Tracey McGillivray’s Bright and Burning

Dec 18, 2015 by

Tracey McGillivray’s  Bright and Burning

Personal Essay:

 

I drive past a low, green-glass building on Sheppard Avenue and my teenaged son swivels in his seat to stare out the car window.

“You know, mom,” he says. “I used to be a kid who didn’t talk much.”

“I know.” We’ve never once discussed this. How is that possible?

It’s been seven, maybe eight, years since we walked through those doors. But in the early days, from nursery school to mid-elementary, Thomas had speech therapy in that building. Hundreds of visits. More than once I carried him in kicking and screaming.

“Do you remember learning to use words?” I ask.

“I remember everything,” he says.

That makes two of us, I think, meeting his eyes.

Cue the mental slide show of images—Thomas in a fit of rage, overturning chairs, trying to run out of the therapist’s office. But those days are over.

“Flash cards,” I say.

They came in little cardboard boxes like playing cards, but the stakes were higher. Each card outlined a basic human interaction, stuff most kids pick up by osmosis, but which mine needed broken down into small, manageable chunks.

I read articles where parents say they were floored when a specialist told them their child had autism. But it was different than that, for us. Thomas was unsettled in the world from the moment he entered it. When he was two, I stood in front of the mirror with him squirming in my arms. “Where’s Thomas? There he is!” Touching his tummy, his nose. “You are Thomas.” He just wanted to get away and run.

When the psychologist said, “You don’t seem surprised,” my husband replied, “We’d sort of figured it out ourselves.”

And yet the word—the label—affected us. The opposite of a bandage, it hurt when applied. We couldn’t rip it off, but that night in bed we whispered to each other.

“We don’t have to tell anyone. He’s the same little boy he was yesterday.”

Thomas’s favorite set of flash cards taught “If…then” scenarios. I pulled out a card and showed him the picture. Read it out loud.

“If someone says, Hello…then you say, Hello, too!”

“If your friend tells you a joke, then…”

Silence.

“What do you do if Adam tells a funny joke? You…” He turned over his toy train and spun the wheels.

For months we practiced, until he could answer each one without hesitating. I replay those conversations in my head, like the videos Thomas memorizes after one viewing.

“If you get dirty playing outside, then…”

“…have to need to take a bath!”

“If your house is on fire, then…”

“Have to call the fire truck to come with the hose and the water and then there’s no more fire! Have to. Put. It. Out!”

Picture of a tiny, crying child pointing towards a house engulfed in flames. It was terrifying. But so many words all at once made my heart sing.

“If you eat too much candy, then…”

“Have to get sick!”

This one always made him laugh, with its green-faced youngster in a honey-bee costume, on a floor strewn with Halloween candy wrappers.

“If you are angry, then…”

“Have to get mad.”

“And what should you do if you get mad?”

He scrunched up his face in mock fury, just like the boy in the picture. “Grrrr!”

One day I couldn’t help myself and threw aside therapy, just for a moment. “What? You have to turn into a bear?” I asked, tickling him. “Grrrrrr!” We fell on the floor, giggling.

I expanded my vocabulary, too, diving headlong into the language of his world, his needs. A sensory diet would build his tolerance for touch, for wearing clothes, for the sound of water filling the bathtub. I read and re-read a blog by another mom called “Dr. Strangetalk or: How I Learned to Stop Worrying and Love Echolalia.” It gave me hope that the seemingly mindless repeating of what other people said would one day lead to Thomas using those same phrases in his own creative, maybe even relevant, way.

One day I was pumping gas and realized I was standing on my toes. Tactile defensive, I thought. Thomas walked on his toes. “Kids with autism are constantly bombarded by input they can’t filter. Even the feel of the floor against their feet can be too much,” the occupational therapist had explained. “It’s a protective mechanism.”

My husband and I competed in a game called “He Got That From Me.” Like we wanted to take credit—or was it blame?—for the confluence of genes that gave rise to our son’s more challenging quirks.

 

Meanwhile, I imagined a flash card of my own, with a selfish agenda.

“If mommy says, I love you, then…”

Somehow I decided it would be wrong, that it would be cheating, to teach him to say, “I love you, too.” But how I ached for it.

I even wrote a story—a true one—about Thomas telling all sorts of people he loved them. Strangers in elevators, friends of his sister’s, but never, ever me. It ended with him showing how he felt another way, by drawing a picture of himself dressed as Superman, carrying me to safety.

I called it “A Love Story After All,” but when it came out in the newspaper, the title was changed to “Four Words You Can’t Teach.” Which felt different, somehow. I looked at it for a few minutes with a queasy feeling in my stomach. Then I shrugged. I went to journalism school and worked in PR. I changed other people’s headlines dozens of times. I was suddenly on the receiving end of editorial discretion.

Not long after, I went to dinner with another mom. She is married to my husband’s oldest friend, and by some cosmic coincidence, their son has autism, too. François is a gentle, gorgeous blond, the spitting image of his father as a young man.

Even when he was little he understood when people talked to him. But something was amiss in the wiring that told his mouth how to shape itself to form words. His therapists and parents moulded his lips to help him say things out loud. “I want juice.” Or he used his iPad and pointed to words and pictures.

Part way through dinner, Johanne said, “I read your article. ‘Four Words You Can’t Teach.’ But I took a different approach, one that felt right for me and François.”

She told me her story, a beautiful one. Mother and son shared a good night cuddle in his wooden bed that looked like a boat. Star-shaped lights glowed on the dark blue walls of his bedroom. They read a book together, then she hugged him and said, “Good night, François. I love you.”

“He was staring at me so intently,” she told me from across the table. “Like he really wanted to share something. He kept saying I. I. I.”

An L sound is hard to make. Try it. Your tongue has to touch the roof of your mouth just so. Now tap your tongue on that spot and lower it quick. Breathe out while you do. Uh.

You need a V sound. Upper teeth on lower lip.

Johanne took her hands and helped her son speak the four words in his heart. The image lingered in my mind like the visual residue of fireworks, bright and burning.

 

One day we went to a birthday party. It was against my better judgment because parties meant chaos and sensory overload and meltdowns. But it was for Adam, Thomas’s best buddy from the neighbourhood, and here’s the thing: If your friend asks you to attend his birthday party, then you go.

It was a trampoline party and things did not begin well. But the birthday boy’s dad, one of those parents I both admire and slightly hate because they seem to automatically know what kids need, even mine, said, “What if you went up to the viewing area for a while, where it’s quiet? Maybe once Thomas gets used to the whole scene he’ll be able to come down and have a turn.”

From upstairs we could see across the whole warehouse-sized building. It was filled with rows and rows of square green launch pads. We watched as a dozen or more tiny, perfect children took off and landed safely, over and over.

Thomas turned away from the window to investigate a toy box in the corner. “Want to go down, Hon?” I asked. He shook his head. No. Which might have meant, not yet. I just have to be patient, I told myself, up there alone with my son.

After a while he took my hand and said, “Come on!”

Soon Thomas was bouncing while I stood close by and watched. He was happy and we were both laughing because it wasn’t such a common thing, happiness. Then he launched himself into my arms, whoosh thump, and I staggered under the weight of him.

“I love you, mommy!” he shouted. “I love you!” And it might have been the vestibular stimulation talking but I didn’t care. Remember this, I thought. Remember it all.

 

At the red light, I reach across the car for Thomas’s hand and give it a squeeze.

“What?” he asks.

I’m in two places at once. For the first time, grateful for both.

Tracey is a rescue dog-walking, teen-wrangling former farm girl with an MA in Journalism, an MBA in Nonprofit Management and a compulsive list-making habit.

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