Tuesday, July 31, 2012

See this cat's face? It's me!

This is a picture I took in Normandy, France earlier this month. It's in Lion sur Mer, where my Dad swam as a 7-year-old child in 1927 on holiday and then, by bizarre coincidence, landed by boat 17 years later on D-Day plus 1 with the British forces.

There were a number of houses in this seaside village with cat statues on them like this one! I'm not sure if there is any special meaning to them, but when I was going through my photos I thought the expression on that feline's face mirrored the terror I felt returning home after three weeks vacation in France and Italy.

It wasn't actually on returning home that I felt terror. I was excited to be home and to see my kids again. And I'm happy to be back at work.

Last weekend was a flurry of activity getting ready to take Ben up to Camp Kennebec for two weeks. Was I going to be able to get it together on Saturday to completely pack Ben up for the drive on Sunday morning? It began with me and the camp 'to bring' list at Wal-Mart on Saturday morning at 9. After a couple of hours there I'd crossed most of the things off. Then it was a short drive to Old Navy to pick up a few extra shirts and on to Kumon to get his workbooks. That night D'Arcy would head out to Shopper's to get the flashlight batteries.

It seemed like a small miracle when we set off Sunday morning with enormous bags of comforters and bedding and a couple of suitcases marring our rear-view mirror.

And now I have two weeks of reprieve, of not having the constant care and worry and pressure that seem to be my companions in parenting Ben.

That's what returned after I'd been home from holiday a few days. I was aware of how much of my day revolves around thinking about Ben and worrying about his future. There are plans to try using Proloquo2Go again with Ben in the fall, to try to finally give him a reliable way to communicate. The school is keen. But part of me feels like we are continuing to force Ben into a mold that doesn't fit him. Because these voice systems aren't intuitive and user-friendly they are work for him. Hard work.

That there is never a let-up on trying to make him better blend into a world that isn't designed for him and people like him. And the anxiety and stress this creates for him and us.

He's made incredible gains (for him!) over the last year at school. But it's never enough. And it never will be. And the cost is always lots of anxiety.

I thought about it after I visited L'Arche in Trosly. I wondered what it would be like if Ben went off to live in a L'Arche community (English speaking, of course!). Rather than returning to a mainstream high school where he sticks out.

I don't believe Ben has any desire to move out yet. But I wondered. Where would he be happiest?

Then I considered that if I was to ask my other children if 'they' wanted to go to school, the answer would probably be no. So maybe I wasn't asking the right question.

Thursday, July 26, 2012

'Life is not just about achieving'

We had a tremendous response to our magazine interview with former Canadian Olympian Silken Laumann (above right), stepparent to daughter Kilee (left), 16, who has autism. Here is an uncut version which couldn't be squeezed in its entirety into the print issue. I know it had me thinking long and hard! Thanks Silken! Louise

 Silken Laumann rows into autism's turbulent waters
‘Life is not just about achieving, it’s about being present’ former Olympian says

Silken Laumann is a former world rowing champion and one of Canada’s greatest Olympians – winning two silvers and a bronze.

Less well known is the fact that in 2010, at age 45, Silken became a special-needs mom.

That year she and her partner David Patchell-Evans (known as Patch), founder and CEO of GoodLife Fitness, moved in together in Victoria, B.C., each bringing two children to their new family.

Patch’s daughter Kilee, 16, has autism and requires round-the-clock care.

The other children are William and Tygre, both 14, and Kate, 12.

For Silken, an elite athlete who once believed anything could be achieved through hard work, the reality of raising a teen with disabilities came as both a shock and a revelation. We spoke about her new life.

BLOOM: Tell us a bit about your daughter Kilee.

Silken Laumann: Kilee is 16 and she’s profoundly autistic. She talks but in a very limited way. She’s been diagnosed as cognitively disabled and operates around the age of two or three. She has episodes where she can have some pretty impressive meltdowns. That said, Kilee is a very passionate person. She has this really happy, loving energy a lot of the time. She loves to be active like her dad – hiking and swimming. She's a downhill skier who's skied double-black diamond. She's passionate about food. And she loves the other kids.

