Family and Friends Support Each Other with Little Effort, but Advocacy can Initiate Admiration and Respect from Strangers

by Donna Kirk on December 18, 2012

After the grocery store incident in 1971, I agonized over how to inspire strangers to appreciate my son, a person with visible imperfections. With Matthew’s swimming debut approaching, I was sure I had the perfect answer.

I phoned everyone we knew (or slightly knew) and asked them to tune in to see Matt swim on national television. My list included his doctors and therapists in Oakville, and the pediatrician at Sick Kid’s Hospital who had called him ‘a vegetable with a heartbeat’.

I wanted to make that particular doctor, a nay-sayer and veritable stranger, see Matthew as capable of learning and worthy of respect.

Our family was proud that Matthew could hold his body erect, even though he had a droopy right side and a lopsided grin. He could reach for a toy while seated and not topple. We loved to watch him roll over both ways, which he did at five months. And, his swimming accomplishment was outstanding, even for a typical two-year old child. We were dying to show him off!

Soon after our son’s television appearance I received a call from Sick Kids Hospital congratulating us. Would I bring Matthew to the head pediatrician’s office for a check-up?

Matt had visited countless people in the medical and health-related professions. He always cried when an ordinary stranger tried to hold him, but he acted out a special pantomime for any individual dressed in a white coat.

I spent way too much money on a new outfit for our film star, and we headed into Toronto.  In the doctor’s waiting room, Matthew, all smiles, sat up perfectly on my lap. Finally we were invited into the examining room.

The minute the doctor began his assessment Matt went limp. He hung over the doctor’s arm like a rag doll. He crossed his eyes and breathed like he had double pneumonia.

“He does this for all the doctors,” I said, embarrassed and frustrated.

The doctor looked at me quizzically. “Matthew’s muscle tone is good, Mrs. Kirk, and his swimming is remarkable. I’d like to see him once a year.”

The second we left that room Matthew straighten up and smiled. His breathing returned to normal.

My family found these antics tremendously funny. How smart of him to figure out the difference between a doctor and an ordinary stranger, they said.

How annoying, I thought, when I was trying to encourage people to admire and respect Matthew as an able person.

   *          *          *

Advocacy is described in the dictionary as “persons who speak or write in support of some cause, or plead on behalf of others”. This concept wasn’t something we thought of ourselves; it was imposed on us by a social service worker.

Matthew was two when we adopted our daughter Kelley, a ten-day-old newborn. Six weeks later I learned I was pregnant. (We had been told after Matt’s birth we would never conceive again.) When our third child, Joseph, was born, I had three children under the age of three.

Because Matt was still considered a high risk infant, a social worker visited us once a month. After Kelley joined our family, the worker remarked on our busy household.  When Joseph arrived, she suggested it was time for Matthew to attend Peter Pan, a local nursery school for developmentally handicapped children.

I fought the idea. I had trouble seeing Matthew as disabled, still hoping that one morning he would wake up and everything would be okay.

“Mrs. Kirk, Matthew needs more than just his family,” she said. “You need to give him the opportunity to meet people and socialize in the community. He’s no different than your two younger kids who will want connect with other children.”

I hated the thought of my vulnerable child in the hands of strangers. I couldn’t imagine outsiders being able to see our boy the way we saw him.

“You’ll also have more time to spend with your youngest children,” she added.

She told me I would benefit from sharing information with other parents, something I never considered. Perhaps if Matthew had been my second or third child, this wouldn’t have been so hard for me to understand.

“Mrs. Kirk, in order to advocate for Matthew you must reach out. Isolating a child won’t further his development.”

We had registered him in swimming classes out of necessity – he needed better muscle control. We never dreamed he would learn to swim independently under water, pull himself out of the pool and sit by the side.

Ed and I decided to enroll Matthew at Pater Pan Nursery School.

Bookmark and Share

If you enjoyed this post, please leave a comment or sign up for email updates in the right sidebar.

{ 0 comments… add one now }

Leave a Comment

Previous post:

Next post: