The other day, Jack and I had to run into the grocery store for a couple of things. We needed tortillas for dinner, milk, and—according to Jack—yellow apples.
He’ll only eat them if they’re yellow. Yellow apples—again, according to Jack—are the best apples in the world.
We talk a lot about yellow apples. Like a lot a lot a lot a lot yellow apples they are for the best they have to be yellow buy them yellow not red not green but yellow.
During the short drive to the store, our conversation went something like this:
“We need. The yellow apples.”
“Yep, yellow. I’m on it.”
“You can’t be on an apple. They are for too small.”
“Yes, buddy. Yellow. I am on—I will buy them,” I said, catching myself before I made the same literal mistake again.
It was dark out already, thanks to the cruelty of daylight savings time, and I was tired. I still had to pick Rose up from dance and drive Charlie to football and fix dinner and make Henry take a bath and Joe and I had argued earlier that day and my nerves felt all jangly. I didn’t want to talk about apples anymore.
“Mom. For how to. Feel better do you.”
“What do you mean, Jack?”
“How do I feel better or how do you feel better?”
“To feel better.”
“Is something wrong? Are you hurt?” All of a sudden I felt nervous.
“Not to hurt.”
“How do I feel better?”
“TELL ME, Jack. What are you saying?”
“Is something hurting you?”
“Yellow. They have to be yellow.”
“I KNOW, Jack! You are literally driving me insane.”
“YOU ARE LITERALLY DRIVING ME INSANE!” he echoed at the top of his lungs as we pulled into the parking lot.
We walked into the store together, bickering and griping, and I couldn’t help myself. I pictured a lifetime tethered to this boy, a lifetime of trips to the grocery store niggling about apples.
Lately I’ve noticed quite a few websites proclaiming to be “Asperger Experts” and “Autism Specialists.” These are funny to me. Funny-funny-funny.
Yet not so funny.
I live with autism twenty-seven hours a day, three hundred and sixty-five days a year.
Jack lives with autism thirty-two hours a day, three hundred and sixty-five days a year.
According to common core math, that’s exactly, 1,239,708 hours of autism experience between the two of us.
Yet the spectrum disorder takes us both by surprise every single day. We are not experts. In fact, we are the opposite of experts, whatever that is.
(Amateurs. That’s the word I was looking for. We are autism amateurs.)
Maybe I could find an expert to tell me why, after making waffles every single Thursday for over two years, Jack stopped altogether. He won’t touch a waffle. He won’t look at a waffle. For this boy, waffles have ceased to exist.
Or how he can barely lift his head to say hello to his grandmother, but when his brother, Joey, walked in on Saturday morning—tousled and disheveled from a sleepover—he suggested, “Let us. Offer for Joey a pancake.”
I could use a specialist to sit next to me at the kitchen counter while I watch Jack mix his new favorite pancake batter and tell me what to do when I hear him whisper to himself, “I am. Lonely. Lonely. Lonely.”
And when I ask him–in a voice that I am struggling to keep even and still—why he feels lonely, should we have a friend over, or play a game together, and he clamps his hands over his ears and says no more talking about I can’t for talk about, well, I could really use an expert to help me decode his mysterious communication and the pain he’s hiding.
From the moment Jack was born, I have loved autism for the same reasons I hate it: it is whimsical and slippery and erratic. It equal parts delights and depresses me.
Over the past few years, I’ve had the great fortune to meet two brilliant, remarkable psychologists—the closest I’ve ever come to meeting someone who is an expert in this field. One of them explained to me that people are drawn to those on the spectrum because it challenges all of our assumptions about human behavior.
When she said this, I thought about all the assumptions I’d made about my son and his autism in the past eleven years.
When he was first born, I assumed I was the best person for this job.
Yet when he was a toddler, I felt so ill-equipped to handle his tantrums and his whining and his wandering that I was grateful to hand him over to an integrated preschool for a couple of hours. Some days, I could not wait for school to start.
I assumed the tantrums he threw were because he was difficult and hard to please and stubborn.
I assumed he didn’t sleep because he didn’t want to sleep.
I assumed he would outgrow it.
I assumed that the invisible umbilical cord binding us together would eventually stretch until it—what? Not snapped, exactly, but dissolved. Disappeared, to some degree, leaving us to buy whichever apples we prefer.
I assumed I would be a good mother—not a great mother, but certainly not the kind of mother who would scream at her special-needs son that he is driving her insane in the parking lot of the grocery store.
I expected the pain to ease.
I assumed we would be eating waffles on Thursday mornings every single week for the rest of eternity. That’s why I bought a giant bag of waffle mix from Costco.
I thought I didn’t know how to love unconditionally.
I assumed it would be harder for me than it is for him, because I didn’t think he processed loss, and regret, and loneliness. I thought he would never understand what he’d been denied in the complicated genetic battle that landed him on the spectrum’s sloping bell curve.
I assumed I wasn’t the best person for this job.
I assumed that every day autism presented me with a choice: to feel frustrated or help him make progress. Now I know it is okay to be feel both. They are mutually exclusive, yet oddly concordant, even necessary together.
Some days, they are linear—other times, they leapfrog over one another—anger and growth, irritation and enrichment.
And when it comes to this boy, no conversation should go unfinished. No matter how painstaking and irritating and hard it is, I still have to tease out the words.
Because after a million hours with autism, I know sometimes progress tiptoes in like a mouse after the tiger’s fierce roar. When this happens, my satisfaction—my joy—is always tempered and bittersweet, like tepid coffee or bacon that has been burned.
I am hungry for it, but it never tastes as good as I’d hoped.
“Hey, Jack? Remember last night in the car? What did you mean about feeling better?”
“I am PACKING. MY SNACK NOW. The BUS is for in six minutes.”
“I know. Can you put it down? And answer me? Do you feel bad?”
“You do? When?”
“Like when, buddy?”
“You feel bad in school? Why?”
“In school. I cry on the inside. Because for I am misssing you.”
And he shoved in the big yellow apple he’d chosen the day before, zipped up his backpack, and walked out the door.