors or the teachers or our doctor, but with Jack himself.
“Uh, Jack? You know how, like on Thanksgiving and during Charlie’s birthday party, the noises are too much for you? That’s called sensory overload. It’s part of autism. Right now, Mommy is having sensory overload because my phone is ringing and the music is too loud.”
(Empathy, obviously, is not always part of autism. At least not Jack’s autism.)
He still does a fair amount of scripting, repeating words and phrases from music and television that have become lodged in his brain.
Just last week he screeched, “Hey FAMILY. Thanks for HAVING MY BACK!” when he realized someone took the last Crescent roll at dinner.
“Do you even know what that means, Jack?” Joey smiled fondly, breaking his roll in half and offering it to his outraged brother.
And now, folks, we’re onto maps. Maps and streets and directions and highways. Because, you know, driving around with him wasn’t annoying enough already, between the radio station and the self-imposed safety rules and the way he barks at me to move the second he sees the light change.
“GO! It now is turned GREEN!”
Now, he begs us to take detours on streets he wants to see. He calls this “exploring”, which is funny to me, because the very definition of exploring is discovering something new, whereas the joy for Jack is affirming the predicted.
“I KNEW this. I knew North Road was for THREE MILES LONG.”
Sometimes driving with him feels like riding with a real-live version of Google Maps.
“Millicent Road. It connects to Warner Street.”
“Millicent? My friend Kristin lives there, Jack. She just had hip surgery, I need to call her.”
But, like Google, Jack has no use for the personal niceties. Instead, he offers the rigid, hard outline; distances and stop signs and u-turns, while I try to fill in the softer, more colorful details. Hopefully, together we sketch the full picture.
“It connects. To Warner Street. Which ends at Belmont Doctor.”
“Wait, what? No, that’s drive, Jack. D-R is short for drive.”
I would not describe my son as particularly, well, happy. You might say he’s intense, or focused. He gets agitated easily and he scowls a lot. It can be trying to live with someone who is in a constant state of distress.
But when he sits beside me in the car and pores over the map on the dashboard, I catch a quick glimpse of–not joy, exactly–but contentment.
He’s working so hard to be more independent, and says things like “I GOT this,” as he races me to the waffle iron, or “I can DO it MYSELF!” when I offered to help him pack his clothes for gym class.
And his very favorite: “I am TEN YEARS OLD!”
He flings that phrase around every time I say no, he can’t go to the bathroom alone in A.C. Moore, or he’s not ready for his own phone.
And although I am enjoying the candor of his diagnosis, I can’t quite bring myself to tell him the real truth; that yes, he is ten years old, but still he is young and naive.
I may never be able to tell him what I’m thinking–that I can’t be sure he won’t burn himself on the stove or let some weirdo near him in the bathroom at the mall or wander out of the playground to find out where the street ends.
But I do admire his determination, and I know it may very well be his ticket out of our basement someday. For now, though, I think I’ll keep the waffle iron high up on the shelf.
Sometimes Jack and I eat lunch together at Chipotle after we do the grocery shopping on Saturday. It’s a nice time for both of us. He is relaxed and he doesn’t have to compete with Henry’s singing or Joey’s jokes. We sit at the cool metal table and munch on chips, and he tells me things.
Last weekend, he looked at me out of the corner of his eye and spoke so quietly I might not have heard him if the restaurant wasn’t mostly empty.
“I guess. You don’t have to change. Your underwear for gym.”
I put my taco down. “Oh, Jack.”
Looking at his downcast eyes, I thought again of the mother in Walgreen’s. Was autism heartbreaking?
Not always. For the most part, it’s loveable and confusing and annoying and real. It is ordinary. But there are moments–nearly startling in their clarity and brilliance–that pierce me deeply.
But it’s not what you might think. It’s not the waffles or that, at ten years old, he thinks it is doctor for drive. It’s not watching him comb and style the hair on a doll. It’s not even the idea that in a few years he may be the youngest in our house, even though birth order places him second out of five.
It’s not the diagnosis itself.
It’s the image in my mind I cannot shake: my ten-year old boy, standing in the crowded, noisy locker room. Undressed, with his arms crossed over his bare chest, glancing down uncertainly at the plastic bag from Hannaford’s, with the waistband of his Gap boxer brief underwear tumbling out.
For this, my heart breaks. It breaks for all of the signals he does and will miss; the social cues for which there are no road map.
As we piled our wrappers and empty cups on a tray, he turned and mumbled, “Don’t forget.”
“Forget what, Jack?”
“To call your friend. For her hip.”
And my heart lifted, in a way that was also startling and brilliant and piercing. In a way that was beautiful.