Melissa Blake

Melissa Blake

Disabled and Thriving

Words of Wisdom Wednesday: A Mother's Love Blooms.

How one mother's love spawned a magazine.

Posted Dec 02, 2009

I'm honored today to have interviewed Louise Kinross. She's the editor of Canadian's BLOOM, a publication that helps parents of kids with disabilities. But she's first and foremost a mother to son Ben, 15, who has a rare genetic condition called Langer Giedion Syndrome.

Describe a bit of the emotional journey you found yourself on after your son's birth?
The main emotions initially were shock and fear. The doctor thought Ben had a syndrome, but he didn't know what. He used stigmatizing words and drew up a list of seven things that were "wrong" with Ben. I was ecstatic when Ben was born, and I was angry that I wasn't being allowed to celebrate my son's birth. Over time, there was guilt: guilt that I hadn't given my son a clean slate, that he'd started life with huge disadvantages. I felt fiercely protective and was on the lookout for other people who might be judging him. I naively thought I could control what others thought of him. I questioned why this had happened to Ben, to my husband and me. Over time, the list of Ben's diagnoses grew to include hearing loss, dwarfism, failure-to-thrive, an uncoordinated swallow, low muscle tone, bone problems, lack of speech and learning problems. Each time a new diagnosis was added, I felt like I was being knocked down, over and over again. I had times of black depression. But my delightful, funny, immensely curious, sensitive, courageous, loving boy kept me moving forward.

Describe your greatest joy in being his mom. Is there any particular moment that sticks out in your mind?
There are many. They would be simple things, like listening to Ben have a giggling fit watching Tin Tin and his dog Snowy. Or when he signs "happy Mom" on Mother's Day, and we both know what he's trying to say. Or when he looks into my eyes - in silence - and we see each other. For someone who used to find the absence of sound awkward and race to fill it with words, my son has taught me so much.

How important, in your view, is the relationship between a mother and her child with a disability?
If the mother is the primary caregiver, it's critical. She's the one who knows the child's inner world and potential, the one who will fight for the services the child needs, the one who intuitively knows when something isn't right. Children initially see themselves through their parents' eyes, so the mother's ability to see the beauty, wholeness and promise of her child is paramount.

What do you see as the biggest misconception about children with disabilities?
That a difference (be it in learning, appearance, physical ability, speech or behavior) equates with "lesser than."

Describe BLOOM - how did it come about? What do you see as its impact on society, etc.
BLOOM is a how-to magazine on parenting children with disabilities produced by Bloorview Kids Rehab in Toronto. BLOOM gives voice to the unique joys and challenges of special-needs parenting, which are often neglected in mainstream magazines. The name reflects our belief that every child blooms in his or her own unique way. As Canada's largest children's rehab hospital and a University of Toronto teaching hospital, our goal is to be the #1 source for childhood disability information for parents and professionals. Through the BLOOM magazine, Web site and blog, we create a community where parents can share practical experiences and benefit from the best professional advice. We also aim to raise public awareness of families of children with disabilities and improve understanding.

What is your biggest concern for children with disabilities?
That diversity is not valued in our culture.

What is your #1 piece of advice for parents of children with disabilities?
Early on, I used to feel I couldn't live if Ben didn't walk, talk, grow or do any of the other things most people take for granted. That created an incredible amount of anxiety and over-focus on trying to prod his development. Nothing was ever good enough, and we had no perspective.

My #1 piece of advice would be to know that your love for your child will enable you to cope with whatever comes your way. Let go of trying to "fix" your child and open your eyes to the richness of what is already there. Recognize that life is short and tenuous. Focus on the things that bring you and your child joy. Live in the moment. Treasure your time together.