“My wrist, my wrist my wrist,” Jack whimpered, cradling his right arm. He’d just come in from sledding with Rose and Joey on the hill in front of our house, where, according to Rose, he’d flipped off the red plastic sled and rolled into the woods.
“Let me see, can you bend it this way?” I asked, moving his fingers back and forth.
“NO!” he screamed. “That hurts, that HURTS!”
“You know what buddy? I think we need to head to urgent care and have this looked at.”
“URGENT CARE? What is THAT?”
After a flurry of phone calls and arrangements, Joe came home early so I could run Jack into the new urgent care center downtown.
An hour later he and I sat waiting in the small exam room to see the doctor on duty. Jack took my phone out of my purse and asked, “Can I text Daddy?”
“Okay, that’s fine,” I said, reaching for the latest Woman’s World magazine and relaxing back in my chair. All at once I felt very, very tired. For a moment the room was quiet; he intent on typing and me reading about the latest in crock pot recipes.
“Ugh, Jack, I don’t like dinner from the crock pot. Do you? Do you like that chicken thing I make?”
His answer was somewhat unrelated to my question, which is not unusual. “I texted Daddy. I tolded him we should go to Shorty’s tonight. For dinner.”
“You told him, Jack. Right? ‘Tolded’ isn’t a word, you told him.”
“Yes. I tolded him.”
Before I could take my grammar lesson any further, the doctor knocked quickly and hurried in the door.
“Okay, okay now,” she said brightly, scanning the computer screen on the table. “Jack! How are you? I just have a few questions. Let’ see….do you have any allergies?”
“No, he—” I started to answer, but he cut me off.
“YES! I am allergic to CITRUS FRUIT.”
“What? No you aren’t! Really, he isn’t. He has no allergies.” I stared at him with my best you-better-stop-this-crap-right-now face. It didn’t work.
“Don’t listen to her,” he sneered, looking over at me as if we’d never met before—as if I did not deliver all nine pounds, three ounces of him out of my own body and nurse him for seven months and teach him how to sign mama with his chubby little fingers. “She doesn’t know what she’s TALKING about.”
“Well,” I cleared my throat and narrowed my eyes back at him. “The citrus allergy, is, um, unconfirmed at this point.”
“Ah, okay,” she said, turning to where he sat on the exam table. “Jack, where does your wrist hurt?”
“How did Jesus know he was going to DIE at the LAST SUPPER?”
The doctor looked up in surprise and shot me a quick look.
“He’s kind of been interested in that sort of thing. You know, lately.” She looked back at me blankly.
“He has A-U-T-I-S-M-F-Y-I,” I blurted out like a contestant in some bizarre spelling bee. She stared at me for a moment longer and then back at him, probably trying to figure out if we were mother-son evangelists or mass murderers.
I’m never certain exactly when or how I should assert the whole diagnosis thing. I mean, he’s nine now, and kids who are nine don’t usually ask about the Last Supper or Jesus or pretend they’re allergic to limes.
Sometimes I try to pre-empt the matter a little. Whenever I call to make an appointment for him, I explain he has autism and it may make communication a little tricky. But you can’t exactly do that with a place like urgent care.
One time I took him to a doctor and as the nurse led us back to an exam room, I noticed the word AUTISM written in large, bold letters across his chart. They must have used a black permanent Sharpie marker, the kind Jack once wrote all over ours walls with in Buffalo a week before we put the house up for sale.
If you had asked me about how I felt about seeing AUTISM written that way, I would have told you I absolutely didn’t mind. In fact, I was grateful the office thought to clue everyone in so Jack’s visit could be as successful as possible.
But it did nag at me for a while afterwards, and I couldn’t put my finger on exactly why. Was it the size of the letters? Was the staff at this particular office visually impaired? Or was it my own insecurity, my deep, unacknowledged shame about having a special-needs son?