BLOOM: Were you exposed to disability before parenting Kilee?

Silken Laumann: I had a level of comfort because I volunteered at Ronald McDonald House, and we had quite a few kids with special needs come through the houses. And as a high-profile Canadian, I had spent a fair amount of time visiting kids in hospitals, including Holland Bloorview. But I certainly didn’t know much about autism and my exposure to disability wasn’t deep.

BLOOM: What was it like to become a parent to a teen with autism?

Silken Laumann: It's been quite a journey, as you can imagine. The first time Kilee grabbed me by the hair, I did everything wrong. I screamed. I fought back. I cried. I'm an Olympic athlete trained to jump out of the starting gate with a heart rate of 175, and I reacted like a woman being attacked in a dark alley. It wasn't rational and I was ashamed and embarrassed afterwards. She was crying and I was crying.

It's been an upward positive swing from there as far as me managing my emotions around Kilee's physical outbursts – which happen less and less. I'm better at respecting her boundaries and I can see the signs of her escalating. I'm much more in tune with her energy when it starts to switch, so I'm much less likely to be in a situation where she grabs my hair and starts to pull.

I went into the marriage believing it was the right thing to do for all our kids and that it was the right thing for our relationship and that there would be more to gain than to lose by coming together as a family. But all along there’s been this discussion of what if she hurts one of the children? What if we can’t handle it? There were some ‘what ifs’ we had to get through, and I kept saying I believe it will work out. There are things we can do if things get really bad, such as living separately for a while. My number one job as a parent is to keep my kids safe so if I ever felt that wasn’t possible we’d have to change our living arrangements. But we’ve been able to get the help with Kilee that she needs and she’s more settled in her outbursts.  

BLOOM: What were the first few months living together like?

Silken Laumann: I don't think anything could have prepared me for it. At the time I thought I was doing okay and I thought it was going well, but in retrospect it was really hard. Kilee moved from London, Ont. to British Columbia, which, as you can imagine with autism, was very traumatic for her. Her behaviour escalated within three weeks of moving out and we had outburst after outburst. Unlike my other kids, Kilee couldn't yell and say 'I hate you.' She'd come running at me or biting her hand or jumping up and down like a two-year-old. In the beginning I was far too judgmental. I didn't always separate the behaviour from the person. I couldn't see how much she was struggling.

I'd get really angry at my husband too, thinking he didn't have enough discipline around setting boundaries for Kilee. It took me a while to get it – to start to understand the complexities of the situation and the complexities of Kilee.

This is what happens with so many special-needs children. People just see the top layer and sometimes the top layer is not the best layer. With Kilee, as time went on, I saw layer after layer after layer. And as I have learned to be more still with her and much less judgmental, I can see just how vulnerable she is, just how hard she’s trying, and just how frustrated she sometimes feels. And we're learning a language together on how to express that in a more helpful way than hurting or jumping or screaming.

I’ve come to understand that cause-and-effect consequences don’t work with Kilee. That was hard for me because I’ve parented my children on natural consequences. But that doesn’t work for Kilee. If she throws her lunch out the window – which she did the other day on the drive to school – you can’t just not give her lunch.

When my other kids’ behaviour stunk, I always tried to look at the antecedent, knowing it wasn’t just about what was happening in the moment. But with Kilee it’s so much harder to figure that out, because she’s so limited with language about emotions. You have to pay so much attention.

In the beginning it felt like Patch and I were always problem-solving around Kilee and I was so afraid my kids would feel this was 'all about Kilee.' It was important for me to say there will be certain accommodations made for Kilee, but the whole family will not be centred around one person. When Patch suggested putting locks on doors I said no, there's a point for me where we're not turning this into a group home. This is a family and everyone is important. Something that really helped was hiring a caregiver in the evening hours so we could give more equal energy to the kids.

BLOOM: What have you learned since Kilee came into your life?

