Bloom summer 2013

SUMMER 2013

AROUND THE WORLD

WILD RIDE British director deals in emotion at home and on stage PARENT TALK

Grandma is a specialneeds parent x 2 ROLE MODEL

Circus performer adapts to life with paralysis CARE NOTES

Writing gives kids the power TRAILBLAZER

Jean Vanier: ‘We are born in weakness...

We die in weakness’

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SUMMER 2013

BLOOM speakers

BLOOM is a how-to magazine on parenting children with disabilities.

BLOOM gives voice to the joys and challenges of special-needs parenting by combining firsthand family insights and the best professional advice.

We believe that every child blooms in his or her own unique way.

BLOOM is published two times annually and mailed to Holland Bloorview families and parents and professionals who ask to be on our list.

CONTRIBUTORS PUBLISHED BY: Holland Bloorview Kids Rehabilitation Hospital WRITER AND EDITOR: Louise Kinross DESIGNER: Sara Purves PRINTER: Continental Press HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL Holland Bloorview is Canada’s largest children’s rehabilitation hospital.

Our vision is to create a world of possibility for kids with disability.

We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life.

DISCLAIMER Articles in BLOOM are not a substitute for professional medical advice. Resources listed and opinions expressed in BLOOM do not not signify endorsement by Holland Bloorview. Where appropriate, please consult your physician.

CONTACT US EMAIL: lkinross@hollandbloorview.ca TEL: 416.424.3866 or 800.363.2440 FAX: 416.425.9332 WARMLINE: 1-877-463-0365 MAIL: Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto, ON M4G 1R8

Everyone knows Carly Fleischmann, the teen with autism who was unreachable till she typed a message on a computer at age 10. Meet her dad Arthur, author of Carly’s Voice: Breaking Through Autism, at a BLOOM speaker night.

Tues. Sept. 17, 7-9 p.m.

Holland Bloorview Family Resource Centre RSVP by e-mail ndyke@ hollandbloorview.ca.

Book a playroom spot by Sept. 13 at 416-425-6220, 3438.

Parent-to-parent support Parent Talk Share information and support with other parents at Holland Bloorview. One group for parents of children with a variety of disabilities; one for parents of kids with autism; and one for parents whose children are inpatients.

Call 416-425-6220, ext. 3319.

BLOOM named a ‘must-read’ by The New York Times’ Motherlode parenting blog April 26, 2013

Bookshelf Still Point of the Turning World, Emily Rapp, 2013.

An author who wrote about growing up with a disability is forced to reevaluate parenting when her baby is diagnosed with Tay-Sachs, a degenerative, fatal disease.

The Reason I Jump, Naoki Higashida, 2013. A Japanese teen with severe autism uses an alphabet grid to painstakingly spell out his answers to the questions he imagines others wonder about him.

Make a difference in research

The Parenting Journey: Raising Deaf and Hard-of-Hearing Children, Karen Putz, 2012. A parent who grew up with hearing loss and became deaf learns that she doesn’t have all the answers when her own children begin to lose their hearing.

A family engagement committee working with the Bloorview Research Institute seeks parents who can review research proposals online and provide input. Call 416-425-6200, ext. 6240.

Me Before You (fiction), Jojo Moyes, 2013. An ordinary young woman takes a job caring for a once high-powered business man who, paralyzed in an accident, feels life is over.

Parent Voices Hop onto Facebook and type Parent Voices at Holland Bloorview in the search. Come join us to ask questions and share practical information and support.

inthisissue

FEATURES AROUND THE WORLD 06 The balancing act ROLE MODEL 12 Carolyn learns when not to look back CARE NOTES 16 Words that heal 19 What animal is most like you?

20 Does your doctor know these ‘F-words?’

PARENT TALK 22 Grandma adapts to special-needs parenting RESEARCH HITS 25 Science roundup 33 Immigrant moms hit a service wall TRAILBLAZER 26 Humanist Jean Vanier on accepting who we are

DEPARTMENTS RESOURCES 02 Speakers, parent support, books FROM THE EDITOR 04 Think tank puts parents, professionals on the same team FEEDBACK 05 Your letters and comments

On the cover British director Stephen Unwin directs a play about a couple raising a child with profound disabilities. His own son Joey, 16, has seizures, an intellectual disability and no speech. “I love the boy to pieces and I’m grief-stricken and that’s not a contradiction, that’s real.” Photos by Christian Sinibaldi.

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fromtheeditor

Think tank puts parents, professionals on the same team I just participated in something really cool.

As you know, I have a teenager with disabilities and produce this magazine on parenting children with disabilities.

As part of a Holland Bloorview think tank to develop simulations that could be used to teach rehab professionals aspects of family-centred care, I sat at a table with another veteran parent and half-a-dozen professionals.

We were looking for examples of how to share medical information with families in a timely, clear, non-judgmental way that was useful to the parent given their particular situation.

As part of this exercise, we shared personal stories about health-care interactions where communication broke down.

We heard about parents of a premature baby who were given no instructions for freezing breastmilk—which meant the milk had to be thrown out; a 10-year-old who was made to feel incompetent when

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asked to translate medical information for her mother, who didn’t speak English; a family support specialist who realizes the parent she’s speaking with doesn’t yet identify his child with a disability; and a therapist suggesting a child use a walker and wheelchair when the parents expect that the child will walk.

A nurse spoke about how she felt after calling a code for one of her patients, then realizing that no one had notified the client’s mother that the patient had been moved. And a parent felt conflicted about using a hoyer lift when her son was an inpatient. She’d been shown how to use it but wasn’t sure if she remembered all the steps to make it safe.

Now the nurses were busy.

Themes that emerged included the importance of providing timely information to families; ensuring comprehension by having parents “teach it back” to staff (just because a professional presents accurate information doesn’t mean the parent understood it accurately);

listening to understand what has worked best for families in the past; empowering families by making questions shame-free and offering tools (translation or a staff person who acts as an advocate); and listening for emotional readiness to hear information (more is not always better).

Our team got a sense of how challenging communication is on both sides and how important it is for staff to ask parents what information would be useful to them.

We then developed inpatient and outpatient scenarios that could be used to teach family-centred behaviours related to informationsharing, partnership, participation and respect.

Hearing parents and staff talk candidly about the challenges they face in children’s rehab was eye-opening and energizing and quickly built empathy and understanding around the table.

feedback

FROM THE MAGAZINE, E-LETTER & BLOG This issue doesn’t just pertain to adult children with developmental disability but to adult children with severe physical disability as well (Parent despair is a breaking dam: André Marin, May 2). Who helps us parents with a child that is 100 per cent physically dependent on another person for daily living?

I have to work to survive. How can I be there to look after him AND be at my job at the same time? And what about our other children? We can’t look after them when all of our time is spent looking after our disabled child. There are days when I just feel like giving up.

Anonymous, online This post has really made me think and consider inclusion (Can you be ‘included’ and still feel left out?

March 25). Having a non-verbal child with global developmental delay who has just started in a mainstream school with ‘typical’ kids is really opening my eyes.

While I want her to be included, I’m not sure she really is, and I’m not sure whose ‘fault’ it is. Her participation and interaction with her peers is very limited and most of her time is spent with adults. But would this be different if she were better included? And how can that be achieved? You can’t force the situation.

