Your Child has Been Diagnosed as Handicapped. Now What?

by Donna Kirk on December 7, 2012

Matthew KirkA Circle of Support Comes First

Our son Matthew suffered severe oxygen loss at his birth on February 19, 1970. He was transferred to the Hospital for Sick Children the next morning. The head of pediatrics wasted no time diagnosing our baby.

“Your son is a vegetable with a heartbeat and should be institutionalized as soon as possible.”

My husband Ed and I were devastated by this prognosis and the callous dismissal of a child we’d longed for and loved at first touch. In response, we began the fight for Matthew’s rights.

His high needs introduced us to a reality we never expected and knew nothing about. Matthew couldn’t suck or swallow. He was fed by a tube inserted through one nostril down into his stomach. His saliva had to be suctioned countless times each day to prevent drowning.

Because he was our first child, I was able to be with him every day at Sick Kid’s for the two months he was in that hospital. I wondered if my constant presence encouraged the nurses to work hard for our son. They spoke to him, checked on him and took his vital signs more often than the other infants. When we brought Matthew home in April 1970, he had learned to suck and swallow and could hold his head up.

Ed and I believed our love and support would help validate our son’s right to the best life possible. This conviction became the cornerstone of our quest for recognition and equality for Matthew in the eyes of other people, and particularly, medical professionals. Ed and I saw him as someone who deserved a respected place in society. We began our mission by asking questions and gathering information.

Support for Matthew started with our families. My in-laws were fully aware of the challenges we faced. Their youngest daughter Louise, born in 1945, had Down syndrome. I was an only child and my mother, a widow, had longed for a grandchild. To these folks, a baby was a baby. After living through two world wars and the great depression, they had a positive “get on with it” attitude.

The unconditional love from our parents inspired Ed and me. We knew our efforts to help Matthew become the best person he could be would be applauded and encouraged by our immediate circle, at least.

Our sources of support extended rapidly to friends and their families. My girlfriends, young mothers themselves, were very interested in my son. I learned to speak positively, and practiced selling the joys and talents of Matthew. People saw him as a miracle baby who would continue to learn. Ed and I began to believe it ourselves, and had fewer days of doubt and despair.

When Matt was just over a year old, we were at the grocery store waiting in the check-out line. He sat in the cart and I held him up with one hand while I unloaded groceries with the other because he couldn’t sit on his own. A woman behind us watched with a look I had come to dread. She held her head to one side, regarding Matt with a quizzical expression.

“How old is your baby?” she asked.

“Fourteen months.”

“He’s still not sitting on his own?”

I didn’t answer.

“Is he retarded?”

I grabbed Matthew up in my arms. “Not as retarded as you are!”

I cried all the way home and phoned Ed at work, complaining about the terrible injustices in the world. He sighed and said he wished he’d been there.

“But you and Matt are going to have to learn how to handle things differently.” His pragmatic statement became a pivotal point in formulating a plan to educate the public and create a positive image for Matthew. But I knew he had to reach obvious milestones to become a self-functioning person.

We spent many hours trying to teach Matthew how to sit on his own. When sitting him on the floor and propping him up failed, I filled his little plastic bathtub with warm water and sat him in. His spastic hands easily gripped the sides of the tub. He loved slapping the water with one hand, and learned to keep himself steady by holding on with the other one.

To enhance Matthew’s learning process, we enrolled him in swimming lessons at Jack Buckler Aquatics in Mississauga. By the time he was two, he had learned to swim, pull himself out of the pool, and sit on his own. Matt was the only child in his class chosen to be filmed for a popular program, Sportsbeat 72. Show host Fergie Olver praised his swimming skills on national television.

Stay tuned for my second post: Family, friends and teachers love with little effort. Inspire uninitiated strangers to appreciate others regardless of visible imperfection and limitation.

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{ 10 comments… read them below or add one }

jennifer mook-sang December 7, 2012 at 10:42 pm

what a great story, donna. you and your family are an inspiration.


Donna Kirk December 12, 2012 at 10:14 pm

Matthew helped us to ‘raise the bar’.


Jim Preston December 10, 2012 at 2:20 pm

I have only finished part of the book but the insight, committment and love pours out.. be prepared for some dewy eyed moments. Thanks Donna!!


Donna Kirk December 10, 2012 at 4:37 pm

Thanks for your comment, Jim.


Leslie D'Hollander December 12, 2012 at 11:35 am

I loved the book. It had special meaning for me as it gave me a better understanding of what my sister has experienced. As you know, she also has a special needs child. She once told me how blessed she feels that she has Katie as she has learned through her how wonderful people really are. Your book and Matt’s story tell the same tale – thanks for the putting it all into words and sharing. Les


Donna Kirk December 12, 2012 at 10:13 pm

Bringing up a child with special needs can be a blessing. The most amazing thing is that Matthew did more for me than I could ever do for him!


Patti Hnatiw December 12, 2012 at 12:29 pm

Your book grabbed be right from the first page! I haven’t finished it yet — and I am having great difficulty putting it down at this busy time of year. It is so well written, your recall of all you went through is amazing and underlines how impactful it was on your life. Most of all I am moved by your openness and sharing — the book is raw, honest, moving and inspiring as you learn to appreciate the gift of Mathew’s life. Your heartache, exhaustion and frustration is evident — but your fierce love and devotion shine through.The book, the website and the blog are even more then that — they are an important resource and will provide support/comfort of those walking in your footsteps today. Congratulations!


Donna Kirk December 12, 2012 at 10:10 pm

Thanks Patti. I’m honoured that you are taking time to read Finding Matthew two weeks before Christmas!


Richard December 12, 2012 at 8:44 pm

Looking forward to the next post!


Donna Kirk December 12, 2012 at 10:09 pm

I plan to have the second blog up next week.


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