Silken Laumann: I'm a very impatient and demanding person – demanding of myself – and that trickles over to people around me. One of my lifelong journeys is to not be so impatient and to not be so definite and confident that I know what needs to be done. Because with Kilee, none of that works. In fact, what's needed is the exact opposite.

With Kilee, 90 per cent is feelings, not verbal communication. When she's vibrating high I can physically feel this big energy. And when she's going off into a dark energy, you feel it and see it in her eyes.

Having Kilee in my life has made me slow down, and shown me how fundamental it is to focus on the positive, because positive reinforcement for Kilee is so important. I need to look at what I can do to encourage her and compliment her, even when she's acting out, because sometimes the best way to help her switch gears when she's sobbing or biting her hand is to start talking to her. I'll say: 'Oh Kilee, you're such a good girl and you have such a big heart. And we love you so much.' And I keep going at it and feeling it with her. Because I know that in that moment she's beating herself up.

BLOOM: I was raised with the idea that if you simply tried hard enough, anything was possible. It took a long time in raising my son with disabilities to come to the realization that that was a platitude that wasn’t true – that I didn’t control the outcome for my son and I couldn’t ‘fix’ him, nor was that a healthy aspiration.

Silken Laumann: My husband stills hold onto that dream that he's going to fix Kilee and she'll come out of autism, but for me it's easier because I've come into her life later. She’s still learning a lot, but I don't thinks she's coming out of autism.

When I've got myself into trouble has been when I get in that mode of being judgmental – seeing things that other people are doing wrong or reading books and thinking I know it all. I'll get all enthused about this or that therapy – like behaviour therapy – forgetting that they've already done it with Kilee and it was a really negative experience for her and didn't work. I realize now how arrogant that was. When I've gotten on my little high horse and preached is when things have been most stressful for Patch and I and when I've had the least amount of acceptance for Kilee.

Something we’re working on right now is having Kilee not pee in her bed. She gets terrible rashes. A year ago, I had it all mapped out: this is what we’re going to do and this is how many nights it will take. I got an alarm system for the bed and a bit of a schedule. Then I’d get frustrated and angry when she didn’t make progress. Now I think: Let’s not have any judgment around it and assume she’s trying her best.

BLOOM: How have your other kids adapted?

Silken Laumann: William has always just seemed to get Kilee and could communicate with her beyond what any of us could. He would tell us what she wanted: 'Mom, she doesn't want to do that' or 'Mom, she feels like this when you say that.' It took my daughter Kate longer to relax to enjoy Kilee because at one point she had a physical fear of Kilee, which was legitimate because Kilee outweighed her about three to one.

It's funny the things they're jealous of: just the other day William went on about how Kilee has her own bathroom in her bedroom. And I said of course she has her own bathroom, she's up 20 times a night and the bathroom is the biggest blessing. But I'm the oldest, he said. I tried to go a little deeper because I thought this really isn't about the bathroom. And then he said: She's also got an iPad and I don't. So I gave him permission to feel angry, and to tell me that Kilee doesn’t get in trouble for her bad behaviour, that we have to leave the room and it should be Kilee. He was angry about a whole bunch of stuff, and I need to respect that this isn’t always easy for the kids. I believe though, that my kids will gain more from having Kilee in their life than they’ll be hindered. I believe it makes them all better people. My biggest issue when it comes to Kilee and all the kids is safety. My number one job is to keep all my kids safe.

BLOOM: How has being an Olympian champion made it harder or easier to accept Kilee?

Silken Laumann: Where it's helped is that I'm very strong and determined. Given some of the challenges we've had – bringing not only a blended family together but bringing a family with a profoundly autistic child together – I think I have a huge capacity for energy and endurance. And a lot of that came from being an athlete. Some of it is just my character. It's helpful to have a high level of energy, to know yourself well, and to be honest with yourself. I can't imagine having a child with a really challenging disability at age 25 when you’re still discovering yourself. I have a huge amount of empathy for Patch and his previous partner Tammy and what they went through in those early years.