Julie, online

I was recently asked by several people WHY my son’s arm didn’t develop in utero (Why blame mom?

Feb. 26). But why? They wanted to know. I had to defend myself that it was nothing I did and it is just a random thing that happened.

An unexplained statistic. As they looked at me with questioning eyes...

Meg, online As a mom who gave birth to a very early, intrauterine growth restriction baby because I was in danger of dying of severe preeclampsia, it felt very insensitive to be told that “Healthy babies are worth the wait.” No kidding.

Mary, online I come from a different perspective, but have some of the same guilt.

Both of my daughters were adopted. Both of them have genetic disorders. My [oldest] daughter’s was a complete surprise. At nine months we got blindsided with the diagnosis of neurofibromatosis.

I read (and read and read and read), and felt guilty that I didn’t see things earlier, and if I had, could I have prevented... What? It happened at conception, not after birth. Yet I still struggled. With our little daughter, we intentionally set out to adopt a child with Down syndrome. She got really sick with

a virus. As a result of the virus and an unrepaired heart defect, she ended up almost dying, was intubated for nine weeks, and in the hospital for 96 days. We were in the hospital a year ago right now, and I feel like the worst parent alive because it caused her to be further delayed, and she lost the ability to eat by mouth. Guilt is so hard. Even those of us who had no part in the creation of our children still find ways to blame ourselves.

Anonymous, online Thank you for a thoughtful perspective (Let’s rethink ‘normal’ in children’s rehab, Dec. 7). I have always thought that an emphasis on walking for so many people was strange. Getting from point A to point B, yes, obviously. But I would prefer to do that quickly, painlessly and whenever I felt like moving in space. Wouldn’t most rational people (if they really thought about it) prefer a power chair if walking was simply inefficient and unpleasant? Independence is overrated at best and a cruel fiction at worst (for people with severe disabilities). As the writer indicates, often aspiring to independence at all costs simply leads to isolation.

Donna Thomson, Ottawa

Comment on these letters or send your own to lkinross@hollandbloorview.ca

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The g n i c n a l ba act British director Stephen Unwin describes how his new play about parenting a profoundly disabled child hits close to home

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aroundtheworld

Stephen Unwin is directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. The play, at the Liverpool Playhouse and then the Rose Theatre in London, England, strikes close to home because Stephen’s son Joey, 16, has severe epilepsy, an intellectual disability, and no speech.

BLOOM: What is A Day in the Death of Joe Egg about?

Photos by: Christian Sinibaldi

Stephen Unwin: It’s a brilliant black comedy about how a married couple deals with being parents of a child who is profoundly disabled— both physically and intellectually.

Little Josephine is 11 and has cerebral palsy, sits in a wheelchair, has no speech, very limited capacity and suffers from epilepsy. It’s a weird comedy, which was such a hit in the 1960s, that describes the full range of emotions of parents and families of profoundly disabled children.

It ranges from jokes to despair to hard work to fantasy, to the parents having differences of views, to guilt, and the perspectives of other people. The grandmother goes around saying: ‘Wouldn’t she be lovely if she was running about?’ And somehow Peter Nichols makes sense of this extraordinary comedy. It’s not funny in a simplistic way, but in a way that makes you howl.

One of the things I like about the play is that it’s not moralistically or idealistically saying ‘We are all so happy to have these disabled children.’ Nor is it saying ‘It’s only a tragedy.’ The mother gains meaning through being Joe’s mother.

BLOOM: I’ve used black humour to cope with extreme situations. But will an audience with no experience with disability understand the humour in the same way you or I would?

Stephen Unwin: None of the actors have experience parenting disabled kids, so one of the things I had to do is show them how the child is just a child.

People tend to have two responses to serious disability: one is terror and the other is optimistic reverence, and you and I know that neither is helpful. The only answer is reality: ‘Yea, this is what the kid is like, and this is what caring is like.’

It’s nothing to be scared about, but I don’t buy the idea that ‘This is a blessing from God.’ Nor is it a punishment. I think it’s just part of reality and the only answer is acknowledging the reality.

BLOOM: What kind of things did you explain to the actors about parenting disabled children?

Stephen Unwin: The child in the play goes to a day centre and the mom discovers that they haven’t changed her diaper all day.

I was trying to explain what that’s like to the actress who plays the mom. She has young children, she knows what it’s like to change nappies on a one-year-old, but working out whether an 11-year-old has wet themselves? It’s

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aroundtheworld quite hard physical work. But it’s what you do every day of your life and you’re not squeamish about it.

I’d explain what it’s like to give epilepsy medicine to a child who’s shaking, and you go ‘Shit, it’s gone all over the place,’ and you start again.

I try to show people what they take for granted.

For example, when Joe has a seizure in the play they would all jump up to deal with it. No, I said, it’s not like that. This has been happening every day for 11 years, so it’s a different rhythm.

I remind actors of the reality of the situation because I have a parallel experience. But it’s not about my Joey. My Joey runs around and bounces and in many ways is healthy. It’s about Peter Nichols’ child with profound cerebral palsy, who died.

BLOOM: In The Guardian you wrote about your son’s 16th birthday—cake, candles, presents and early to bed—which isn’t what you’d expect with a typical teenager. But do you think we project our own sorrow on to our kids—our own wish that life was different for them—when from their perspective, they’re experiencing something in a rich way?

Stephen Unwin: I think that’s right. But I don’t want to have my grief invalidated by anybody.

I think there’s a sort of pressure on parents of disabled kids to be marvellous, and I howl about it sometimes. I find it really hard. I was brought up with language. I had a really old-fashioned English classical education. I’m over-educated, language is everything for me and I’m dealing with a son who has no speech.

I love the boy to pieces and I’m grief-stricken and that’s not a contradiction, that’s real. Both are true and I feel really passionately that parents have to be allowed to have that range of emotions. This is the ultimate rollercoaster.

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Sometimes it’s absolute bliss and sometimes I feel a great big hole inside, I feel hollow inside.

BLOOM: What have you learned from Joey’s lack of speech?

Stephen Unwin: That there’s something beyond words. But that to me is a very challenging thing to have to understand because I write books and I direct Shakespeare and I’m completely classical about language.

If I had a son who couldn’t play football or fix a car, I’d say: ‘Oh well, I can’t play football, I can’t do any of that manly stuff.’ I can write and I read and read and read and I work on language all the time. So seeing that there is communication beyond language has been the biggest journey for me, and it’s about as far away as what I was programmed to do. It’s a difficult place to get to.

BLOOM: How has your thinking about what’s important in life changed?

Stephen Unwin: It has changed me inside. I’m still in many ways an elitist. I still can’t bear reading bad books or listening to terrible music.

But there’s a circle round that elitist thing that says ‘That’s not enough. That’s not good enough.’

One of the things I’ve learned is that the people who have done best for Joey are not the educated, middle-class, high-achieving people like me and my family. He goes to a brilliant special school and the people who work there are so capable, the level of capability you see there isn’t my background. They’re tough, they’ve huge hearts, they’re practical. They’re not head of the class, they’re not abstract, they’re real. I really admire that and respect it.

