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Sunday, September 30, 2012
Thursday, September 27, 2012
Coming clean on the word disability
I think my best writing happens when I most don't want to write about a topic.
Perhaps that's because it gets at my own ambivalence about the topic and my desire to mask that vulnerability by remaining silent. It means I'm confused and I don't know exactly how I feel. All I know is that the received wisdom on the subject doesn't sit well with me.
Today that subject would be use of the word disability.
Outside...
Tuesday, September 25, 2012
Dad's age a small risk factor in autism
I was concerned about this study's impact on how our culture views a parent's role in “causing” disabilities like autism. So I was pleased to interview Dr. Evdokia Anagnostou and learn that while helping us understand the jump in autism rates in a large population, the study does not identify father's age as a major risk factor in individual cases. Louise
Father's age linked to autism risk, but overall risk is small
Men in their...
Monday, September 24, 2012
Noah in Times Square
Noah was one of the kids featured in a video by the National Down Syndrome Society that aired on the Jumbotron in Times Square Saturday as part of the New York City Buddy Walk...
Friday, September 21, 2012
A place to call our own
By Stacey Moffat
My son Carter (above) has repetitive behaviours and sensory issues. He’s non-verbal and struggles with social skills. Yet he doesn’t have autism.
Carter’s fine-motor skills are weak. He used to drool (before he had surgery) and has problems with motor planning and coordination. But he doesn't have cerebral palsy.
He’s developmentally delayed and has low muscle tone. But it’s not Down syndrome.
Carter's...
Wednesday, September 19, 2012
Are people with disabilities a new economic market?
Rich Donovan (above) was a trader for Merrill Lynch who started Lime Connect, a non-profit that helps companies recruit people with disabilities at the college and professional level.
Donovan is now CEO of Fifth Quadrant Analytics, which provides corporate clients with tools to capitalize on disability as an emerging global market. Here, people with disabilities are seen as consumers, talent and taxpayers.
"In the last U.S. census, 19.6% of the population thought of themselves as having a disability," Donovan...
Tuesday, September 18, 2012
First class to no class?
Watch the video (click above) and judge for yourself whether this teenager was behaving in a way that would make him a "flight risk" sitting in first class with his parents on an American Airlines plane. To make matters worse, when the family was rebooked on a United Airlines flight, they found themselves seated in the back row of the plane with two empty rows of seats in front of them. For the protection of the other passengers? From first class to no clas...
Of note
Sam's Top Secret Journal: Book 1 -- We Spy
Sam is a middle school girl determined to solve Seattle's mysteries with her gadget-savvy little brother John. Sam also happens to have Down syndrome. Written by an orthopedic surgeon who has a teenage daughter with Down syndrome.
The Spirit Catches You and You Fall Down is one of my favourite books. It's beautifully written and captures the cultural divide between Hmong parents who...
Skate soccer: 'This is all I got'
Rollaball is a film about a group of Ghanaian polio survivors who are pioneering an extreme sport that combines skating and soccer. Very coo...
Monday, September 17, 2012
Advice to parents on diagnosis day
Mothers and fathers were asked what they might have told themselves on the day their child was diagnosed in this video by Elizabeth Aquino. Thanks to Elizabeth and all of the parents who participat...
Sunday, September 16, 2012
Ben's get-away note
Ben refused to do his homework yesterday. He was very upset and signed that he was going to run away. He went to get a post-it note and pencil, in what I thought was simply a dramatic flourish. But this is what he produced. For an 18-year-old who couldn't write a year ago, this was solid gold. We high-fived and Kenold and I jumped around in excitement. Then Ben settled down and did his wo...
Friday, September 14, 2012
'Everytime I see her I feel guilt:' A doctor's story
An article in the American Journal of Medical Genetics on how geneticists can "improve their abilities to hear and honour patients' stories by writing and sharing stories with patients and with each other" is fascinating and heartening.
In 2010 we interviewed Dr. Rita Charon, who founded the Narrative Medicine program at Columbia University. She described narrative medicine as "the way a nurse or doctor or social worker or therapist...
The sun, the moon and the stars
Yesterday on the drive home from work I was thinking about writing a book. The Sun, The Moon and The Stars, I thought.
The stars were an image I used in a story I wrote about Ben's birth.
When I was pregnant with him he woke me with kicks at about 4 a.m. each morning.
It was dark outside and I would walk to the window and look up at the blinking stars and wonder who he was and where he came from.
The stars...
Thursday, September 13, 2012
After a disaster, outcomes split on gender lines
What happens to people disabled by disasters like the 2005 Pakistan earthquake?
That depends if you're a man or a woman.
A University of Alberta study finds most paraplegic women three years after the Pakistan earthquake were abandoned by spouses and families, while men with the same disabilities were not. The study was published in the July issue of the journal Disasters.
A survey of 73 adults in six remote villages...
Wednesday, September 12, 2012
Grace
Parents of children with disabilities face "back to school" with a particular kind of terror. That's because we know everything can be pulled out from beneath us. All the things that went right last year -- the learning gains, the tiny buds of confidence, our child's peace of mind -- can be erased by a change in teacher or principal, a new bus route, a missing piece of technology, a program that doesn't fit.
Like a wooden...
Tuesday, September 11, 2012
Hitting the jackpot
I really should start playing the lottery, something with a huge jackpot and low odds. I think I'd have a great chance of winning.
I have three children aged five and under. My first two children have special needs. My daughter has Prader-Willi Syndrome and my son has Duchenne Muscular Dystrophy. The odds of having two children with these two genetically unrelated disorders – both have random mutations –...
Friday, September 7, 2012
Falling down the rabbit hole of 'why?'
Blame game. That’s what my friend Ijeoma called an important blog she wrote last week.
“The doctors couldn’t tell me why Deane has cerebral palsy. They could explain what happened – that his heart rate slowed down and didn’t get enough blood to his brain – but they couldn’t answer why. And that’s the question parents of disabled children cry at their darkest times.
“Often the only answer they can come up with is it must be their...
Stepping into a new world
Lucas (above) is one of my favourite visitors at Holland Bloorview. He likes the Shrek character I have in my office. We have a game where I give it to him, he examines it, then throws it as far as possible from his stroller. Then we look at each other, smile and exclaim: "UH OH!" Lucas loves to run. After a few sessions of our throwing game he usually lets his mom know that it's time to go. He wants out of that...
Tuesday, September 4, 2012
Yes to synthetic happiness!
"Natural happiness is what we get when we get what we wanted, and synthetic happiness is what we make when we don’t get what we wanted."
Interesting Ted Talk by Harvard psychologist Dan Gilbert, author of Stumbling on Happines...
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