BLOOM: Have you reevaluated some of your values and beliefs?

Silken Laumann: In my days as an Olympian I think I had a naïve idea that I had more control over my life than I actually had – and I was much more controlling and determined that through hard work anything could be achieved. I thought that you just keep going at it till you solve the problem. But human beings aren't like that. We don't solve our own problems that way. And that's a journey I've been on for over 20 years.

I’ve discovered that life is not just about achieving, it's about being present. It's not about being in control but opening up every day to the wonders that life presents to you. And that happens in your heart, not your head.

With Kilee there are still times when that Olympic athlete comes out in me and I'll say 'We're going to do this and this, and this will happen' but I know that doesn't work.

More and more, every single day, I see Kilee for who she is. And every time we try to tell her who she is and this is what she's going to do, she feels a sense of failure.

For example, 'You're going to learn to write your name.' Well, that may never happen for her. And as a parent of an autistic child you're riding this fine balance: you don't want to give up trying different things because there might be a piece of the puzzle that gets put together, but you want to accept your child for who they are. If you’re always saying 'I'm only going to listen to you if you talk in full sentences' you can’t enjoy your child. You can’t see their gifts.

BLOOM: How has Kilee changed your family?

Silken Laumann: She’s slowed us down. Patch is so high energy and so are the other kids and I. Kilee brings us all to a level of peace and slowness. We slow down for her and spend more time at home because of her and it's a good thing.

William is an almost 15-year-old boy who's 6 foot 4 and I can't think of a more awkward age to have a profoundly and obviously different sister. But he introduces his friends to Kilee and answers their questions. He includes her. If they're all going out to the hot tub he'll ask her if she'd like to come. It's the same with my daughter. It's she's beading, she'll bead with Kilee. I never get the feeling that my kids spend time with Kilee because they have to.

BLOOM: Do you look at life differently now?

Silken Laumann: As a parent there's a tendency to constantly be looking forward – to when your kid finishes university or when you figure out your daughter's dyslexia. You’ve always got something to look forward to. With Kilee, there’s this knowledge that she’s going to be in some ways a child for a long, long time. She's growing up but her needs are still very much that of a child: she needs 24-hour supervision.

It makes me feel more patient about life. It's not about what will happen tomorrow. It's more about today and being together and enjoying. I know a lot of parents of kids with disabilities worry a lot about the future. I don't. I've taken enough risks in my life and had enough disappointments that I have this feeling very deep within me that no matter what happens with Kilee, even if her behaviour escalates, we'll have the strength to make it through.

Patch is more concerned. He gets really worried about things. We’re very fortunate in that we have the financial ability to provide Kilee with the support she needs for the rest of her life. That's huge and I will be very open in saying that. I know there are many parents who don't have that kind of support. Their worries are different from ours. Our worries aren't financial – they're around her happiness and safety and we have more options than a lot of families.

BLOOM: I don’t know of many blended families that include a child with disability. Do you bring an objectivity that is harder for a biological parent to have?

Silken Laumann: I think I do bring fresh eyes. I love Kilee and more and more, as time unfolds, I love her as I love my own children. But there is a difference – and most stepparents would say that, particularly in the beginning. You've had your children your whole life, you've given birth to them, seen them as babies. I didn't have that with Kilee. I didn't climb the mountains Patch climbed with her. I have an objectivity that he can’t have.

The thing he does have is a sense of failure – that he didn't do enough. I think guilt is something parents have anyway, but 10 times more when you're the biological parent. You read these books and they tell you that if you do everything right you're supposed to cure your kid and take them out of autism. But most kids don't come out of autism.

At 16 Kilee is profoundly autistic. If there's a scale, it's easy to say we failed. She's not doing as great as this kid or that kid. Patch carries a level of guilt about that. I know it's irrational and I know it's not helpful, but I get where it's coming from.

