By Sarah KovacEthan sat in my lap, snuggled against my chest, rambling on in toddler-speak about the stars out his window. The conversation lulled as he took my hand into his. At two years old, his hands were already larger than mine, and much, much stronger.I was born with a rare congenital birth defect called Arthrogryposis. In the womb, my arms didn't move enough to develop proper muscle tone and the joints from my shoulders to fingertips locked into place.Growing up, as I learned to eat, write,...
Thoughts on a fractured world
A little over 19 years ago I bought a royal blue, down-filled baby hat with ear flaps that did up with a snap under the chin.It was the equivalent of today's designer baby togs. I used to run my fingers over that hat -- with the plush soft lining and bright azure shell -- and imagine my son's fresh face peeking out of it.It was not a possibility in my mind that he could be anything but perfect, though I don't think I would have used that word. We'd worried when a blood serum test showed I had an...
The eve of his 19th birthday
He fell asleep reading, surrounded by books. Tomorrow night he goes out for his first beer.&nbs...
Can you be 'included' and still feel left out?
By Gail TeachmanWhat do we mean when we talk about inclusion? For the most part, we've come to take it for granted that inclusion is always a good thing. But what is inclusion anyway? Are we there yet? How will we know when we get there? Are these even the right questions to ask? In the past a children's rehab goal was 'community integration,' but in the last 30 years there's been a move toward using the term 'inclusion.' Even though inclusion is outlined as a goal in international human rights...
To Apologize or Not to Apologize?
The other day a mom was telling me about how her little girl hit another girl at a birthday party. The mom was frustrated because it took a long time to get her daughter to apologize, and then when she finally did, her apology wasn't sincere at all. She wanted to know how to get her daughter to really feel sorry.This happens all the time, where a child does something wrong and parents make their child apologize. Of course we want our children to feel remorse when they've done something wrong, but...
On random paths
I'm watching snowflakes fall outside my massive window at Holland Bloorview. One of the unique things about our newish building (2006) is floor-to-ceiling windows that let in natural sunlight—something you don't see in many hospitals. The glass is so clean and unobstructed that I can see big fat fluffy flakes close up. Further out the churning up of so many tiny dots of snow looks like millions of frenetic stars.What strikes me as the wind changes is how many flakes float by my window...
Rosie: On 'what it means to be autistic'
A brilliant look at the world of autism -- narrated by a girl with Asperger's who has a brother with severe autism....
Who's fit to parent? A family fights for 'Bear'
Manuel Echevarria (left, front) was taken by child services from his family in August 2012 after a series of events that began when he was taken off Medicaid's disability coverage by a caseworker, in error, and the family lost home nursing care. Manuel, who has cerebral palsy and complex medical needs, including a g-tube and seizures, was returned to his family three months later. His parents were acquitted of neglect, but never received an apology. The family...
A dark chapter in medical research
ReelAbilities is a New York film festival that gives voice to stories about people with disabilities. This Friday Willowbrook (above) is being screened. It's a disturbing account of researchers who injected active hepatitis virus into healthy children with intellectual disabilities when they were admitted to an institution as part of a medical experiment."...most ethicists see Willowbrook as an example of medicine run amok, in which overzealous researchers did harm to an exceptionally...
What's in a word? Stigma
The other night I found Ben in bed, his face behind a book that was jiggling about because he was laughing so hard.The book was The Tale of Benjamin Bunny by Beatrix Potter.It's a tiny hardcover book my dad read to me as a child. My dad was a wonderful storyteller and hearing him read was like listening to music. On the floor beside the bed was The Tale of Peter Rabbit.Ben has always loved the antics that Beatrix Potter's animals get up to. He wouldn't let me see what page he was on, but I figured...
Malaika Mums and Kids fundraiser
Want to support the Malaika Mums sewing project and Malaika Kids special-needs school in Kenya we wrote about in BLOOM (click on issue top right). Comfort the Children International, based in Austin, Texas is participating in a 24-hour fundraiser called Amplify Austin. Go to Amplify Austin and type CTC International in the search box to support these Kenyan projects for families of children with disabilities. Open till 7 p.m. March 5. Photo by Chelsea De...
Has your doctor heard about these 'F-words?'
By Diane KayAbout a year ago, I contacted Canadian researcher and developmental pediatrician Dr. Peter Rosenbaum. I wanted to ask his advice on the pros and cons of walking in children with cerebral palsy. My son Alfie, 7 (above centre), has significant challenges because of cerebral palsy. He wants to walk, despite using what many call an abnormal pattern of movement. Alfie LOVES walking with our support or a walker. It isn't functional, we’re told, but his slow and excited steps give him a hard-to-beat...
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