It's almost the end of Autism Awareness Month, and what have I done?
I want people to understand my son and all the kids like him. But when people ask me questions, suddenly I'm the one with communication and social problems.
"What should I tell my son when he asks why your son doesn't have to sing O Canada?" another mother asked one day a few years ago. We'd run into each other in the change room of our fitness club. I clutched the white towel closer to my chest and opened my mouth. Nothing came out.
She continued: "I told him some children are slower than others." Here she looked at me sheepishly. "But my son said, 'No way, Mom. Thomas is not slow. You should see him do tricky math!' "
As we laughed, I lowered my defences. We talked about Thomas's sensitivity to noise, how brassy music blaring over the loudspeaker and the voices of 20 classmates, not all in perfect harmony, had sent him into hysterics the first day of senior kindergarten in a new school. How we were letting him stand in the hall and would slowly move him back into the classroom.
I described serenading him with our national anthem each night while he was in the tub. Without making a big deal about it, of course. That would trigger his anxiety and make it impossible for him to learn the lyrics.
For a moment we shared a tiny piece of what it's like to have a child on the autism spectrum, where the simplest thing can be difficult. And I saw that she understood.
Too often, when we're out in the world and something's gone off the rails, I can't turn to strangers around us and explain: What you're seeing is not the whole story. But I feel the looks. And I think, If only you knew. Where we've come from. And how hard it's been to get here.
Picture this: A mother crouches on the sidewalk beside her distraught son. He's screaming, "I can't have you in my life" at the top of his lungs. Other parents hold their children's hands tighter and walk past, staring straight ahead. Mom seems calmer than the situation warrants. "Your voice is at a five," she says. "It's hurting my ears. Let's take it down to a three." The boy bats her on the arm. "I can't have you in my life!" he yells again.
Please don't think badly of these two. It's just my son and me with our autism showing. One morning, he decided he wanted to walk to school by himself. The day before he had watched a movie with his older sister Emily in which a rebellious teenager told her parents, "I can't have you in my life." Thomas's brain never, ever forgets a scene from a movie. So his thorough, but non-traditional, filing system retrieved this phrase to communicate today's desire for independence.
But I didn't know all that yet. "Try to say it another way," I begged, folding him in a deep hug to calm him and keep him from running into the street. "Try to say it another way." Slowly we found the words to understand each other.
"Say it another way. Show him. Give it a number." This is the advice I share with the people in our lives. I translate convoluted instructions into simple, concrete words. Draw stick figures on scraps of paper. Thomas manages well when he knows what's expected of him, and falls apart when the world makes no sense. We teach him to talk through the things that make him nervous. "Five rows of six questions," he whispers, pulling out his homework. "I can do that."
I learn to love incremental change. To realize we are all making progress. Last time we visited my parents I watched my father prepare to take Thomas to the store. He took a yellow sticky note and wrote a number on it. "This is how much money you can spend on a toy. Okay?" Way to go, Grandpa! I thought as I watched them head out, Thomas clutching the piece of paper in his hand. One potential meltdown avoided.
One night, as we struggled through a reading passage, I sighed. Thomas slammed a hand on the table. "You want to scrap me!" he said. After all our years of watching train videos, I immediately got the reference. I shook my head. No way. "How can you want to scrap me, your own son?" he asked, with a hint of a smile.
I was beginning to clue in that he was pushing my buttons when from the living room we heard Emily laugh. "Who would want to scrap a human being?" she asked. We shrugged our shoulders and got back to work.
I remind myself that children on the autism spectrum grow up. I read Temple Grandin's books. Listen to Matt Savage play jazz. Watch Clay Marzo surf. They've all found their place.
My favourite blogger, Mom - Not Otherwise Specified, recently wrote about a visit to her son's classroom to answer the children's top 10 questions about autism. "Why does Bud say the same things over and over?" "Why does Bud run in circles?" My personal favourite: "How can I be a better friend to Bud?" Now there's a mother who's making a difference.
Here it is Autism Awareness Month. What have I done? Finally it hits me. This is the way it has to start. In one classroom. With one grandparent. In the change room, with two women realizing they are both just trying their best. Maybe, with a story.
Next time you see a mother and son creating a scene on the sidewalk, an understanding smile would make my day.
Tracey McGillivray lives in Toronto.