I do have a child diagnosed with ADD and dyslexia and the other with dysgraphia, but these are mild learning issues. And even then, I’ve had guilt: Was I structured enough? Maybe if I’d been a different kind of person they wouldn’t be so affected.

BLOOM: I’ve come to the conclusion in raising my son that we are largely ‘gifted’ with our abilities at birth, as opposed to ‘earning’ what we get in life through hard work. What do you think?

Silken Laumann: We laud intellect in our culture. We applaud achievement to the detriment of everything else. And when you're talking about achievement for Olympic athletes, you have to be born with the body. I was born gifted physically and I did a lot with that gift. But I couldn't have done anything if I hadn't had the gift physically.

People talk about (natural) physical talent and hard work in sports, but they tend to downplay the physical talent and that's huge in Olympic athletes.

BLOOM: Do you ever feel burdened by people’s attitudes about Kilee’s behaviour?

Silken Laumann: What I tell myself now is it's not my business to get into other people's heads. Last fall we were in Sidney, Victoria with Kilee. She has these plastic animals that are like comfort objects she likes to carry. We walked by this toy store and they had these really high-end animals in the window and she lunged into the store and started clearing the shelf. People are leaving the toy store and Patch and I are trying to get her out of there. We can’t stop to explain and I’m hoping that people get it at some level – that it's not our fault and it's not her fault. Usually we go back afterwards and explain.

BLOOM: Moms of teens with autism have been found to have stress levels that mirror that of combat soldiers. How do you manage stress?

Silken Laumann: As mothers, it's the most challenging thing to look after ourselves. It's been drilled into our heads that we sacrifice for our kids and we give up for our kids. I say hogwash. We are human beings. We need to be constantly renewing our energy so we have the capacity to give emotionally. You can't do it if you run out of life force.

I see moms in particular who have given up everything for their special-needs kid and I get it – sometimes who else do you go to? And I don’t want to give them something else to feel crappy about.

But I think we can fool ourselves when we get into a place of seeing ourselves as indispensable and thinking that no one else can care for our child. It won’t kill your kid to be misunderstood by a caregiver once in a while so that you can keep yourself sane and happy. At the end of the day, moms who aren’t looking out for themselves will die younger, have health problems, a poorer quality of life and far less emotional capacity.

You have to constantly look for opportunities to take care of yourself. When I go to my son’s soccer game, I’ll put on my running shoes and walk around the field, and every lap I’ll stop and do squat jumps and push-ups.

Silken Laumann is writing her autobiography and training to be a life coach. She is a spokesperson for GoodLife Kids Foundation, which funds programs to ensure every Canadian kid lives an active life. Silken says she finds balance in her own life through yoga, exercise and art. Photo by Beth Hayhurst.

Wednesday, July 25, 2012

A one-of-a-kind wedding

Tuesday, July 24, 2012

Study of tri 13, 18 finds joy in short lives

A Pediatrics study of 322 parents who chose not to terminate children with trisomy 13 and 18 finds that while most were initially told their child was 'incompatible with life' and would suffer, 97 per cent later described their child as happy, despite severe disabilities, and enriching their families, even when their lives were short.

A good summary appears in this piece in Science Daily:

Children with trisomy 13 or 18, who are for the most part severely disabled and have a very short life expectancy, and their families lead a life that is happy and rewarding overall, contrary to the usually gloomy predictions made by the medical community at the time of diagnosis, according to a study of parents who are members of support groups published July 23 in Pediatrics.

And here on Medline Plus.

The study was co-authored by two neonatologists and parent Barb Farlow (in photo with daughter Annie, who had trisomy 13, above).

A blog by Montreal neonatologist Dr. Keith Barrington comments on the study and offers these suggestions to health professionals working with families:

1. Don’t say that this is ‘incompatible with life’ or ‘lethal;' anyone can go on the internet and find very quickly that you lied to them.

2. Don’t say that if they survive ‘they will live a life of suffering.' Parents do think that their child had more pain than others, but they also had many positive times, and their overall evaluation was positive.