BLOOM: Last year I was in Britain and I was listening to the BBC and I thought it must be really hard to have a child with intellectual disability here. Intellect seems to be valued above everything.

Stephen Unwin: That’s me. That’s what I was brought up in. Those are the value systems that I have. And I’ve had to learn that those are not everything. That’s been the real nature of the challenge for me.

When rehearsing the play, there’s little Josephine, who doesn’t speak and is in a wheelchair, and the actress is marvellous, but I say ‘Just remember there’s another human being there, like you are.’

It’s such an obvious thing to say and so important.

It’s the great moral truth. However peculiar the body is, it’s a human being.

BLOOM: I used to think that I deserved what I had in life. Then I had a son with intellectual disability and realized that I’d been gifted with certain abilities at birth and was lucky. And he wasn’t. Sometimes now I hate academia.

Stephen Unwin: I’ve become impatient with narrow minds, but it’s healthy to be impatient with narrow minds.

One of the most extraordinary moments in my life was with my 21-year-old son, Laurie, who is a student at Cambridge University, one of the great

universities in the world. Joey loves his brother and we took him to see Laurie. And Laurie came out of the main gate at King’s College and Joey jumps into his arms. And somehow all that stuff about Cambridge being so grand—and I went to Cambridge and love its real, proper, high-quality intellectual life—do you know what? It doesn’t mean anything at all. That moment showed me something.

There’s a very telling moment in the play when this couple come to visit and they talk about Joe with her parents and the wife is absolutely convinced that she could never have a child like that. That’s marvellous, because disability can happen to anybody.

BLOOM: You wrote about the ‘masterpiece of bureaucratic hurtfulness’ that is the form you had to fill out to claim disability living allowance.

Stephen Unwin: Yes, it’s 48 pages and in order to get the financial support you have to say ‘No, he can’t do that,’ ‘No, he can’t do that’ and ‘No, he’s really bad at that.’ What should happen is that someone should take one look at Joey and say

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aroundtheworld ‘He’s profoundly disabled.’ It’s a non-brainer. I’m not some guy trying to trick a load of money out of the state.

All the time as parents you’re balancing between optimism and grief. And here you had to be negative and it was a nightmare.

What’s more the default on the form is about physical disability. So there’s a question about ‘Can you get into bed unaided?’ Yes, Joey can get into bed unaided, but it doesn’t mention the fact that we have to put him in a nappy first, and he’s 16. And it’s presented in the third person, because it’s person-centred, about the person making his or her own decisions. Which is right in so many ways, except they ask questions as if Joe could answer them. And you want to say: ‘Go and ask Joey, because you’re not going to get an answer.’

BLOOM: Does it ask about Joey’s dreams?

Stephen Unwin: Yes, and that would probably be watching Monsters Inc. BLOOM: My son loves Toy Story. I’m frightened about adult services because I don’t think they meet the needs of people with intellectual disabilities well.

Stephen Unwin: I think that what really has to be understood is that learning disability is a whole other level of issue in health care and somehow that’s got to be taken onboard. I don’t think our health service knows how to deal with people with learning disabilities or with something like Alzheimer’s.

BLOOM: I like what you wrote about how people around children like ours are the ones who need to change.

Stephen Unwin: I think there’s a mistake in some parts of the disability community in criticizing other people for their lack of understanding.

We’ve both acknowledged how much we’ve learned through this, but if it hadn’t happened to us, we wouldn’t have the knowledge. This

is something I’ve worked on in relation to my family, my brothers and sisters and parents.

They’ve been brilliant with Joey, but they find it difficult. I used to feel a bit resentful of them, but now I understand. They find it difficult in the same way I find it difficult, and because they have less experience, they’re still finding it difficult in ways I’ve got over.

BLOOM: But as a parent don’t you long to have others see your child through your eyes?

Stephen Unwin: Yes, one wants that. But what we’re talking about here is a great big pile of entirely understandable human emotion.

Parenting a profoundly disabled child is like parenting any other kid but the emotional temperature is turned up. This makes me more emotional than I would be otherwise, but it’s all very human. It all needs to be normalized into ‘There are these kids who are disabled and they raise particular issues, but guess what? All kids do.’ There are normally developing children who turn into heroin addicts.

BLOOM: What do you hope the audience takes away from your play?

Stephen Unwin: I hope the audience will think ‘God, that is an amazingly complex and rich experience of all these different versions of how you respond to parenting a child with profound disabilities.’ And then there’s a brilliant part at the end where the kid is there alone as the lights are fading. And I think the world has to accept that it has a duty to the frailest; as a rich, rich society, we can’t turn our back.

It’s not good enough to say ‘It’s up to the parents.’

It’s really, really tough and it screws a lot of things up and there needs to be respite and parents need to get time off and society must find a way to provide for these children and include them in the world. These kids exist, they have real, profound problems, and they’re human beings too. They’re part of the world. What’s useful is practical help and love and acceptance.

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Carolyn learns when not to look back

By Megan Jones

When Carolyn Pioro’s spinal cord snapped, she swears she heard it clearly.

It was September 2005, and the then 26-year-old (right) had been working as a circus performer with Toronto troupe Cirque Sublime. The day she was injured, Carolyn was practising a new trapeze number. As she flew through the air, arms outstretched to be caught by her partner, something went wrong. Instead of grasping her partner’s hands as she intended, Carolyn collided with him, and was sent spinning, off-kilter.

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rolemodel

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rolemodel When she landed, she heard it: an audible snap. Carolyn saw a flash of blue light. But she felt no pain. Lying in her final resting position, on her stomach with her head turned to the side, Carolyn remembers knowing even then that her injury was severe, and permanent.

“It’s all over,” she called out. “My life is over.”

In a sense, it was. At least temporarily. In the months that followed, Carolyn’s life was put completely on hold. As a result of her injury, she’d become paralyzed from the neck down, and adjusting to her new body—what it could and couldn’t do—drained her time, energy and resolve. In hospital and in rehab she allowed only immediate family and two close friends to visit. She didn’t want to see anybody else. She felt frightened, frustrated and insecure.

Before she was injured, Carolyn defined herself by the strength of her body. A talented acrobat and athlete by day, and a flirty server at a downtown restaurant by night, she derived fulfillment from what her body could do. Physicality defined her.

And so, at first, she wasn’t ready to face people and places she knew in her old life. Even today, there are people and memories Carolyn prefers to leave in the past. For her, recovery and reintegration into the social world remains what she calls “an ongoing process.” Still, nearly eight years later, at 34, Carolyn has begun to redefine her own worth and purpose, and has slowly rebuilt some old bonds—as well as forming new ones. ____________ Upon completing rehab, Carolyn moved into an assisted living facility. She spent the first few months learning how to meet her own basic needs. She and her family set up drinking stations around her apartment so she could drink independently. She learned to use her computer and phone with the help of a head mouse and voice technology. She mastered the use of her powerchair.

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When she became more settled though, it became clear to Carolyn that she needed to do something more. “I wasn’t going to just sit there and watch movies,” she says. So she enrolled in a publishing course at Ryerson University. Her studies eventually led her to a pair of editorial internships—one at Chatelaine magazine, where she still works as an online freelancer now.

Carolyn enjoyed editing as it allowed her a form of role-reversal. “I spend so much time with people helping me,” she says. “But in editing, I’m helping a writer find their voice and make their work clearer.

