Grief: an unlikely friend

This post is dedicated to Erika at The Flight of our Hummingbird. When my son with disabilities was younger, I often felt a failure because I still grieved for him. Why did I feel sad, mad, guilty and anxious – when I adored my son and he brought me such delight? Here are some of the reasons. I couldn’t give him a clean slate in life. When I shared the joyous news of his arrival, I had to mention his suspected genetic condition, and worry...

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For the love of Annie

By Louise Kinross When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy "was immediate and innate, and in complete contrast to what I thought I might do," says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. "It was very important to us that she not suffer unnecessarily, but we...

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Sweet dreams

I recently heard about a family with two children with disabilities. Dad sleeps with his son with autism in one room, and mom sleeps with the child with a physical disability in another room. Sleeping with a child past the time considered normal is part of life for some families of children with disabilities – for a number of medical, behavioural and developmental reasons – although it’s rarely talked about. Maybe your child has seizures or...

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The politics of funding

By Louise Kinross I was putting together the science roundup for the December issue of BLOOM magazine and couldn’t help noticing that six of eight recently published research studies about childhood disability focused on autism. Given autism affects one in every 150 children, it wasn’t surprising that a large chunk of research dollars would be invested in treating this disorder. But I wondered whether funding to develop treatments for, or improve...

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If you could read my mind

Parents of children who can’t speak or gesture understand why a device that decodes likes and dislikes by measuring brain activity ranks as one of the 25 Ideas That Are Changing the World in a Toronto Life Magazine feature this December. Idea number eight is an optical brain imaging system developed at Bloorview that decodes preference – with the ultimate goal of opening the world of choice to children who can’t speak or move. Wearing a headband...

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In the trenches

Mothers of teens and adults with autism are as stressed out as combat soldiers, according to a study published in The Journal of Autism and Developmental Disorders and reported yesterday on the New York Times Motherlode blog. Researchers followed a group of mothers and their children for eight days, interviewing moms at the end of each day and on four days measuring hormone levels associated with stress. They found the level of chronic stress...

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My son's riches

I call them angels. Exceptional people who have been drawn to work with my son Ben and who have surpassed all expectations. There’s a long line of workers. ‘Worker’ is a misnomer and inadequate to describe those who have been teachers, visionaries, therapists and coaches in their own right. There was Kathleen, a bouncy, bubbly young woman who spent six years with Ben – transforming herself into a speech therapy, technology, sign language,...

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A cross-country quest for therapy

In 2006, Stacey and Jonathan H. uprooted their family from Ontario – where they had family and friends and Jonathan worked as a teacher – to Calgary, a province Stacey had never visited. The year before, their twins Will and Owen, 2, were diagnosed with severe autism and they were still on a wait list for publicly-funded applied behaviour analysis (ABA) therapy. The family moved west in the hopes of getting co-ordinated, provincially funded ABA...

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This and that

This post is a mixed bag.Saturday was the first night we went trick-or-treating with Ben in a wheelchair. We used to pull him around in a wagon (because he’s tiny), and he would hobble up the stairs to people’s doors or we would carry him on our backs.But this year it made sense to use his new wheelchair, which he now uses whenever he’s out.It was an eye-opener to realize how many homes were inaccessible, with two to three steps up to the path, and...

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My boy, the ladybug

Last night I spent four hours sewing black fleece spots on a red tuxedo jacket with tails. Halloween is my son Ben’s favourite holiday of the year. Weeks before, he begins asking everyone, in sign, what they’re going “to be.” You’d think that after all these years I’d be proactive and have his costume ready months in advance. Instead, I wait till the night before. First I race around the large local thrift store, looking for a bargain. But as...

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Laughter is 'a spark of light'

Amateur comedian Lloyd Ravn (left) has raised over $3,500 for Bloorview Kids Rehab through Laughs for Possibility, a comedy showcase he organizes that features some of Canada’s funniest people. Lloyd’s son Eric (right) has received inpatient and outpatient therapies at Bloorview, as well as attending one of our community nursery schools. In this guest blog, Lloyd explains how Eric’s journey inspired him to enter the world of comedy, and how...

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Giving Thomas a voice that's cool

In 2003, Richard Ellenson (left) convinced the City of New York to design two classrooms that would allow his son Thomas (right) and seven other children with disabilities to take part fully in kindergarten at a public Manhattan school. Thomas has cerebral palsy and doesn’t speak or walk.A year later, frustrated by technology that didn’t support the fluid communication he wanted for his son, Richard sketched a product more in keeping with his...

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No man's land

Elizabeth Aquino (left) is a Los Angeles writer and a fierce advocate for her daughter Sophie (right), who she writes about on her blog: A moon, worn as if it had been a shell. In this essay, she recalls the moment when she recognized that neurologists and science had no practical answers for treating her baby’s severe seizures. At the time, she lived in New York. The essay appeared in the Dec. 2008 online issue of Exceptional Parent Magazine....

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The good doctor

My previous post described our harrowing experience with the first pediatrician who examined our son an hour after he was born. Thankfully, we had another very different experience with a doctor who assessed Ben when he was three days old. The story continues the night Ben was born... The doctor thought it was a chromosome problem, but he didn't know what, and when pushed by D'Arcy, he said Ben had a 50 per cent chance of having brain damage. How could we figure out what Ben needed? Could he see a geneticist? There was nothing to be done that...

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How could my son's birth be 'wrong?'

They are words that will be seared in your memory – as fresh and raw as the day you first heard them.When you learn your newborn has a disability or health problem, the words a doctor uses to share the news can build you up or tear you down."He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," the doctor told us. He was obviously annoyed at being called out at that time of night and he didn’t like what he saw.Ben – the sacred being...

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