BLOOM Magazine

PA R E N T I N G P O S S I B I L I T I E S

WINTER 2012

PARENT TALK When therapy loses its meaning

TRAILBLAZER ‘It’s not what you see, but how you see it’

PARENT HEALTH The balancing act: A dad talks about special-needs parenting and marriage

SIBLING ISSUES Should kids be asked to care for a brother or sister with disabilities?

RESEARCH HITS Study finds teachers, students shut out disabled kids

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WINTER 2012

BLOOM speakers The new BLOOM speaker series brings you leading thinkers on childhood disability and a night of networking with parents.

Redefine success: Decide for yourself what really matters When: Feb. 15, 7-9 p.m.

Where: Family Resource Centre, Holland Bloorview Cost: Free Join Jennifer Johannesen, author of No Ordinary Boy.

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.

Letting go: Find ‘home’ for your adult child When: April 10, 7-9 p.m.

Where: Family Resource Centre, Holland Bloorview Cost: Free Join Donna Thomson, author of The Four Walls of My Freedom.

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 CREATIVE DIRECTOR & 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 in BLOOM do 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

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Please RSVP to Nancy at 416-425-6220, ext. 6303 or e-mail nydyke@hollandbloorview.ca.

Warmline and online resources Do you need help navigating the health-care system? Are you looking for answers to questions about childhood disability? Call the Holland Bloorview Warmline at 416-4243888 or 1-877-463-0365. Or visit our online Family Resource Centre: www.hollandbloorview.ca/resourcecentre.

Parent-to-parent support Are you an outpatient parent to a child with special needs?

Join us on Feb. 23 in the Family Resource Centre from 10:30 to 11:30 a.m. for our first Parent Talk! Sessions held the last Thursday of each month. Call 416-425-6220, ext. 3713.

Bookshelf Where We Going, Daddy?: Life with Two Sons Unlike Any Other, Jean-Louis Fournier, 2010. As the father of two sons with physical and intellectual disabilities, French humorist Jean-Louis Fournier uses a series of short vignettes to frankly discuss the difficulty of coming to grips with his children’s limitations.

inthisissue

On the cover Shukri Farah, with son Abdulahi, 6, talks about barriers to accessing autism services in the Canadian Somali community.

Listen to Shukri in this BLOOM video clip on Youtube: http://youtu.be/7bgitFVO8Q8.

Features

GROWING UP

PARENT TALK

28 Explaining Mitchell: A mom describes Fragile X in a way kids understand

06 ‘No matter how much I did, I felt the abyss of the bottomless pit’

RESEARCH HITS

TRAILBLAZER

31 Science roundup

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32 Britain’s disabled children lead a life of exclusion, study says

‘ It’s not what you see, but how you see it’

ROLE MODELS 16 ‘I’m still doing what I love’ PARENT HEALTH

33 A study finds disabled kids shut out by teachers and students

18 One dad’s formula for keeping a marriage strong

Departments

PARTNERSHIP

RESOURCES

22 Costs, quality-of-life assumptions put complex kids’ care at risk, doctor says

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SIBLING ISSUES

34

24 Pillow: A sibling’s story

FEEDBACK

26 Should kids be asked to care for a disabled brother or sister?

YOUR KIDS IN BLOOM

Online and book shelf

FROM THE EDITOR 04 A wake-up call

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A gift for BLOOM

Your letters

Photo gallery

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fromtheeditor

A wake-up call I caught myself several times after I interviewed Dr. BJ Miller (It’s not what you see, but how you see it, p. 10). I caught myself feeling one way about a situation but saying another, in order to fit in. I caught myself going along with someone else’s values about what’s important in life, even though I don’t agree with them, because I didn’t want to ruffle feathers. I caught myself questioning what I believed instead of listening carefully to the wise voice in my mind.

What I got from my interview with BJ—a triple amputee who became a palliative-care doctor—was a wake-up call about the time we waste trying to be someone we’re not, time we could devote to building up who we are.

