The day I started my job at Bloorview Children’s Hospital over 20 years ago, I read Welcome to Holland by Emily Perl Kingsley, who has a son with Down syndrome.
In it, she writes about the journey of parents raising a child with disabilities, comparing it to an exciting trip to Italy that is unexpectedly re-routed. She describes the shock, the disorientation and ultimately, the acceptance that follows.
It galvanized me. As director of public relations and fundraising for the hospital I listened to families’ stories and reveled in the fact that I could help make a difference. I wrote about their issues and helped fundraise for new and improved programs. I admired the dedicated and skilled staff members on the frontline. We were all trying to make things better.
We were showing families how to thrive in “Holland.”
Ten years later, I was a stay-at-home mom with two dogs and two kids born 18 months apart. Our youngest, Thomas, is on the autism spectrum. We were moving, and as I cleared out the filing cabinet I came across a piece of paper I hadn’t seen in a long time.
“After you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.”
I sat on the floor, re-reading the words that had so inspired me when I worked in children’s rehab. I slipped the fragile, yellowed paper out of its protective plastic sheet and held it in my hands.
Then I ripped it into tiny pieces.
I was upset with that past version of me, the naïve 25-year-old who thought she understood something of what it was like to parent a child with special needs.
I remembered parents at the hospital telling me: “We are so tired. We haven’t slept in years.”
I thought I “got it” when I worked there, but there’s nothing like being a special needs parent to awaken you for real.
When he was little, Thomas was a runner, a climber of third-floor banisters, an un-locker of front doors and child-proofed drawers. Each morning I whispered, Please let me keep him alive today. And each night in my dreams I’d see him charging onto the road in front of a car. I’d wake with a pounding heart, fingers clutching air.
I knew I was tired. But until I found that essay, I hadn’t realized how angry I was. Angry that the issues I’d written about, and thought we were working to improve, were the exact same issues I encountered a decade later as I tried to find the right therapists, to get Thomas a developmental assessment and to cope.
I thought I'd understood what parents were telling me, but really I hadn't.
Our kids are more than a diagnosis or a compilation of medical needs, they said. “Treat the whole person, not just the problem.” As the head of public relations, I nodded and wrote down that catchy phrase. Of course, I thought. That makes total sense. Why would anyone do anything else?
Then I had my own experience with health workers who didn’t treat Thomas as a real person, who took away our power.
When he was four, Thomas needed surgery to correct a minor birth defect. The day of his pre-operation bloodwork, he had a total meltdown. He thrashed and hollered as three staff members held him on a bed. Get the legs, one of them instructed me.
“Don’t worry, boy. The vein is good!” the woman drawing blood started yelling over Thomas’s crying. She said it several times, as if it would reassure him. “Boy! The vein is good!”
Shut up, I implored in my head. Just shut up.
Then it was over. We collected ourselves, blew our noses, and left. I was too shaken to drive, so Thomas and I sat side-by-side on the steps of the hospital, sharing a bag of Cheesies. That day I didn’t care about empty calories or orange dye. People streamed past us in both directions as if we were invisible.
How did I just let that happen? I wondered. How did I let them hold my son down? How did I let that nurse call him “boy?”
When I wrote stories about families at Bloorview, parents told me: “We live with a constant level of stress. Disaster is never more than one step away.”
I heard what they said, but I didn’t get it till I lived it with my own son.
One hot summer day, as we waited to turn left onto the street where the speech therapist worked, a tiny helicopter whizzed by my head and out the car window. “Harold fly!” exclaimed Thomas, whose lack of impulse control had just gotten the better of him. His beloved toy landed on the road in front of oncoming traffic. The first of many cars ran over it. Rumble rumble thwack.
Thomas had unclipped his car seat (he was a whiz at getting out of any intended restraint) and was trying to climb out the half-open window. “Harold!” he called as I shouted in panic, “Oh no, sit down. No!”
I put the car in park and pulled him back in. By now, people in the cars behind us were leaning on their horns. I wrestled him into his seat. Somehow we made our way to the parking lot. By then he’d cried himself to sleep.
The speech therapist looked at my face, then at the passed-out, tear-stained kid in my arms. I was trying to rouse him, desperate not to waste a minute of therapy despite all that had just happened.
“Let him sleep,” she said. “Tell me what happened.”
Everything came pouring out that day. It was the first time I revealed what a mess I was. How every time someone told me what a great parent I was, my stomach twisted in dissenting knots.
Years before, the parents I worked with had explained this feeling: “Even when we make progress, we still feel behind.”
At his first optometrist appointment, Thomas sat in the chair and followed the doctor’s directions. He sang out the names of the letters on the chart and shouted “There!” whenever the yellow light flashed on the video screen. He was calm and accommodating, two words I hadn’t imagined using to describe my son. I was proud of him. We had come so far!
“Now, mom,” said the optometrist. “He needs to make eye contact. If he’s not looking at you, he’s not listening.”
I explained that this theory didn’t fit with the latest thinking, that people with autism can be overwhelmed when they try to process visual and auditory information all at once. “Some people actually hear better if you don’t force them to look at you,” I said.
He raised his eyebrows. “Oh, really? I hadn’t heard that. Well, I also notice he’s not scanning very well. That will impact reading. You need to practise every day. Here, I’ll show you what to do….”
I was so proud of how Thomas had handled the eye test, but once we were out on the sidewalk I felt deflated. “Even the (bleeping) optometrist is giving us homework!”
When I worked at Bloorview, parents told me “the system is not a system at all. We’re forced to tell our story over and over.”
Mrs. B., a mom whose friendly, freckled son had complex needs, said she’d gotten so fed up with repeating her child’s health history that she’d recorded a cassette tape.
“It got to the point where I’d hear the first question—Was it a normal pregnancy? —and I’d want to scream,” she said. “So now I hand them the tape and say, it’s all there.”
From my chair on the other side of the desk, I wondered if she was brave or strident, or both.
Years later, as I dutifully filled in countless forms for a myriad of specialists, I remembered Mrs. B. They were the same questions, over and over. I’d submit the answers in writing and then, when the first appointment rolled around, we’d work through the same questions verbally. What a colossal waste of time when there was none to lose.
The next time it happened, I opened my mouth to complain. But before I could, the therapist said, “I realize a lot of this is in the report you filled out. I have a learning disability and sometimes I don’t completely process written information. So I like to be sure.”
Everywhere I went, at Thomas’s school and out in the world, I asked people to better understand my son and make accommodations for his needs. Surely I could offer the same consideration to the therapist, or to anyone who asked it.
It was a humbling reminder. We are all just human beings, experts included, trying to do our best. Something shifted inside. Maybe I could forgive that former me, who had tried her best with good intentions. And maybe it was time for me to ask for help of my own, to find my own footing in Holland, as Emily Perl Kingsley had written about in her essay.
Thomas will be 15 in a few weeks. He’s taller than me. He’s an amazing artist who tries hard at school and has a few good friends. He decompresses on his swing many times a day. He is a charming and disarming boy, who tells me, “ I love you, Mom, but you really do suck at air hockey.”
I’m totally okay with that.