'He gets to do whatever he wants'

I want to get a copy of Karl Taro Greenfeld’s Boy Alone – a memoir about growing up with his brother Noah, who had severe autism, during the 1960s. But I’m also hesitant. It’s obvious from reviews that it’s a frank and painful account of how it felt to be the typical sibling in a family that revolved around one child’s challenging behaviours and inability to communicate. “I can feel the room tilting toward you whenever you walk in,” he writes of Noah, “all of the attention and parental love drains into you, never to come back out.” I know there...

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British families face prejudice, survey finds

Families of children with disabilities in the UK feel shut out of society due to negative attitudes and a shortage of services, according to a survey published this month by the charity Contact A Family. Nearly 70 per cent of 615 families said understanding and acceptance of disability in their community is poor or unsatisfactory. This is significant because there’s a general public perception that we’ve come a long way in improving attitudes toward children with disabilities, yet the reality for these parents is that they often feel their child...

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A family therapist talks about brain injury

I’ve always been humbled by the stories of parents whose children acquire severe brain injuries through traumatic accidents. One day they’re parenting a pretty regular kid. The next, they’re praying for their child’s survival. Then come months of inpatient rehab and the recognition that their child has significant learning problems, a different personality from the one they knew, and sometimes physical disability. Caron Gan, a family therapist at Bloorview Kids Rehab, is an expert in how brain injury changes families and how parents can cope,...

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When overnight camp eludes you

It’s taken 15 years, but finally my oldest kid is going to overnight camp. Most parents take sleepover camp as a given when their child becomes a pre-teen. For my younger daughter, it entailed filling out a two-page form and dropping her off on the start date. But for my older son Ben, who has multiple disabilities, it seemed we’d never find a place he fit. Many camps are targeted to typical kids and aren’t physically accessible. Others are open to kids with a very specific disability. For example, they’ll take a child with a physical disability,...

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The Enough House

Last summer, while reading Charles Dickens’ Great Expectations, I was surprised to come across reference to a mansion called Satis House – “which is Greek, or Latin, or Hebrew, or all three…for enough,” said the character Estella. “Enough House,” replied the protagonist Pip. “That’s a curious name, miss.” “Yes,” she said, “but it meant more than it said. It meant, when it was given, that whoever had this house, could want nothing else. They must have been easily satisfied in those days, I should think…” I want to live in the Enough House, I...

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