3. Human beings are not vegetables. These children are conscious and interact, even if at very limited levels. Carrots don’t.

4. Don’t predict marital disharmony, or family breakdown. You can’t see the future, there is no evidence at all that this occurs more when a family has a baby with severe impairments, and indeed in this admittedly biased sample the divorce rate was far lower than the US or Canadian average.

4. Families find meaning in the lives of their children. Whether those lives are unimpaired or lived with severe impairments. Whether they are very short or not.

5. Don’t suggest that the child is replaceable. Sometimes parents will bring up the idea that they can have another child, that is fine if they do so, but for you to suggest it really shows that you think this child is worthless.

6. Don’t say that there is nothing you can do for them. There is a lot you can do. Empathy and a positive attitude can be a great help. Finding resources, respite care, enabling appropriate medical care, these are all things that you can do for them.

7. Be very explicit about medical decision making, come to an agreement about the limits of medical interventions (if you can’t, then find them another doctor who can); and be open to changing the plan as time goes on.

8. Refer to the child by name if there is a name. (Annie has often recounted to me that when she sees parents antenatally with a serious diagnosis she will ask them what the baby’s name is. They often become teary and tell her it is the first time anyone has recognized their fetus as being a real potential human being...)

9. Above all recognize that these babies are human beings who will be loved, who will be cared for, who will leave a positive mark on their families, and who deserve respect.

Sunday, July 22, 2012

Where friendship is the highest good

We'd just met that afternoon. But when I asked Olivier Caupin if we could have our picture taken, we embraced naturally like old pals. Just before the photo was taken, Olivier placed his head gently but purposefully on my shoulder.

"You are accepted," his gesture seemed to say.

It was the first of many surprises during my visit to L'Arche (The Ark) in Trosly-Breuil, France -- the birthplace of a community that brings together adults with intellectual disabilities and young adult volunteers known as assistants. The model, conceived by humanist, philosopher and theologian Jean Vanier, now operates in 40 countries.

Olivier was our official tour guide of the first L'Arche community created in 1964. It includes six homes, numerous workshops and greenhouses, a pizzeria and two stores where residents sell handmade soaps, mosaics and candles and homegrown fruit and vegetables.

Trosly-Breuil is a centuries-old village of white stone cottages with white shutters and beds of red roses, at the edge of the lush green Forest of Compeigne, about an hour north of Paris. L'Arche fits seamlessly here. Other than a small sign on the main office, there was nothing that set it apart as a place for people with disabilities.

"We propose to people with disabilities and every assistant to share the same life in the same homes and very simply," said Bénédicte Millet, a former speech therapist who heads a team of staff who support volunteers. Bénédicte, who has lived here for 21 years, spoke to me in English because I couldn't speak French. "We make a family atmosphere," she said.

Most important: "We take the time together to pay attention to everybody and to speak with everybody. To pay attention to those who never speak or who are sad. And to speak to those who are talking too much!"

That's what it was. Each person was acknowledged and valued. "It feels like a village," I said, referring not to it size but to its welcoming atmosphere.

"The message of L'Arche is that people with disabilities have something to teach us..." said Bénédicte. "They have the gift for relationships and we have to learn from them the ability of friendship and tenderness, not competition. We help everyone -- assistants and people with disabilities -- to grow in this capacity."

Olivier showed us around workshop number 2, where more than a dozen workers laboured over projects including small-scale assembly work and packaging of products. A few people were placing small metal pieces into trays of 30 slots to be used in the steering-wheel mechanism of cars. "My mother works at Channel," Olivier told us, explaining that this connection had led to a project packaging makeup. The workshop was part warehouse, with completed items stacked in boxes.

Olivier had a slight stutter and when his thoughts got stuck in production, he closed his eyes tight then blinked, as if willing the words to life. Because my French is so poor, my husband D'Arcy translated. Olivier shared the one phrase he knew in French and English: "Je t'aime. I love you."

