'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 are times my kids feel that way about my son Ben, the oldest at 15, but the youngest of my four developmentally and in stature. Ben has a rare genetic condition. He doesn’t speak, is weak and has pain in his joints, has hearing loss and uses sign language. He’s the size of a five-year-old.

He can’t carry the groceries up the 30 stairs to our house or do other things we expect of his siblings. He wears hearing aids but struggles to hear with background noise, so I’m constantly telling the other kids to be quiet so Ben can understand me. Or to hold their thought while I try to decipher what Ben is signing to me. Or to walk the dog, even though it’s Ben’s dog, but he can’t walk him. Or to pull Ben in the wagon, because his knees hurt.

“But my knees hurt too Mom!”

“Not like Ben’s do I’m afraid.”

Sometimes they’ll say things like: “He gets to do whatever he wants!” And it’s hard to explain that in reality, there are so many things they can do that he can’t: from riding a bike, to swimming and playing sports, or calling a friend on the phone. To even just having a friend. Ben doesn’t have any friends.

It’s hard for kids to understand that perhaps you go easier on their sibling because that child is already up against so much. Even though you know rationally that all kids – with or without disabilities – need responsibility and limits and expectations.

I often feel like my other kids have a depth and sensitivity to them precisely because Ben is their brother.

But I also worry about them resenting him and how our family has been defined by his needs. As Karl writes in Boy Alone in reference to his brother Noah: “I am learning that I can never compete with you…I will lose every race for our parents’ time and attention.”

Two brothers, battling autism

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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 and family is misunderstood and left out.

Other findings from the study:

• Over 60 per cent of parents say they don’t feel listened to by professionals and that their role is not valued by society.

• Almost half said they lacked respite care that would give them a short break, and childcare that would enable them to work.

• The survey references a British study showing that it costs three times more to raise a child with a disability.

Does your child and family feel understood and included in most parts of everyday life? Or does your child and family feel stigmatized by negative attitudes or ignorance? What can we do to improve understanding and acceptance of children with disabilities and their families?

Majority of families with disabled children face prejudice, says survey

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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, build resilience and help their child and family adapt.

Caron was interviewed in Washington by Brainline and I think these podcasts will be invaluable to parents of kids with brain injury and those who support them.

http://brainline.org/content/2009/04/brainline-talks-with-caron-gan.html

You can also read a compelling firsthand account of brain injury from a family on BLOOM:

Parenting a child through trauma: Survival tips from a family that’s been there

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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, but not a developmental disability. Or, they’ll take a child with a learning disability, but not behavioural issues. Or, they’ll take your child, but in addition to the camp fees – which are significant – you need to pay a private worker to accompany your child.

And what if your worker doesn’t feel like roughing it in the woods? One summer – before sanity kicked in – I found myself pricing nearby bed and breakfasts for a worker who didn’t want to sleep at overnight camp.

So I was excited this year when I heard rave reviews about Camp Winston, an overnight Ontario camp for kids with neurological disabilities like Tourette’s and autism, who also have challenging behaviour. A parent recommends the camp in our Summer 2009 issue of BLOOM. But when I contacted the camp to enquire about Ben attending, I was told there was a wait list of 500 children.

Five-hundred kids waiting for a spot at one camp! That’s enough kids to start a whole new camp. And I bet that’s just the tip of the iceberg in terms of children with disabilities who are waiting to attend a camp that meets their needs and welcomes them.

Camp Winston told us about Camp Kennebec, another Ontario camp tailored to kids with learning disabilities, behavioural issues and autism. We were impressed when the staff visited Ben and us at our home to describe the program and assess whether it would work for Ben.

They told us they’d get back to us in a week and I was on pins and needles, wondering if my boy would finally get a chance to experience camp life (and for my hubby and me to enjoy our first week of respite).

Ben was accepted for a week of camp, on condition that we were able to hire a worker to go to camp with him.

We didn’t qualify for any financial assistance for camp, so it will cost $1,900 for the one week of camp itself, plus what we pay our worker – a small fortune.

Does your child with disabilities attend overnight camp? What were the obstacles? Where did you find success?

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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 thought, where we are enough, just exactly as we are.

My son Ben was born with a rare genetic disorder and over time we learned he had many disabilities.

He’s 15 years old now, and we’ve spent most of his life trying to get him to do things he simply can’t: to grow, to hear, to speak, to write.

When he was a toddler, and still scooting on the floor while his peers stood up and ran, I remember bargaining with God that if he would just let Ben walk, I would never ask for anything else. At the time, we were struggling to put him through rigorous home physiotherapy exercises twice a day. Ben did eventually walk – albeit slowly and with pain in his knees – but I didn’t keep my end of the bargain.

Of course, it wasn’t enough.

There were years of special diets, a stomach-feeding tube and growth-hormone shots to get him to grow; speech therapy four times a week and trips outside the country to see specialists; and occupational therapy to improve his fine-motor skills. We tried every alternative therapy going. But in the end, none of these things worked. He never acquired speech, he can’t write
functionally and he’s half the size of his peers.

We live in a culture that values constant self-improvement. There’s always something to be worked on, some future state that will be preferable to the one you’re in now: a time when you’ll be happier, smarter, richer or more youthful.

I think that value seeps into the world of children’s rehab, and makes it hard for parents to feel blessed with who their children are, just as they are. We’re so busy “working” on things with our kids, trying to turn every interaction into a therapeutic one – that we can lose sight of their inherent wholeness. I used to long to read a book with Ben just so we could sit together, he in my lap, giggling at the funny parts – and not because it was a way of squeezing out one more word attempt.

But time was ticking, and he wasn’t meeting his milestones.

There’s a push and pull – especially early on – between wanting to accept our children for who they are and wanting to make the disability go away.

No parents want to look back and feel they didn’t do everything possible to promote their child’s development during the preschool years, when the brain is most plastic. And it’s easy to get caught up in the latest “magic bullet” treatment you read about in the media or on the web.

But sometimes, during those gruelling years of intervention, I wish I could have breathed deeply and told myself: “It’s enough. It’s enough that he’s alive, it’s enough that I love him, it’s enough that we have joy together.”

I wish I could have visited the Enough House more often.

Because in the larger scheme of things, enough is all that matters.

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