“I like the social aspect of work as well. If it’s just me home all day with random attendants, it can be unfulfilling.”

While transitioning into paid work and beginning to build a career felt natural, rebuilding friendships was harder. Many became too painful to hold on to, as some friends had trouble adjusting. When Carolyn ran into problems, like muscle spasms, or her power wheelchair getting stuck, some friends became frustrated, or nervously fawned over her. Despite their best efforts, Carolyn says a few relationships began to feel forced. “Things just didn’t feel natural with some people,” she says. “It was an effort when it wasn’t an effort before. And that was hard for me.”

Other friendships became difficult to maintain as people moved on with their lives and hit different milestones. Even today, Carolyn purposely avoids Facebook and other social networking sites, as she says they serve as a painful reminder of her past. “I’ve lurked on Facebook, and it’s hard,” she says. “You see old friends and old boyfriends moving on and doing exciting stuff. Maybe that’s something I’ll get over, but for now, I’ve had to let some of those people go.”

Carolyn eventually found herself forging friendships in new and somewhat unexpected places. She became closer with her parents, and her older brother. She also bonded with

instead of every weekend—she’s made sure to stay close with some people. “You need people around, not just to help you, but people you can have fun with,” she says.

As she’s worked on rebuilding her work-life and friendships, Carolyn has come to define her own value in a different way. Now, instead of focusing on developing strength in her body, she works on sharpening her mind. “My fulfillment comes from critical thinking and using my voice, instead of being a flirty waitress who could put her hand on her hip and communicate with people physically,” she says. attendants, who were used to her abilities, and could handle problems as they arose, without making a big deal out of them. Even as some attendants moved on to other full-time work, Carolyn kept in touch.

She also maintained relationships with some old friends who were able to adapt to her new needs.

She says simple things, like knowing when to offer a drink, can make social situations much more comfortable.

“When I go out to a concert with my friends, they know. When they take a sip of their cocktail, they offer me a sip of mine at the same time,” she says.

“I don’t like when people feel like ‘Oh, I have to help Carolyn now.’ Just shove it in my face.”

Carolyn says that friends and loved ones of those with recently acquired disabilities should familiarize themselves with what the person needs and doesn’t need; that way relationships feel more natural and less stressful for both parties. “When a person knows what to do and is cool about it, it feels not just easier and safer, but also more enjoyable,” Carolyn says.

While her social life is drastically different from before—Carolyn says she now has three or four close friends in her social circle, instead of 10 to 15, and she goes out once every week or two

Some days are still challenging. While she’s confident about her mind, Carolyn can still feel insecure about her body. “It’s a constant reminder of tragedy,” she says. Carolyn feels that her insecurities have held her back from meeting new people. “I don’t ever see myself in a dating situation, for example,” she says. Some nights, she still dreams as an able-bodied person.

Still, as time goes on, she’s set specific goals, and continues to work towards them. Today, Carolyn lives and works in her own downtown apartment, where she’s visited a few times a day by attendants. In the future, she hopes to find steady office work to support herself more fully.

She plans to stick with editing, and is working to find a permanent office position she could attend four days a week.

“This isn’t ever just going to be over,” she says.

“I’m obviously not going to regenerate any sort of nerve cells.

“But I want and need not to just feel productive, but to move forward.”

Main photo by: William Suarez

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Words that heal 16 ~ BLOOM ~ summer ~ 2013

carenotes “If you could be anyone using that ‘I am,’ who or what would you be?” asked John Fox, a poet and poetry therapist.

John was at the bedside of an 11-yearold boy at Blythedale Children’s Hospital in Valhalla, New York. The boy was lying down, with a breathing tube attached to a surgical opening in his neck that gave him an airway. He couldn’t talk. When John and the hospital’s certified child life specialist first approached the boy, they asked him to raise his hand if he’d like to try some writing.

He did, so John read him a poem about metaphors that began: When I was a baby my heart / was a tiny fish swimming / in a gargantuan sea of things to come.

When I was a toddler my heart / was a trout in a large lake of / thoughts and feeling.

Now my heart is becoming / a salmon ready to go to the sea / of the troubles I will have to face… (from Heart of Water by Orion Misciagna)

John then passed the boy a yellow pad of paper, which he balanced against his leg, and a pen. In silence, the boy wrote: If I was a book I feel happy, caring a story for people to read like an adventure As people turn my pages I feel glad that they enjoy my story as they rush one page to another I feel the wind and the reader as emotion And to the last page the reader take his last turn to my story through the whole adventure and emotion the reader shuts the book and I feel glad that someone enjoys my story, my adventure.

“That just blew me away,” says John, who has worked with inpatients at Blythedale four times, for several days at a time. John, whose childhood included many hospitalizations and a surgery to

amputate one leg below the knee, found writing therapeutic. He later trained to use poetry as a healing intervention with children and adults facing a range of health issues. In 2005 he founded The Institute for Poetic Medicine in Mountain View, Calif., a non-profit that funds projects and offers training and resources.

“One of the main things we want to do is honour a child’s voice and really let them know that their voice matters and is important, particularly in a setting like a hospital, where they could feel disempowered,” John says.

He tailors his work to the needs of individual children and follows their lead, trying to inject a sense of playfulness and fun into the stressful hospital environment. John might ask a group “What are some of your favourite words?” then write them down on a board and work with the kids to make a group poem using these words.

“My tendency is not to go at things head on but through the creative process to allow things to unfold. Once that safety and trust is built, we get to the grittier issues the children are facing.”

A theme that often emerges is “I’m more than what you see,” he says. “The process is like a window opening up onto somebody.

“I remember one profound moment when a teenager with a degenerative illness who was on a gurney used an adapted keyboard to comment on a poem we were reading. Another young man said: ’I didn’t know you were so smart.’ He woke up to her being a real person with ideas he didn’t expect. These two teenagers were learning to listen to and respect each other.”

Even young children write in a revealing way. In a poem seven-year-old Madison writes: Some hospitals tell me I can’t do something After they tell me I can!

Then I feel BLUE.

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carenotes A teenager with a painful condition that limits her movement wrote this poem after doing upperbody and arm dance movements with a dance therapist mirroring her.

students. He recalls reading medical residents a poem written by a doctor, about to retire, to his psychiatrist, after he had recovered from a bout of depression. Part of the poem goes:

When we dance it feels like it’s a dream I feel like I’m floating on a cloud I forget about the pain.

…I credit half our success To pear trees blossoming white Beyond your left shoulder,

“The cloud and dream are transcendent and a clinical person might say they’re good distractions,” John says. “But from a creative point of view they’re powerful images that can hold that experience of being free.”

Lisa Levinson, child-life coordinator at Blythedale, and her colleagues draw on these images to support patients through the rehab process. “We’re often able to support connections between our patients and images in ways that can bolster them mentally through treatment,” Lisa says. “The brain focuses best on one thing at a time, so if we can help a pediatric patient connect with an image, this distractive element can affect their perception of pain, acting as an effective pain-management tool.”

John says a critical part of his work is follow-up over time by certified child-life specialists who work with youth on themes generated in their poetry. “It’s a gift to be able to work with child-life specialists because they know the kids so well and their trust in me helps the kids to have trust.

I need to build a relationship centred on the child and let the child be empowered to guide it.”

John tries to make poetry accessible to all children, including those who can’t speak. “Often they have a way of indicating letters or a picture board or a voice device. But we try not to struggle too much. ‘What poem would you like to hear?’

Maybe there’s a poem we can read and that the young person can enjoy hearing. The idea is that each of us is creative and important and to respect and appreciate that.”

John says many adults would be surprised “by the powerful things that children have to say.”

In addition to working with children, John says poetry is a powerful medium for health-care

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To the wisteria— its pink flowers hanging lush and fragrant over the portico, To the warmth of your hand.

(From Therapy, John Wright)

“One student raised her hand and said ‘What does that last line mean? That seems a bit extreme,’ with a real sense of consternation and confusion in her voice,” John says.

He explained that it referred to the psychiatrist touching the patient’s hand in a gesture of kindness and reassurance. “They’re not taught that those things matter,” he says.

“I try to get medical students to see a human being as a whole person, not just as Alex with cerebral palsy. To see that there can be a lot of surprises within someone, and to help them get out of the rut of seeing that person merely from a medical definition.”

John also works with parents of children with disabilities who are hospitalized. “So much of their concern and energy and focus is going to their child but they also are really in need of self-care and their voice is just as important.

Sometimes I try to have them write about an experience where they take time out and recharge—maybe taking a walk in nature. I have to encourage them, letting them know that writing about what they really like won’t hurt their child.”

Some common themes that emerge in parent writing include “heartbreaking concern for their child, weariness, and a real deep faith in their child or in their love for their child,” John says.

Resources: Poetic Medicine, 2002, John Fox

What animal is most like you?

Here’s a great parent and child exercise by poetry therapist John Fox: Choose an animal as a metaphor for yourself. This animal may have qualities particularly important to you right now. The determination of a donkey.

The happiness of a dolphin. The patience of a spider. The fierceness of a bear. Imagine everything you can about this animal: its habitat and relationship with that habitat, how it moves, what it does in the day or night, how it expresses its voice—a song, a growl, a moo, purring, or maybe it is silent! Use this animal to tell the story of a particular circumstance in your life that needs healing. Go with your gut feeling— what animal expresses you right now? Here are some examples to draw from but create your own too! butterfly eagle bear elephant swan

spider dolphin donkey deer monkey

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carenotes

Does your doctor know these

‘F-words?’

How fun, function, friends, family and fitness influence health

By Diane Kay him into an unusual gait. They say Alfie should spend most of his time in a seating system or wheelchair or use a standing frame (which Alfie hates). On the other hand, private physios say Alfie should have a walker because he can take steps and enjoys it.

In trying to decide whether we should encourage Alfie to walk, Peter suggested I read a paper he and a colleague had written called The F-words in childhood disability: I swear this is how we should think!

About a year ago, I contacted Canadian researcher and developmental pediatrician Dr. Peter Rosenbaum. I wanted to ask his advice on the pros and cons of walking in children with cerebral palsy.

My son Alfie, 7 (above centre), has significant challenges because of cerebral palsy. He wants to walk, despite using what many call an abnormal pattern of movement. Alfie LOVES walking with our support or a walker. It isn’t functional, we’re told, but his slow and excited steps give him a hard-to-beat feeling of independence that he may not experience when he’s older.

Our government-funded physios say walking is bad for Alfie’s hips because his tight muscles pull

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The F-words are function, fun, friends, family, fitness and future. The words are based on the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), which is a way of thinking about health that applies to everyone, not just those with disabilities.

The ICF framework is a diagram that shows how body structure and function, activity, participation, environmental factors and personal factors are interrelated and influence a person’s health. No one factor is more important than another.

Peter and Dr. Jan Willem Gorter took these concepts and translated them into the simpler, family-friendly, F-words, which they argue are also connected. These words convey what’s important to children with disabilities and their families in a way that I could relate to.

For example, if a family is having emotional or financial problems, this can impact on a child’s ability to function and have fun.

For example, under Function in Alfie’s agreement it says: “I want to do stuff. It may not matter if I don’t do it like everyone else.”

If a child isn’t able to get a key piece of technology, it has ripple effects on what a child can do.

Under Family it says: “They know me best and I trust them to do what’s best for me. Listen to them. Talk to them. Hear them. Respect them.”

And sometimes fun is just as important a reason for doing things as function. It was this description in Peter’s paper that gave us confidence to support Alfie’s walking, even if it isn’t the most efficient way for him to get around: “We used to believe that from a very young age children’s everyday activities… had to be done ‘normally,’” write the authors. “We have likely inhibited children’s development by stopping them doing things considered to be outside the normal—literally ‘abnormally’… Performance improves with practice, and hence our primary emphasis in counselling and intervention should be on promoting activity.”

It notes that youth with disabilities participate less in sports, hobbies or even hanging out than their peers. The simple answer is to ask children what they want to do. “It is the doing, rather than the superior level of accomplishment, that is most meaningful to most children,” they write.

We had always erred on the side of “if Alfie enjoys it, then why not?”

But reading these words in black and white in a research paper made us realize that it might be better for Alfie all round if he does do things—in whatever way he can.

The F-words, and how they’re interconnected, make sense to me, but I haven’t seen the ideas applied by professionals.

I decided to create an “F-words agreement” that we would share with professionals. This laminated print-out would be Alfie’s document: he owned it, and he would show it at clinic visits as a starting point for discussion. To me it represents an informal but serious pact between the child and whoever they rely on for support.

And under Future: “Tomorrow is what I make of today. I don’t want opportunities to pass me by.

Help me achieve what I can today.”

We used the agreement for the first time when Alfie needed surgery to reduce his spasticity.

During a pre-op physio assessment, we shared why we thought it was important for Alfie to regain his pre-surgery skills.

“But Alfie won’t be able to keep up with the other children on the playground if he’s walking,” one of the therapists said.

I said we thought it was also up to other children to adapt their games to include Alfie.

We showed them the agreement, but to our surprise, the therapists didn’t respond. There was a loud silence.

More recently I wrote to Alfie’s multidisciplinary team to ask for their specific feedback on the agreement, but I haven’t heard anything.

Being cynical, I wonder if there’s a reluctance to implement these ideas because it would commit service providers and funders to doing more?

The message behind the F-words is that children with disabilities have a right to a future. The future may be tomorrow, but what determines its quality is what our children do today. Now when we’re told something Alfie wants to do “isn’t functional,” I’m confident in my reasons for saying “Sod functional, it’s fun!” And I have the evidence in the ICF to back it up.

Diane Kay lives in North West England. She’s a volunteer for a charity that provides advice on special education and disability discrimination. Diane co-presented a workshop called “The F-words in childhood disability: Why is it so hard to do in the real world?” in Pisa, Italy.

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Grandma adapts to special-needs parenting 22 ~ BLOOM ~ summer ~ 2013

parenttalk

Adjust. Adapt. “Work with what happens.”

These are the words Winsome Kirlew uses to describe how she’s cared for her daughter Kerryan, who had a massive stroke five years ago, and her newborn granddaughter Kerra, who was delivered two weeks early so her mother could be rushed into surgery to treat her stroke.

Kerryan was then hospitalized for over three years while her husband Delance and mother Winsome raised Kerra. At 18 months, Kerra was diagnosed with cerebral palsy, which was caused by a lack of oxygen during her mom’s stroke.

“It’s a complete adjustment for me,” says Winsome, who used to run a hardware business with her husband in Jamaica but stayed in Canada to become her granddaughter’s primary caregiver. “I’m 59 and I’ve never encountered disability in my family or in the community.

People with disabilities are hidden away in Jamaica and you don’t even know they exist.”

While Winsome’s son-in-law Delance worked days and spent his nights in hospital with his wife, who endured nine more surgeries and couldn’t communicate for 15 months, Winsome took on the role of parenting her granddaughter, leaving her husband to run their business in Jamaica. “I didn’t expect to do it, but I committed myself to taking care of the baby,” she says.

Every four months Winsome returned to Jamaica, as a Visa requirement, bringing her granddaughter with her. “I was so worried about my daughter back in Canada and wondering if she’s okay without me. I would call the hospital every day. I can remember one time when I felt as if I was going to snap and

I told God: ‘I can’t bear it any more. If it’s your will, give me the strength to continue.’ And I don’t know where I get the strength and the courage, but it comes. I pray day and night.”

At 18 months Kerra wasn’t walking and was diagnosed with cerebral palsy. “It was very frightening because I was hoping we would have a very normal child with everything else that was going on,” Winsome says. Kerryan was still hospitalized “and not aware of anything.

She couldn’t take anything in at the time.”

Winsome brought Kerra to therapy at Holland Bloorview and she made good progress over the next few years, getting to the point where she could walk while holding on to your hand. She only has one word, which, not surprisingly, is “Grandma.”

Winsome says her granddaughter adores water—whether in the bath or at the beach— and music. “She goes to church every Sunday and they call her the Church baby.

She takes her tambourine and she plays the tambourine and sings and shakes herself.”

Meanwhile, after two-and-a-half years in hospital, Kerryan moved to a rehab hospital where she lived for a year and progressed from using a wheelchair to a walker. She moved home with her mother and family in 2011 and is able to speak again, but has trouble with word finding.

Things seemed to be getting back on track when the family faced another life-threatening illness earlier this year. Kerra, 4, was diagnosed with Guillain-Barré syndrome, a rare disorder

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parenttalk where the body’s immune system attacks the nervous system. She was paralyzed and had to be hospitalized at Holland Bloorview for rehab after two weeks in acute-care.

Winsome says she takes Kerra and her wheelchair everywhere when she returns to Jamaica. This is something new for her Jamaican community and church.

“Sometimes it’s frustrating and you wonder ‘Why me?’” says Winsome, who’s been living in hospital with Kerra. “My parents had 12 of us and of the 12 I am the only one with a child and a grandchild with these problems and illnesses. But then I have to believe it happens for a purpose and maybe God knows that I can take it more than my siblings could.”

“At first everyone would come and circle around her and say ‘She doesn’t walk, she doesn’t talk, how are you managing?’ They saw it as a tragedy. They would touch her as if she wasn’t a normal person. But they’ve learned so much over the years and have come to embrace her.

If I go to church on a Sunday now and Kerra isn’t with me, the first question I’m asked is ‘Where is the baby? What happened to her?’”

Winsome says Kerra is a particularly social child who loves to be out and about. “She loves to be around other kids so I make sure I take her out, even to functions, and I push her around in the wheelchair. If the other children are dancing, you’ll see her dancing in her wheelchair.”

Winsome says her Jamaican family has been a strong source of support.

Kerra is showing signs of improvement.

She can now sit up again and roll.

Winsome says she loves Canada because of how it accepts and supports people with disabilities. “In Jamaica they have a down attitude about it, as if something is wrong and it’s the person’s fault or the parents’ fault and they’re being punished for something they’ve done. Children are locked away and they don’t take these children out. They don’t go to regular schools. In Canada it’s a completely different story. They get every attention here.”

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She keeps herself motivated through prayer and her belief that “Every problem has a solution.

Sometimes the solutions are harsh and they take a long time to come, but you have to bear and endure until the solution is there. And in whatever way it comes, in whatever form it comes, I have to adjust to it, to suit the situation.

With the help of God and able people around me I have dedicated my life to see Kerryan and Kerra rise above their disabilities.”

Photos by: William Suarez

researchhits

Science

roundup ‘Sitting around’ for fun has benefits

Clinicians need to step-up education to combat obesity

A Holland Bloorview study of 26 youth with severe disabilities finds they choose to do mostly passive things for fun, such as playing cards or a game of Wii, watching a movie, or hanging out.

They enjoy these activities and derive a sense of belonging from participating with workers and family. Because our culture tends to judge informal, sedentary activities as less beneficial than formal programs that centre on exercise, it’s important for parents and clinicians to recognize the value “seated” activities offer: challenge, as in the skill required for a game; choice, as in choosing which movie to see; and connection with others.

Children with disabilities are two to three times more likely to be overweight than typical children. A two-year chart review of a spina bifida clinic found that children’s weight wasn’t routinely recorded and, when it was discussed, the focus was on improving bowel and bladder function, rather than offering strategies on how to eat better and exercise more.

The Holland Bloorview researchers suggest weight, and how to manage it to improve overall health, needs to be monitored and discussed openly.

Trips to ER for kids with autism suggest poor outpatient care

Live music, played or sung, benefits premature babies according to a study published in Pediatrics. The study showed that music helps to slow babies’ breathing and heartbeats, improve sucking which helps feeding, and aid sleep. By reducing stress and stabilizing their vital signs, researchers say music can help infants devote more energy to normal development.

Some hospitals find music as effective as, and safer than, sedating infants before tests like heart sonograms and brain monitoring.

Children with autism are nine times more likely to arrive at the emergency department in psychiatric crisis than children without autism, according to a review of almost four million American children’s emergency room visits in 2008. Severe behaviours such as aggression were the reason.

Researchers said the study, published in Pediatric Emergency Care, shows that many children with autism aren’t receiving the outpatient mental-health care they need to prevent and manage these crises.

Live music soothes premature babies’ hearts

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26 ~ BLOOM ~ summer ~ 2013

trailblazer

Photos by: Maxence Gandolphe de Witte

Humanist Jean Vanier on accepting who we are Last summer I visited 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. In a recent phone interview I asked Jean what he’s learned living with people with intellectual disabilities.

BLOOM: Is intellectual disability the most stigmatized of disabilities?

Jean Vanier: I think it can be considered one of the most stigmatized because it touches something very profound. Many people define human beings because of their capacities and success and so on. Aristotle would define someone as a ‘reasonable’ person, a person who

can think, a person who is capable of doing things. He would talk about the intellectual component. And of course people with intellectual disabilities are wounded in their intellectual component, but they have another component which is very much alive, which is their capacity to love.

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trailblazer Somewhere in their deepest personhood they are rejected. This is the story of people with intellectual disability over the whole of history.

They were considered as a punishment from God. We see this even in the Gospel of John, when the disciples of Jesus see a man born blind, one asks: ‘Is it because of the sins of the parents or his sins?’

For someone to be born without seemingly a capacity to be fully human is seen as something horrible, and therefore these people are hidden away. People don’t realize that the secret of being human is the capacity to understand, but more than that, it is the capacity to love.

communion rises up joy and fiesta. We human beings are made to have fun, we’re made to be happy, we’re made to be people of joy and joy flows from communion and unity. Anguish and violence comes from all the forms of disunity.

So human beings are called to become one and to be together. People with disabilities call forth what is most beautiful in me and others, which is the capacity for tenderness, but they also call forth difficulties, to see my own difficulties in relating and call me to work on them.

BLOOM: I often feel that my son’s disabilities are shining a light on all of my weaknesses.

Jean Vanier: That I really understand—showing a light on our weaknesses, showing a light on what it means to be human. The danger in our society is to pretend that we’re strong and powerful.

We can do things, but we are all human beings.

We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak.

To be human is to bring the head and the heart together. Individuals with severe intellectual disability have the extraordinary capacity to enter into relationships, to trust, and to love, and that is maybe the great secret of the human being. It is love that will unify the human family. We need to learn to love each other, not just to have a good head where we’re proving that we’re better than others.

BLOOM: How has your thinking about life changed as a result of living with people with intellectual disabilities?

Jean Vanier: I think what I’ve discovered is about the primacy of relationships. The important thing is to be in communion with people and from

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Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: ‘I need your help.’ That brings us together, because I’m not able to do everything myself. I’m calling out: ‘Can you help me?’ Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted.

BLOOM: We live in a fix-it culture where no one is ever good enough as they are. I think for parents of children with intellectual disability, there’s a real conflict between accepting your child and trying to change your child so that your child will fit into the world better.

Jean Vanier: That is a tension even for us here in L’Arche. The great fear of parents is that they don’t want their child to be looked down upon and rejected, so they want them to be as capable as possible and accepted. All of us have

to go through this tension between showing we are capable and accepting ourselves with our weaknesses.

BLOOM: My son is 19 now, and sometimes I’m tired of the pressure to always be working on things with him. I feel that I miss out on enjoying the moment.

Jean Vanier: What I hear also, and I find it beautiful, is taking the time to enjoy the moment, to be together, to have fun together, so that he discovers that you love him—not because he can change and be better, but just as he is. To rejoice, to be together, each one of us as we are, that is fundamentally important.

BLOOM: It’s often assumed that people with intellectual disability can’t have a good quality of life, particularly in the medical world.

Jean Vanier: I think richness of life comes from richness of relationship. If we view richness of life from the point of view of success—power, a beautiful marriage, two cars and a house, having two children—the reality of human beings is not that. You can have all the riches of the world and still be terribly upset because no one really loves you and accepts you in your fragility.

When I think of the richness of life I think of someone like Antonio, who was here with us. He had an incredibly beautiful face and eyes and smile. He couldn’t walk, he was as fragile as you could imagine, but he had a capacity to trust us and to enter into that relationship to be with him.

He changed people’s hearts.

So if the richness of life is viewed only from society’s view of success and power, then people with intellectual disabilities do not have that.

But in reality, if we accept them as they are and if they accept us as we are, we can enter into this beautiful relationship which is a relationship of celebration.

There is a beautiful story of a young man in the Special Olympics who wanted to win the

100-metre race. He got into the finals and he wanted to be first. The guy running in the next lane tripped and fell and he stopped, picked him up, and they ran hand in hand, and finished last.

He was accepting not to have the prize, but to live in community and solidarity.

BLOOM: The neurodiversity movement has been looking at advantages of different types of brain wiring. Do you think there are positives that come from the way people with intellectual disability think and see the world?

Jean Vanier: I think we have to be careful.

People with disabilities are so different from one another. What is absolutely certain is that their fundamental need is to be loved.

The danger of many human beings is that we’re caught up in the idea of success, of power, of doing more and more and having more. We do have to help people with disabilities to progress— to be better in the world of communication, to be able to do things to become more autonomous.

But what is the most important is this incredible capacity for friendship and love.

People like your son can be caught up in this fear of not being accepted by society, and at the same time being very sensitive to love. I’m sometimes touched by the suffering of people with disabilities who are caught up in the same dilemma or tension as many mothers: wanting to be better, wanting to do things and be acclaimed, but at the same time accepting to live in the moment of tenderness and love and celebration and dancing.

BLOOM: Will people with disabilities ever be accepted in our culture?

Jean Vanier: I think there will always be a tension.

I think something has to be done in schools. I think if one can teach right at the beginning of school, not just the need for success and to go up the ladder, but the need for being together.

I was at a school in Calcutta where they were in a circle and the ones who were better were

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‘ The greatest fear of people who are strong is that one day they will be humiliated and won’t succeed as they wanted to succeed. We need to understand that our treasure is not in our power, but in the deep acceptance of who we are, and who we are is different, but we are all people.’

30 ~ BLOOM ~ summer ~ 2013

trailblazer helping the ones who were doing less well. It’s to help children to discover the power of love. That togetherness is something incredibly beautiful.

The fear is that our schools are being run on the power system and children are not learning to be together in a place of happiness and love. This is the problem of deep individualism.

BLOOM: What advice would you give parents of children with disabilities?

But of course parents are struggling with this.

Parents of assistants at L’Arche are struggling with this. I was speaking at a school of one of our assistants and one of the parents said ‘What are your problems at L’Arche?’

I would encourage them to come to a L’Arche home and to see the fun and happiness that people have. But as I say, I’m wary of giving advice. I like to be with people and I really understand parents who in some ways feel crushed and hurt, because they were hoping so much for a child that would grow up and have children, and the parents would be grandparents.

So, first of all, I would understand the pain of people. There is pain. But then to walk with them and help them and to discover that their child is really very beautiful. It can take some time for parents to come to that place of rejoicing.

I said one of the problems is that you’re very happy if your child comes to stay at L’Arche as an assistant for six months. But if your child wants to stay longer, you’re upset. Because you say ‘staying with people like that is degrading.’

There’s a whole change needed and let’s begin at the school level, to help children so that they no longer despise a child in the classroom who’s weaker, but they can see that it’s a benefit to everybody and it brings forth the beautiful qualities in children.

BLOOM: I was amazed when I visited L’Arche in Trosly-Breuil last summer to speak with an assistant who’d been living there for 36 years.

Jean Vanier: People discover a new way of being. They discover how their qualities of love have grown, and how they’ve grown, and how fundamentally they’re deeply happy here. We have fun together. It is good to be together and there are many people here, in this particular community, who have been here a very long time.

Amazingly, there are a number of young couples aged 28 to 40 who are asking to come to L’Arche as assistants because they have experienced all of the conflict and difficulties for a family in the ordinary life of society. These are young couples who are leaving society, where there’s all this tension to go up the ladder, all this stress, to live here in community and to raise their families here.

Jean Vanier: My idea would not be to give too much advice but to be with them and to listen to them and to hear first their pain, and to gradually help them discover that their child has values that they have not yet seen in him.

BLOOM: Do you find that parents’ perceptions of their children change after they come to live at L’Arche?

Jean Vanier: When a child comes here there’s a joy and a pain. Pain because their child is no longer living with them, but a joy because they know that when they, the parents, die, their children will be well.

There’s always a tension with parents, and the more disabled the child is, the more the parents have grown to love him, to hold on to him, to nurse him, to care for him or her and then the idea of losing control over the child or losing that relationship is sometimes very painful.

But parents are there not to hold on to children, but to help them be well and to grow according to their own gifts.

BLOOM: As a parent I’m fearful when I hear of stories of abuse that take place, not at L’Arche, but at other homes for adults with disabilities.

Jean Vanier: L’Arche began when I took two men out of an institution which I considered violent BLOOM ~ summer ~ 2013 ~ 31

Photo by: L’Arche International

trailblazer

and not good and not really attentive to the needs of people. Let’s face it, the whole history of humanity has been a long history of abuse and violence towards people with disabilities.

People don’t want to have people with disabilities around because it reminds them of their own disabilities and capacity to die. There will always be a struggle and parents have to realize that and we have to work together, not just for people with disabilities, but for people with old age, with Alzheimer’s, with other illnesses.

And there’s a whole reality between those who are rich and those who are poor. I was in Chile some time ago and going from the airport to the city and my driver pointed and said: ‘On the left are all of the slum areas of Santiago. And on the right, all of the rich places, defended by police and military. And nobody crosses the road.’

This is a bigger challenge than just people with disabilities. We have to discover that to be a human society we have to be intensely present to those who are weak and in need. A society can only be human when the strong and weak come together to celebrate life.

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BLOOM: It’s funny that we’re all mortal and yet so often we go through life pretending we’re invulnerable.

Jean Vanier: We praise the strong, we praise those who are winners, and we tend to despise the weak, or we feel despised if we are weak. The greatest pain for human beings is humiliation, to be despised and put down.

The greatest fear of people who are strong is that one day they will be humiliated and won’t succeed as they wanted to succeed. We need to understand that our treasure is not in our power, but in the deep acceptance of who we are, and who we are is different but we are all people. If we try to be who we are not, that tension will someday explode.

Everybody is frightened of the word ‘death.’

We’re taking that away and instead accepting that we are born to live and born to die, we are born to grow strong and born to grow weak. We are a harmony of strengths and weaknesses but it’s because of our weakness that we need help and we need relationships. The magic words are always: ‘I need your help. I need to be with people.’

Immigrant moms hit a service wall Immigrant mothers face a brick wall trying to get services for their children with disabilities in the Greater Toronto Area, says one mom of a child with autism who’s also a social worker and University of Toronto professor.

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“I’m supposed to know how to get through, and I don’t,” said Charmaine Williams at the Mothers Speak Up! Café Scientifique at Holland Bloorview in May.

Yana Skybin, a settlement counsellor with YMCA Newcomer Services in Simcoe County and mom of three children with autism, said “just speaking with an accent” can lead to unequal treatment.

The event brought together mothers and service providers to discuss the findings of a York University research study into barriers facing immigrant mothers of children with disabilities.

“[Service providers] ‘downtalk’ to women, even those who speak English,” Yana said. “If you don’t know how people communicate [in this culture], they assume you don’t have any education. When [mothers] don’t understand the system or speak with an accent, they treat them as if they have a disability. It is not an equal conversation.”

Despite her professional qualifications and the fact that she speaks English, Charmaine described the health, school and social supports for families like hers as “a bureaucratic obstacle course.”

The York University research on 30 immigrant mothers in the GTA and 27 service providers found a long list of barriers: fragmented services across the city that are hard to access and get to on public transit; long waits; language barriers; employers who don’t accommodate parents who need flexibility to meet the needs of their child; poverty; and discrimination by service providers, especially in schools.

“The more visible a minority you are, whether it’s your language or you’re black, the lower the expectations of the school,” said Sharon Smith, a mom with two children with special needs who moved to Toronto from Trinidad.

Sharon said it was harder to get appropriate services for her son with significant medical and developmental disabilities than for her son who was highly verbal and only had social issues.

“It’s not just my race,” Sharon said. “It’s also discrimination based on the degree of disability.

My older son is quite verbal with social issues, and the school has been very supportive. But it’s very difficult and a constant struggle to get school supports for my younger son with seizures” and more significant language problems, she said.

“It seems that they make a judgment on what value people like my disabled child will be to society in the future” she said, and allocate resources accordingly.

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Yana noted that when she moved to Canada from the Ukraine she didn’t understand the “politics and interpersonal skills” needed to effectively advocate here. “At first I was too direct.”

‘ The more visible a minority you are, whether it’s your language or you’re black, the lower the expectations of the school.’

Sharon Smith, mom of two children with special needs Gail Jones, director of community support at Kerry’s Place Autism Services, said governmentfunded services “are not set up for people who don’t speak English or French.”

She also noted that cultural differences in how disability is understood can make it hard for families to get what they need. She told the story of a family that didn’t follow through on behaviour strategies for their child.

After a number of staff tried to work with the family, they decided to change course. Instead of focusing on behavioural intervention, they helped the family develop a network of support with their faith community.

“As the parents saw people from their faith community accept this child and the disability,

researchhits only then could they accept it,” Gail said. “Other professionals might have wrongly labelled the family as non-compliant, instead of being flexible in their understanding and support approach.”

posed a barrier because of strict attendance policies. A participant explained that when moms had to miss class to attend to a child’s illness or serious meltdown “they were kicked out.”

A mother noted that in the Asian community referring to your child as having special needs “is losing face. So parents will make excuses: My child is shy. She’s fine, she’s just afraid to talk to strangers.”

Sheila said moms were heroic in the perseverance and creativity they brought to their advocacy despite numerous barriers.

An advocacy group representing 70 Chinese families with children with disabilities said they were unable to get government funding because their parent support group is conducted in Mandarin.

Many mothers who suspected their child had a developmental issue were not believed by health and other service providers. Sometimes their parenting skills were faulted.

“It took two years to get a diagnosis,” Yana said.

In the meantime, she was instructed to go to parenting courses, where she found that “90 per cent of the parents had children with special needs.”

Many of the mothers became single parents when their husbands left.

In recounting her despair at trying to cope with her children’s constant meltdowns and disbelief from service providers—including being told one child was simply “spoiled”—Yana recalled “hitting the bathtub with my hands until they hurt.”

Many were unable to fill out forms or advocate effectively at school meetings because they didn’t speak English well enough.

Charmaine noted that “the world wants us to keep caregiving private because they don’t want to be accountable for it. Caregiving needs to be recognized as paid work. We need policy reform to support women engaged in caregiving.”

In pointing to services that make their lives easier, mothers said their best experiences happened when information and services were coordinated and available under the same roof.

The research is led by York University researcher Nazilla Khanlou. The Mothers Speak Up! event was sponsored by the Canadian Institutes of Health Research Institute of Gender and Health.

A full report with references will be distributed this summer. To receive a copy, e-mail owhchair@ yorku.ca with “Mothers Project Report” as the subject.

Social isolation added to the stress. “People don’t know how to talk with me about being a mom of a child with a disability,” Charmaine said.

“Other parents avoid [us] and [my child] becomes invisible.”

Sheila Jennings, the Mothers Speak Up! project coordinator and a lawyer doing graduate research on the rights of moms and children with disabilities to support, noted that attendance at government-funded ESL programs for adults

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