Two young women approached and shook our hands warmly. One pointed to my hat. "Do you not have hair?" she asked in gestures. "Could you take off your hat?" I did and she opened her eyes wide and laughed. She didn't adhere to the social etiquette that would prompt someone to pretend they hadn't noticed my alopecia, which makes me different. Our culture's "addiction to the illusion of perfection," which author Ian Brown spoke about at a BLOOM talk, was noticeably absent at L'Arche.

Olivier took us outside and a tiny white dog trotted by. "Is that your dog?" I asked. "No!" Olivier exclaimed, pointing to a fine line that ran from his nostril to his lip and explaining he had been bitten by a dog as a child.

When asked about his favourite things, Olivier said: "Moi, j'adore le football." In addition to playing soccer, he said he liked swimming and horses, all activities he enjoyed at L'Arche.

We entered an art studio. People in smocks sat in a rectangle of facing tables placing small coloured tiles into elaborate mosaics of trees and people. One man was putting clay through a press. The scent of melted parrafin laced with fragrance wafted in from an adjoining room where candles were being made.

People were busy, focused and quiet. It wasn't immediately clear who had disabilities and who didn't. I had the sense that people wanted to be here -- unlike some programs where people with disabilities are cajoled into doing something they're not interested in.

Assistant Jean-Patrice Kroczek, a slight, middle-aged man with wire-rimmed glasses working on a mosaic, said he found work at L'Arche "very enriching."

Jean-Patrice told me he had lived and worked at L'Arche since 1976 -- 36 years! I was stunned, given popular values about work, success and climbing the corporate ladder, and asked why. "I've always liked being with people who are marginalized, because if it was me, I wouldn't want to be marginalized," he said. Jean-Patrice said people at L'Arche didn't "talk about handicapped people because we talk about working for everyone." Instead, he used the word "gifted" to describe the residents with disabilities. He said his time at L'Arche had taught him about personal relationships.

Hungarian Lilla Gyuris, 21, who came to volunteer last September, said she planned to stay another year. "It's very hard to explain what I've learned," she said. "I found life here. I found a family. And friends. When I arrived, I didn't know what to think. I thought (people with disabilities) weren't normal, but it's not true. Everyone is handicapped a little, and everyone is normal. I can't drive, that's my handicap. And when I came here I couldn't speak a word of French. That's a handicap."

The original L'Arche has grown over the years. Today, in each of nine homes in the village and surrounding area, seven people with disabilities live with a team of four to five assistants. One house serves people with physical and intellectual disabilities. While youth 18 and over have volunteered here from all over the world, candidates are now accepted only from Europe.

"Some assistants arrive with a lot of diplomas and are very intelligent, and others arrive with nothing, having had no success," Bénédicte said. "What we propose is the same for all: to clean the house, to buy and cook the food, to wash the plates after dinner, to make family life. For a lot of them, this is a new life. They're used to studying or eating alone and having their own life and suddenly we are all together and paying attention to everybody."

Six of the 10 assistants who began last September have chosen to stay a second year, Bénédicte said. After volunteering for a year, they will be paid. L'Arche is funded by the French government.

"When Jean Vanier started in 1964 there was nothing for (youth) with disabilities after age 14 or 15," Bénédicte said. "In 1960 a father of a young man with disabilities bought a home in Trosly to house 30 men aged 15 to 25. But it was run like military life with everyone getting up at the same time, going to sleep at the same time and walking two by two in Trosly in the street. There was no possibility for choosing what they wanted."

A priest who was disturbed by the home's regimented lifestyle asked Jean Vanier, then studying theology in Paris, to visit and assess the situation. Vanier "bought a small house in the village where he lived with two young men and was then asked to become the director," Bénédicte said. Over time, the project and its homes grew.

The idea was "to propose family life for the mentally handicapped and a place where they could choose what they wanted to do," Bénédicte said. Vanier, a professor of philosophy, called upon his university students from Canada, England and Paris to consider volunteering. "They were very interested in the project and many came. Social services observed the homes for two years and saw that with less money L'Arche was doing more than the other institutions. So they accepted L'Arche as an institution like the others and we receive money for everything."

