Last week I had to bring Jack for an appointment at the eye doctor.
This is fun for a few reasons. I get a long stretch of time alone with my son. We have meaningful conversations and sing out loud together to our favorite songs on the radio and try new restaurants for fun, tasty lunches.
This is not fun for a few reasons; I get to spend a long stretch of alone time with my son and the only thing we really talk about is whether or not spiders in Brazil are deadly and when Carol Burnett was born. If I’m really lucky we talk about Hitler. Jack controls the radio and freaks out if the station has static. He insists we eat at a run-down Bertucci’s off the highway and gets huffy if I don’t order the same pepperoni pizza he does.
By the time we reached the exam room, we’d been in the car for sixty-seven minutes and the waiting room for fourteen. Jack had mentioned Bertucci’s approximately thirty-seven times, and while we waited for the doctor he badgered me for my phone, snatching at my purse and stomping his feet.
“I want to download. The song by Kanie West.”
“It’s Kan-ye Jack. And no, no more downloads today.”
“It’s not Kanye. It is Kan-ee.”
“It is not—“
In the middle of our hissing match about Kim Kardashian’s husband, the teeniest doctor I have ever seen bustled in. I’m talking small. When he stood next to Jack I noticed Jack’s feet were bigger.
He also had on really nice pants. Rich-looking. Ironed, with a crease.
(You might find it weird that I noticed his pants, but a while ago I stopped into my husband Joe’s office and noticed his pants looked kind of worn out, so I’d made a mental note to do some shopping for him.
I’m talking about a man who wore mismatched shoes for an entire year because he bought them by mistake at Marshall’s and he didn’t feel like going back and returning them, so you can see how I have to keep on top of things like this.
In his defense—the one he constructed for himself, obviously—the shoes were very similar in style and color. But still. A whole year.)
“Hi, hi, I’m Dr. W.”
“Uh, hi. I’m Carrie, and this is my son Jack.”
[insert moment’s hesitation here.]
“I like your pants.”
“Uh, yes, yes. Okay. I need to get his chart, I’ll be right back.” And the teeny doctor bustled right back out again. I turned to Jack so I could continue my lesson about Kanye West.
“See, Jack, Kanye is—“
“Why. Are you talking about PEOPLE’S PANTS.”
Folks, when you’ve been lectured about social graces by your son who has been diagnosed with autism spectrum disorder, well, you’ve hit a new low altogether.
“I don’t know. I thought they were nice. Wouldn’t they be nice for Daddy?”
“Daddy can’t wear those pants. They are LITTLE PANTS.”
The doctor came back in and flipped the switch to turn on a giant monitor. Jack’s chart came to life in black and white, mostly in terms I couldn’t understand; myopathy and pupil measurements and corneal dilation.
Handwritten in a large white box at the bottom of the screen, someone had scrawled AUTISM in big bold strokes. For some reason the slightest chill ran through me when I read it. I don’t know why.
On the drive home, after we stopped to eat at the much-discussed Bertucci’s and settled the radio on a mutually agreeable station—one that plays some Katy Perry but also Daughtry—I thought about the appointment, and the way the word AUTISM hung over the exam room like a dark cloud.
How would Jack feel if a doctor just breezed in and said, “Hey, Jack! How are you feeling? Are there any questions about your autism I can try to answer?”
Would it be less of a dirty little secret scribbled across the bottom of medical charts and IEP forms and paperwork?
And really, why is it a secret? It’s not Jack’s fault he has it. It doesn’t make him a bad person. It just makes him an inquisitive, slightly rigid boy who can be bossy and anxious and obsessive. Because of autism he has to roll a new food around in his hands—think tacos or meatballs or lasagna—before he can put it in his mouth and taste it.
It also makes him sensitive to light and sound. It makes him see Tuesday in shades of purple and remember that his brother Charlie was born on a cool, grey Monday.
Frankly, I’m getting really tired of hissing it like a criminal in the back of a dark alleyway.
He has autism, you know autism, it is autism.
I want to bring it out into the light. I want to bring it out and examine it and understand it and talk about it; with him, with you, with doctors, with aunts and uncles and neighbors and teachers. Especially, I want to talk about it with Jack.
Remember those cards? The ones I thought about printing after Jack asked everyone about the Nazis during our vacation to Texas? I did wind up having them made. I didn’t do it to be flippant or funny or sarcastic. I did it because I want to start opening up the conversation and ease the spectrum stigma—for all of us.
They were delivered a couple of days ago, and the only person I’ve given one to is Joe’s mother. I had plenty of opportunities to hand them out, but for some reason I didn’t feel ready yet.
When we got home from the doctor’s office the rest of the kids were at still at karate camp, and the house was quiet. Jack flopped down in the family room and turned on the television. Looking at him sprawled across the couch, I decided that before I could hand anyone else the card—the cashier at CVS or the waiter at Bertucci’s or the eye doctor with the nice pants—there was someone else I needed to show first.
I took one out of my purse, sat down on the couch, and handed it to him.
“What. Is this.”
“A card, Jack. A card I made.”
He didn’t say anything, but he held on to it, and as I turned to leave he asked me, “What do you dream. What dreams come true.”
“What do you mean, Jack? What do you dream?”
“Nothing. I don’t know.”
You know what? This post is kind of a sequel to The Person I’m With Has Autism. And we all know how I feel about sequels; unless it’s Rocky II—the best movie ever made—sequels are never as good as the original.
But here it is, another sequel. And yet, maybe there’s even a part three to this story about a boy and his autism, Kanie West and tacos with a lot of sour cream. What is a part three called? A threequel?
I’m going to call it a threequel. Because everyone knows that if Rocky II is the best movie ever made, Rocky III is a very close second.
Maybe one day, some day, our threequel will look like this.