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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Fox or wolf?

I can't imagine how crazy-making it must be for my son to communicate.He can't speak. He uses sign language, but it's hard for him to manipulate his fingers into the correct positions because his hands are so weak. Most people don't understand sign, so we often have to interpret for him. And then there's the 'Dodo factor' of his parents to contend with, when he's signing something perfectly, but for some bizarre reason we can't make it out.This happened...

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Great reading

Here are links to several stories and blog posts that I found particularly interesting. The first is an article in the UK Times about the importance of disabled characters in children's books. It's written by a dad with a disability and talks about In the Picture, a British campaign to encourage publishers, writers and illustrators to include children with disabilities. This is one of the resulting illustrations! So Don't! And See What Happens!...

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