While L'Arche is based on community life, residents who decide they want more independence have the opportunity to live, with support, in studio apartments in Compeigne, a nearby city. Bénédicte noted that two residents just got married and others choose to live as couples.

She said parents' expectations for their adult children often change once they see them blossom at L'Arche. "At the beginning, sometimes they want the child to become able to read and write, but more and more, they can understand that that is not the most important thing," she said. "When they see their child happy, with a lot of friends, and with a good life, a very interesting life," they are satisfied.

Thursday, July 19, 2012

Pushing forward

Tracey Bailey is a former Bloorview client, and the newly-appointed President and CEO of the Holland Bloorview Kids Rehabilitation Hospital Foundation. Here, she discusses the challenges of fundraising for children with special needs and how growing up with a disability helped her to achieve career success.       

Story by: Megan Jones

Ideas unlimited

Scientist Tom Chau, head of the Bloorview Research Institute, discusses his latest work and the importance of innovation in the field of childhood disability. Tom recently received U of T’s Inventor of the Year award.  

Story by: Megan Jones

Play about Down syndrome extended

Last Friday, I was lucky enough to see Judith Thompson’s play RARE staged in Toronto. It was equal parts hilarious and uplifting, moving and devastating. Through their stories, the actors’ voices and experiences came alive onstage.  Photo by John Gundy.

RARE, a Toronto Fringe Festival play starring nine adult actors with Down syndrome, will return briefly to the stage in August. After being staged in July as a part of the regular Fringe Festival, the show has been selected as one of eight best-of-Fringe plays to run repeat performances.

In RARE, actors tell their real-life stories, sharing their fears, desires and perceptions of disability. No subjects are censored, with performers exploring topics like death, sexuality, and their simultaneous hatred of and pride in their own disabilities.

Cast members, like Dylan Harman, hope that the play’s frank discussions will prompt audiences to re-evaluate their treatment of individuals with developmental disabilities.

“I hope they will learn to speak to people with disabilities like adults,” he says. “Because we’re human too.”

For other cast members, the play functioned as a personal growing experience. Actress Krystal Nausbaum, who performed in the American film The Memory Keeper's Daughter, says that working in RARE was uniquely rewarding.

“It’s really different than other plays…,”she says. “I can relate to these stories.”

RARE will be staged August 1-3 at the Toronto Centre for the Arts. Tickets are available online through Ticketmaster, or at the centre’s box office. 

Story by: Megan Jones

Monday, July 16, 2012

In harm's way

Children with disabilities are nearly four times more likely to endure abuse than their non-disabled counterparts, concludes a study commissioned by the World Health Organisation (WHO). The study’s results were published on Friday in the Lancet.

According to the report, children with disabilities are 2.9 times more likely to experience sexual violence and 3.6 times more likely to endure physical violence than non-disabled children.

Kids with mental illnesses and intellectual disabilities are among the most vulnerable, facing a risk of sexual violence 4.6 times greater than their non-disabled peers. Difficulties with communication often increase the likelihood that children will not be listened to, understood or believed in the event that they report maltreatment.

The study also found that kids living in institutions face a higher risk of abuse than those who live in family homes.

The report is based on data from 17 different existing studies from high income countries like the United States, Sweden, Finland and Israel, among others. Overall, it reflects data from over 18,000 children. Of the children with disabilities studied, 27 per cent overall had experienced some type of violence, including physical or sexual abuse, and emotional neglect.

Researchers say the increased risk of violence results from the stigma, discrimination and lack of knowledge that surround disability. They also point to the dearth of social support for caregivers as a factor.

Those working on the study hope that by exposing and highlighting risk, the research will lead to better care practices and the implementation of more serious abuse prevention strategies for children with disabilities.

They also mention the need for research into abuse rates in mid-to-low-income countries, where rates of disability and chronic illness tend to be higher, and support services are few and far between. Currently, little to no data exists for these areas.

Story by: Megan Jones