In urgent care, the doctor finished up the exam quickly, and in between answering questions about Moses and what kind of toilet she prefers—Kohler or American Standard—determined Jack’s wrist was nothing more than a sprain. At last, to my great relief, she left the room.
“Jack!” I hissed. “What’s with the toilets! You know we said no more asking people about their toilets.”
“What,” he said smugly. “It’s good information to know.”
“And give me my phone back. What are you texting Daddy about?”
“I tolded you! I want to go to Shorty’s.”
“It’s told. You told me, Jack.”
I looked down at my phone and traced the long length of messages between father and son; Jack asking to go out for dinner, Joe telling him it was up to me.
I smiled to myself to see he’d used emoticons, and I was touched to notice he’d mentioned going out as a family. But what surprised me the most about his conversation with Joe was his mention of fish tacos—his warning not to tease me.
(Back story: About a year ago, I’d ordered fish tacos, and when I tasted them I’d been taken aback by how spicy they were. When the server stopped over to check on us, I’d exclaimed, “These tacos are VERY SPICY! You should really note that on the menu.” Joe has never let me live it down; almost every time we visit Shorty’s he pretends to wave over a manager, and in a voice reminiscent of an eighty-year old woman with a thousand cats at home, he whispers; “Oh, these are so spi-cy! You should really warn people!” I know, people, I know. I married a comedian.)
As we walked out of the urgent care with a hearty good-bye and Jack’s whisper-shout, “That doctor SMELLED FUNNY!” I thought again about the word AUTISM written in black and white.
One of the first essays I ever wrote about Jack was called Paper Boy, about my intent to bring him to life beyond his paper diagnosis; adding dimension to the flatness of the clinical phrase autism spectrum disorder.
But sometimes I wonder how much of Jack’s progress depends on what I choose to see that day: it’s a good day if he wears his eye patch without a scene, bad day if he’s stimming a lot. Good if he does his homework without much drama, bad if he asks me ninety million times where I first saw the movie Annie.
Good bad good good bad good bad bad. It’s exhausting.
This is my life with Jack. It is living with the undulating rhythm of lost dreams and new hopes. It’s oh wow he doesn’t really ask about death anymore! But now he’s obsessing about the Keurig and every time I look at the Keurig he’s standing over it and trying to take it apart and counting the K-cups and rearranging them in some mysterious order and I am going to go straight out of my mind.
Driving home in the dark, it occurred to me that I can bring him off of the paper, but I forget to add the color; the wild splashes of yellow laughter and the brilliant red tantrums and the pale pink butterfly kisses and the long silvery threads of anxiety weaving in and around his soul.
Autism is bigger than black marker on a white piece of paper; it is musings about Catholicism and plans for family dinner and sore but not fractured wrists. It’s pretending to be allergic to lemons and stimming in urgent care and a robotic voice that tolded me he wanted to go out for dinner as a family and don’t tease Mom.
And my reaction to the block letters was—like autism itself—complicated; a complex combination of sadness and gratitude and surprise and bewilderment.
Later that night we were all sat crowded in a booth at the restaurant in town, Shorty’s. I looked down the bench seat to where Jack sat, squished between five-year old Henry and ten-year old Joey. He was grabbing tortilla chips from the basket in front of him, rocking slightly and grunting to himself.
I resisted the urge to put a hand on his shoulder to try and still him, or to ask him if we should head to the lobby so he could get his zoomies out. I didn’t chide him for eating too fast. Instead, I focused on his small smile, the way he pushed his glasses up the bridge of his nose, his obvious pleasure at being together.
In the restaurant, I chose to see J-A-C-K, instead of just A-U-T-I-S-M. I saw the rainbow of moods and emotions and potential that is my son, and for the briefest moment, I savored the wholeness of him. For the moment, it was just good.
Next time I call for an appointment, I thought to myself, I’ll tell them that yes he has autism, and yes it may make communication a little tricky. But I’ll also tell them they won’t even believe how funny he is.
I’ll add some color to autism’s black and white canvas.