BJ talked about how we constantly measure ourselves against other people. “When I talk to school kids they’ll say ‘Don’t you miss having two hands?’ and I’ll invariably say ‘Yea, I do, but don’t you miss having three hands?’

Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three.’”

That made me think about how often we sabotage the joy we feel about our children,

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because we’re so quick to hold them up against the ‘normal’ yardstick. My 17-year-old son will do a book of sums adding 2—miraculous since he’s never ‘gotten’ math and couldn’t write a few months ago—but the flood of gratitude I feel is quickly replaced with this parching thought: Most 17-year-olds are doing calculus.

But most 17-year-olds are not my 17-yearold with multiple disabilities. And wishing Ben was your average teenager is as crazy and counterproductive as bemoaning the fact that I don’t have three hands. “…Over time, spend your energy on finding things to celebrate in your child’s differences,” BJ said. “Turn your attention toward the differences, instead of away from them, and who knows what will come—either lessons, or some weird new talent. Divorce yourself from the typical measures of success in life.”

Wouldn’t life be rich if we followed BJ’s advice?

feedback FROM THE MAGAZINE, E-LETTER & BLOG I am appalled, but sadly not surprised (Cognitive disability disqualifies child from transplant, Jan. 14). Does their ethics board contain family reps who have children with complex medical needs? And how value-neutral are these decisions and policies? I recall talking to a local law professor here who speaks about bioethics in the media. I asked him if he ever spoke to families. He looked at me like I was on another planet. I abhor the term ‘quality of life.’ Quality of life to a specialist physician who believes in smarts and academics is very different than quality of life for those of us with children with disabilities. There are such terrible assumptions in these conversations. I don’t forget that 30 years ago, hospitals in Alberta would not fix the hearts of children with Down syndrome.

Sue Robins, Edmonton, online I know many people, including myself, who have suffered from medical error in their families (After medical error: Care for the caregiver, Jan. 3). I think it’s important for patients/families to understand the devastation some providers feel and also to understand how complex medicine is and how easily unintended errors can occur. When most people make a mistake they say, “Oops, sorry” and no big deal, but in healthcare, that “oops” might be someone’s life. I think that full disclosure (including all records) is critical.

Also, an apology by admin staff is not a substitute for an apology by front-line providers. A faceto-face meeting with both sides adequately prepared, provides the

best opportunity for apology and forgiveness, which are necessary for both sides to heal.

Anonymous, online As professional caregivers we too live with both distress and enrichment, as Frank Carnevale outlined in his Pediatrics article (‘Burden’ of complex kids not whole picture, ethicist says, Dec. 5). It is both a challenge and a privilege to work with seriously ill children & their families.

Stephen Liben MD, Pediatric Palliative Care, Montreal Children’s Hospital, online The (often unspoken) opinion that intellectual ability is the primary yardstick for human worth is all too common (A fate worse than death, Dec. 2). Eva Kittay, in her book “Cognitive Disability and Its Challenge to Moral Philosophy” forces Princeton bioethicists Geoff MacMahon and Peter Singer to cough up their real ideas about those with severe cognitive disabilities. The comparison they draw is with a pig, or in lesser cases of disability, an ape. There is a real danger here of policy being made and funding mechanisms being created by those who secretly harbour these ideas. I am very encouraged to see physicians coming out of the closet and the beginnings of a public discussion on how to fund a good life for those with cognitive disabilities and on what basis we should make those decisions.

This is a beautiful post (‘The third parent,’ Nov. 18). It provides me with a bit of insight as I prepare for my middle daughter’s growth, as she’s wedged in between her older and younger sisters, both with cerebral palsy. I learned early on that we couldn’t ‘mortgage’ her future with caregiving after my wife and I are no longer able, but I never thought about how our asking her to help could easily turn into being a ‘third parent.’

Tim Gort, Grand Rapids, Michigan online As a rehab professional, I think that parents have to come to this realization on their own (Outcomes: How to let go? Oct. 3).

I try to give them permission to go there, to know that more therapy is not necessarily what leads their child and their family to a happier, healthier life, but sometimes they are not ready to hear it – and I haven’t found I’m able to do much about that. It’s hard to see, as a professional who cares very much about patient and family outcomes in quality of life above all else. Please keep saying this – I agree with you that parents need to both speak up and hear this from professionals and fellow parents.

Liz the PT, online

Donna Thomson, London, England, online

Comment on these letters or send your own to lkinross@hollandbloorview.ca BLOOM ~ winter ~ 2012 ~ 5

‘No matter how much I did, I felt the abyss of the bottomless pit’

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parenttalk

By Jennifer Johannesen

My son Owen passed away in October 2010 at the age of 12. He was born with multiple severe disabilities, some of which were anticipated in utero, and all of which remained undiagnosed, even in his death.

Recently I’ve taken stock and written a book— No Ordinary Boy—about life with Owen.

Writing offered no relief from my grief, but it did allow me to see the full arc of the narrative of his and my life for that 12-year period—a story, with a beginning, middle and end.

I can now recall events and moments and place them in time, in context, knowing where our lives were ultimately headed. What was once ‘just’ hard work, worry and gut-wrenching decision-making now has a poignancy—it exists as a precursor to whatever happened next.

• appointment summaries and paperwork that primarily serve to fill your child’s file and which no one will ever read; • elaborate applications for funding— forms that require parents to exaggerate or lie to game the system; • extreme measurement of goals, inputs and outputs, outlined in metrics that only an institution cares about and which in fact gets in the way of real parent engagement with the child; • intake after intake after intake, to accommodate the constant turn-over of staff; • and spending as much time ‘cramming’ for follow-up appointments as doing the prescribed therapies (“We were supposed to be doing these exercises every day and now we have an appointment! In order to catch up, so the therapist doesn’t think she’s wasting her time, we have to do it three times a day for the next week!”).

This reflection has led me to new perspectives, reinterpreting history with a dispassionate eye and sometimes heavy heart. A prevalent theme has emerged—one I call ‘fake work.’

I’m sure you can think of more. Fake work could be any activity where parents (and the child) are required to spin their wheels or run in place or paddle like crazy in order to give the system what it needs to keep chugging.

I borrow the term fake work from a business book of the same title, which outlines how work that gives off a vibe of productivity—but does little to achieve the company’s goals—has permeated corporate culture. Fake work has other names too, like busywork or make-work. I like ‘fake’ because it has more grit. And it suggests a kind of collusion between all parties involved.

“But isn’t some of it necessary” you may ask?

Yes, for sure. But only if the system is serving you well and is a place where you want, and choose, to be. Many times, I didn’t think that what was on offer was a choice. Instead, I just thought, “This is what one does when raising a child with complex disabilities.” It was as necessary and logical as putting one foot in front of another.

Fake work, as I think it applies to raising a child with complex disabilities, could include:

Granted, in order to see progress we have to measure it, document it, chart it, apply

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what we’ve learned. This makes logical sense (although I question just how much is actually needed). So rather than just complaining about the work itself, perhaps a more useful exercise is for us, parents and clinicians alike, to back up a step, and look at why we do what we do (not just at what we do).

What if we wondered why progress in our children is so important? Part of what creates

• doing things that make my child appear as though he’s doing things similar to ‘normal’ kids, when we all know that he’s not; • and keeping myself busy so that I feel like a good and worthy parent.

Parents of children with disabilities put plenty of pressure on themselves to do everything possible to help their kids and rarely does anyone question their motivations. After all, there’s nothing worse than imagining a disabled child without access to therapy or ways to improve their lot. And there’s something noble and courageous about a parent who wants their child to be all they can be, rather than just be all they are. These are deeply ingrained values in our Canadian society.

And all of this works out just fine for institutions, who by their very nature demand inputs and outputs, measurable goals and documentation, status reports and metrics.

fake work is our willingness not only to go along with rehab advice without challenging it, but our desire to see our children continually improve, to achieve milestones, to be closer to ‘normal.’ In many cases, our desperate desire.

It may be reasonable to assume that all parents want what’s best for their child. But ‘best’ is a slippery concept, like ‘quality of life.’ It’s hard to define, yet we assume that we all agree on what it means. Because often our goals for our children are so undefined, we might expand fake work to include: • working on something therapeutic that everyone, deep down, knows is futile; • doing therapies prescribed by clinicians but not really understanding why. Or simply assuming the clinician knows best.

And for me, the ones that hit closest to home:

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So many good intentions, and yet many parents, like me, find themselves swimming in paperwork, expectations, cheerful insistence and constant scheduling tensions—and feeling immensely exhausted and alone.

I have often wondered, “Why is it culturally acceptable that I be snowed under in this way?

What other parents are expected to work this hard?” Granted, I was thrown a curveball— assigned the huge responsibility of caring for a child who was difficult to care for. Indeed, there was much to learn and much to do. But no matter how much I did, I felt the abyss of the bottomless pit. The applause and the praise and the compliments about how I had it all together—from professionals, family and friends—were almost depressing, because I felt like there was no way I could stop.

“You’re doing great!” they’d say, always with a kernel of hope that maybe the hard work will lead somewhere. The enthusiasm drew me in—who

parenttalk doesn’t want their child to walk, eat by mouth, select a shirt, or show they know something?

The idea was always to try to maximize Owen’s potential. But I often thought it was all just to get closer to the Holy Grail: a ‘normal’ child.

Or at least, a socially acceptable child.

And regardless of anyone’s hopes and expectations, realistic or not, the activity of therapy itself was never in question. Working hard was never in question. Working much, much harder than other parents of typical children wasn’t in question. And comparing the child with disabilities to the child without, as a means of goal-setting, wasn’t in question.

Do we dare dissect this a little? Is there any way to interpret this that doesn’t require us to assume our children are indeed ‘less than,’ and that it is up to the parents and the system to somehow bring them up to par? Or to die trying?

who’s watching, or letting ‘appropriateness’ ruin the fun. They learned to interpret his cues and let their plans unfold naturally.

Days were filled with nature walks, markets, coffee with friends, even tattoo parlours (where one caregiver sometimes worked). Owen swam with Mark, baked with Jamie, enjoyed community outings with Marjorie, and became a regular at the local Starbucks with Sallyanne.

I asked myself almost every night, “If this were his last day, would it have been good enough?” The answer was almost always yes. And I had no idea that he would die unexpectedly, less than two years later.

Now I live with few regrets. But sometimes I wonder how that would be different if Owen had died in the midst of all that trying.

After many years of going along, I divested. Some might say I gave up. It was a life-threatening health crisis that landed Owen in dire straits in intensive care for many weeks that made me change how I was doing things. I whispered a promise to his unconscious self that if he made it out alive, I would make things better.

And by better I meant meaningful—to him and to those around him. I promised that I would provide him with experiences and interactions and environments that would help him connect with others and the world around him—and we would scrap the rest.

When he came home from the hospital, I withdrew him from school, cancelled his therapies, and stopped the lessons. Life became fun, meaningful, interesting. Instead of focusing on what Owen could learn, we planned activities around what he could experience. Caregivers were instructed to enjoy themselves, do things they love and share their enthusiasm. They were to involve Owen as best they could without thinking about

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trailblazer

‘It’s not what you see, but how you see it’

Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train’s electric voltage arced to his metal wristwatch, resulting in the loss of part of his legs and left arm. As a triple amputee he went on to graduate and become a palliative-care doctor. He’s now executive director of the Zen Hospice Project in San Francisco. “I learned so much, particularly about perspective,” he says. “It’s not what you see, but how you see it.”

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trailblazer BLOOM: It sounds like you were someone who had everything—at least on the outside—before your accident. How did becoming an amputee change you?

BJ Miller: I was well aware that I was very fortunate in many ways when I was younger and while that was good, it was also tough. Whenever I worked hard or was proud of something, it was discounted. I couldn’t take any credit for any of my achievements—or my pain. It was a bit of a funny relief when I became an amputee because I finally had an external source of suffering.

Finally people stopped treating me like the world had just been handed to me. It gave me access to humanity in a different way and that helped me. It didn’t feel this way every minute, but I worked towards it feeling like a source of good fortune. Of course it was also a source of a great deal of pain and anxiety too. I’ve had the full gamut of emotions but on balance, over the years, more good than bad has come from it.

Photos: Brant Ward/The San Francisco Chronicle

BLOOM: What was the greatest challenge for you?

BJ Miller: In a nutshell, how to see things differently. By pulling me out of my anythingapproaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up.

I was given a way to let myself off that hook and be my own frame of reference. That was extremely liberating for me and it gave me a way into self-actualization that was wonderful.

It’s still a great challenge to keep it up—to still be my own boss, to be my own gauge.

As much as that’s the greatest gift, it remains the greatest challenge. A critical subtext for disability and for my palliative work comes to this issue of following one’s own gut and reconciling what the external world wants and thinks and needs from you with being true to yourself. There isn’t a pat answer to that.

When I talk to school kids they’ll say “Don’t you miss having two hands?” and I’ll invariably say “Yea, I do, but don’t you miss having three hands?” Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. “I don’t sit around missing them anymore than you sit around missing three,” I’ll say. This frame-of-reference issue is a powerful thing.

BLOOM: How hard was it to relearn how to do things as an amputee?

BJ Miller: It took five years of hard work before I felt truly in my body again and coordinated in a new way. I think the hardest thing remains the arm. Having two hands is way easier than one, and the hands are so important. Sure, I miss my feet, but they’re just like a platform. They’re easy to duplicate.

I can get around on my prosthetic legs.

BLOOM: What did you learn about having a visible difference in our culture?

BJ Miller: I’ve learned a lot because I was suddenly snapped into being part of a minority, of being ‘the other.’ All of a sudden I embodied something that most people fear.

I was very aware of this sort of repulsion that people felt. It was hard to see the terror on kids’ faces, or parents pulling their kids away from me. Or if I surprised someone, and I was wearing shorts, and they were horrified.

Sometimes it took the guise of pity, which I knew was the enemy. Sometimes the pity felt nice because old women would come up and give me $20—even when I was in medical school! It definitely was hard and I had to really concentrate on sticking my chin out when I walked out of my bedroom to face the day.

The fascinating part was that about two years after the accident I noticed people’s reactions got a little better. And after five years I noticed a big difference. I must have carried myself differently. At first, I’d drive like a mad man and get pulled over by the cops and they’d

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trailblazer take one look at me and let me go. Or if I was flying, I’d be bumped up to first class every time and they’d sneak bottles of wine into my bag. But then that just stopped. Did I reach a new level that I didn’t trip up these responses in others, or had society evolved?

BLOOM: What assumptions do people make about you?

BJ Miller: Back in 1990 I was treated as a Frankenstein figure or a Christ figure and it was ridiculous at either extreme. Sometimes I got congratulated for going to the bathroom. Then somewhere along the way amputees seemed to bust out and a handful went out and did extraordinary things—competing in Iron Man triathlons—and the expectations changed: if I didn’t climb Mount Everest, I had failed.

Whether people expect too much out of me or too little I still have to learn the skill of protecting myself against false expectations. I worry that my life has been summarized in the media as one of extraordinary achievement. I won’t argue that some really good stuff has come from it and I’m glad for the things I’d done, but I haven’t done those things out of ambition or the need to be Superman. I’ve done them just to be true to myself and the possibilities in front of me.

BLOOM: How did you cope in the early days?

BJ Miller: I was full of pain and fear. But I can’t tell you how important it was having grown up with a disabled mother. For much of my mother’s life she used an electric wheelchair and being in the world with her, I vicariously learned a ton of the things we’re talking about. As a child I was sensitive and a little worried: ‘Gosh, I’m lucky in all these ways and could I even handle it if I had a disability?’

So I was coming from a different place when I became an amputee than most people. I loved my mother so much and was aware of

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the way the world treated her—and yet I didn’t want to collapse into hating life. These issues had been rumbling around in my head for a while. I didn’t wake up on day one and see my situation as a great challenge. But pretty soon I was aware that it was that—a great challenge. I knew that and I had to live it.

BLOOM: Did friends stick with you?

BJ Miller: There was only one friend who just couldn’t handle it. He couldn’t really even look at me because it was too painful for him. He wasn’t mean, he just sort of disappeared. But for the most part people stuck by me and that’s because I had really great friends and a lot of my friends were close with my parents and had learned from my mother’s experiences.

BLOOM: Doctors typically rate quality of life in people with disabilities very low. How would you rate your happiness with life now compared to before your accident?

BJ Miller: I would rate my quality of life as better.

For all the reasons we’ve discussed—for all of the internal resilience it’s fostered in me. And also at some point I would have to say that people with disabilities have to learn to get into it and embrace it. I love my prosthetic leg. I love playing with it and it’s that playfulness that is so critical —you not only accommodate your disability but you really celebrate it and get into it. At that point you’re not operating from a sense of deficit anymore. However you get to that point is key.

BLOOM: Do you have a personal philosophy that helps you see things with perspective?

BJ Miller: I’ve only read the Serenity Prayer a couple of times but I’d have to say that it registers with me. Teasing out what you can control from what you can’t control—I can’t think of a better skill to acquire as a human being than that. Because whether or not you qualify as disabled, life is full of pain and difficulty.

Even if you have all the perfect circumstances,

at some point Mother Nature will insist upon certain things from you, like your own death.

You can’t change the things you’re looking at in so many ways, but if you’re going to use your energy, put it into how you see.

BLOOM: Why did you become a palliative-care specialist?

BJ Miller: Because all of the things I’ve learned to get through my day seem to have broader relevance for people dealing with various themes of suffering. Suffering is a unifying human bond and it comes in many stripes and colours. And even if you have a perfect life you still have to say

goodbye to it at some point. I love finding and working from the common denominator—and suffering and mortality are the most thorough.

After med school I thought I would go into rehab medicine but when I did a rotation in that I was turned off. It seemed to be a very mechanical field, while a lot of what we’re talking about has to do with the transformational powers of coping with disability—that there’s this raw material for transformation and growth and interest. The goal in rehab seemed to be to get back to where you were before the injury and that to me was fundamentally flawed. Generally it’s not possible, but more importantly, why

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‘ Spend your energy on finding things to celebrate in your child’s differences. Turn your attention toward the differences, instead of away from them, and who knows what will come – either lessons, or some weird new talent.’ undermine and cut yourself off from all the beautiful stuff that comes your way when you embrace differences? I’m sure there’s a balance to be struck with therapy, but overall, celebrating differences—especially the ones you can’t change—is a better way through, if you ask me.

BLOOM: Some people might imagine that working with people who are dying is negative. Is it?

BJ Miller: You have to watch yourself. Sometimes it’s hard to strike a balance. But for the most part I see much more beauty in it. And it’s not beauty because of the absence of pain. It’s beauty because of how we respond to pain. If I could push a button, and all the pain would go away, I’d push that button. But since it doesn’t exist, I want to see how people foster a way of thinking that’s creative in response to the things we can’t control. To me that’s much more beautiful than horrifying.

BLOOM: What advice would you give parents of children who won’t meet conventional markers of success?

BJ Miller: I don’t presume to know exactly what that feels like. I wouldn’t try to convince parents not to worry, or not to wish that their child had an easier go of things, but I would say over time spend your energy on finding things to celebrate in your child’s differences.

Turn your attention toward the differences, instead of away from them, and who knows what will come— either lessons, or some weird new talent. Divorce yourself from the typical measures of success in life. It’s a

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harder road, but a way more fulfilling one.

I have a window into the inverse of this in my work. I see people all the time who do have a ridiculous wealth of conventional success and there’s a lot of misery in there because they’ve never embraced their own internal metric, they’ve never done their own homework. Part of getting there involves letting go of the idea that ‘if I just had this or that’ or ‘if I just looked like this or that’ things would be perfect. In fact, it’s my experience that it’s the opposite.

BLOOM: What have you learned in palliative care that might have relevance to people living with disability?

BJ Miller: Suffering is normal—though you may keep it at bay—and time is precious. And to squander time trying to be someone you’re not isn’t generally the best use of time. I spoke at a rehab hospital and I challenged them to take the field beyond the bullshit around ‘normalcy’ and to embrace the emotional, conceptual, philosophical and transformative issues that are smack in front of their faces.

The mechanical side of rehab needs to be complemented with developing the individual’s mind to embrace life rather than feel the need to change it into something it’s not. When I look back on my rehab process I’m glad I did it and it was useful for me. But I didn’t pretend that what they were offering was a comprehensive, therapeutic response. I took it for what it was— mechanical—and I had to get the philosophical and emotional pieces elsewhere.

your kids ‘in bloom’ If you’d like to see your child here, please email a high-resolution photo to lkinross@hollandbloorview.ca. We will try to feature as many as possible.

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‘ I’m still doing what I love’ Heba Fakhir, 18, has muscular dystrophy. At age 8, she and her family moved to Canada from Libya. Since then Heba has adapted to many physical changes. First she lost the ability to walk. Then at age 14, after repeated pneumonias, she required a tracheotomy and ventilator to breathe. Later, as a result of an operation to straighten her back, she lost the ability to look down, which made her passion for drawing a challenge. Heba’s dream is to go to college to study fashion design.

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rolemodels

BLOOM: Describe yourself.

Heba Fakhir: I’m a friendly person and even though I have to go through a lot of challenges I still have my own personality and my own style. Even though I need help, I still make decisions on my own about the way I like things done—whether medically, physically or educationally. I love drawing because I can express all my thoughts and feelings through it. It’s an art and whatever you feel or think goes into it—whether you’re designing clothes or painting or sculpting. I love clothes shopping and I love art, so I decided that they go together and I should pursue designing clothes. I love music and listen to it all the time.

BLOOM: How did you get through some of the physical losses you experienced?

Heba Fakhir: At first I was really frustrated and I couldn’t handle it. I felt like I was going to lose everything I’d worked on and everything I’d dreamed about. First it was my legs. My muscles got weaker and weaker and I had to stop walking and get a wheelchair. Then I was getting sick a lot with pneumonia and colds and I couldn’t get rid of them. I lost being able to breathe on my own, and I needed a tracheotomy and a ventilator. A couple of years ago I had back surgery for scoliosis and after the surgery I lost the ability to look down. I can see things in front of me but I can’t physically move my head down or lean forward, so I can’t write or draw. They told me my back would be straight and I would be comfortable, but I didn’t know I would lose the ability to draw or write because I couldn’t look down. Ever since I was little, drawing was my favourite thing and I lost it. It was tough.

BLOOM: But you’ve brought designs of your clothing in? How did you draw them?

because I can’t look down anymore, he said “Yes you can. You can use a tablet for drawing or writing.” So I tried it and it was successful.

Whatever I do on the tablet I can see on the computer screen in front of me, without looking down. It was pretty hard at first because I wasn’t used to it. I was really frustrated and I thought this is the worst thing. But then I realized it wasn’t so bad. I’m still doing what I love, the same as everyone else, but in a different way.

BLOOM: What advice would you give other teens with disabilities?

Heba Fakhir: You have to admit that you have a disability and figure out in your head that you’re going to be like this and think of a positive aspect of it. Like you have your friends and family around you and they will support you.

Or if you didn’t live in Canada, you wouldn’t have the services and technology to help with your medical issues. Even for education, I have an educational assistant that I wouldn’t have if I was still in Libya (and before that Iraq). And if I was someone else—if I didn’t have muscular dystrophy— I wouldn’t be who I am. My advice is to try to move on and be as independent as possible but know that there are always people who will support you, no matter what.

BLOOM: How do people respond to your technology?

Heba Fakhir: People don’t stereotype you as much when you’re a young kid. But when you get older people stare at you and talk about you. They treat you differently when they see the wheelchair and the ventilator. My advice is to be who you are and don’t care what other people think because in the end it’s their ‘disabled’ way of seeing. You need to live your life with everyone around you who love and support you. That’s all you need.

Heba Fakhir: When I went back to school and told the teacher I can’t do my art courses

BLOOM ~ winter ~ 2012 ~ 17

18 ~ BLOOM ~ winter ~ 2012

parenthealth

One dad’s formula for keeping a marriage strong Noor Al-Shaikh (back centre) wrote to me after reading a BLOOM story about the strain that round-the-clock caregiving places on a marriage.

Noor and his wife Rita have three children. Gisele, 10, and Sienna, 5, have a rare, non-progressive condition called Juvenile ALS type 2.

They can’t walk on their own and use canes, walkers or a wheelchair. Sister Iliana (centre front), 7, is not affected.

While challenging, Noor believes raising children with disabilities has strengthened his relationship with Rita.

BLOOM ~ winter ~ 2012 ~ 19

‘ It’s important to be confident in yourself, your partner and your kids. We celebrate a lot. We don’t want the girls to feel isolated or different. One important piece of advice is to surround yourself with positive people.’

BLOOM: How does having two children with disabilities challenge your marriage?

Noor Al-Shaikh: The demands are greater to coordinate medical and therapy appointments and to enable the girls to participate in activities other children enjoy. Sienna ice skates with a walker, Gisele goes to an art program and they both swim at the community centre. Iliana does competitive dancing three times a week. We want to have a life besides the medical. Rita and I both work and coordinating everything takes a lot of planning and communication. We try to keep stress away from our life by organizing and planning ahead. Nothing is left to the last minute.

At the end of the week I e-mail Rita a plan of what each child has every day the following week so we can identify potential conflicts. Having children with special needs has sharpened our communication and brought us closer.

BLOOM: Sometimes fathers and mothers find that they react differently to the diagnosis in their child, and it can be stressful if they aren’t experiencing things in a similar way.

Noor Al-Shaikh: We try to balance our emotions with facts. The girls have challenges, but that’s only one part of their lives—99.9 per cent of their lives can still be enjoyed. We live in the moment.

We don’t project what may happen in the future because we can’t control it and we try not to dwell on the negative. We’re focused on allowing the girls to enjoy experiences that other children have. We don’t worry about ‘what if’ this happens while they’re doing an activity. We worry about

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‘How can we make the activity happen? How can we work around any obstacles?’ Earlier this year we took the family on two road trips to the United States that included visits to water parks and an amusement park. Gisele didn’t miss a single rollercoaster ride. Looking at her, you would never guess she can’t walk. You would just see a happy child, enjoying the thrill of the rides. There are probably good reasons why a child who isn’t mobile shouldn’t go to a water park, but we make it possible with modifications and move forward. And when I see my girls smile, it gives me a perfect reason to try harder.

BLOOM: Do you have any strategies for improving communication between parents?

Noor Al-Shaikh: Once or twice a week we try to get out of the house to have a dinner together alone. Home can be a chaotic environment and we’re always acting as father and mother.

In a calmer, neutral environment we can share what’s coming in our life or talk about things we disagreed on. We listen to each other. I tend to be more logical and Rita tends to be more emotional, but usually within a few minutes we can get to middle ground.

Getting out gives us a time to regroup and think outside the box. We can ask: ‘Are we heading in the right direction? Are we overdoing it?’ The quality of the conversation is much better without the turmoil of three kids.

parenthealth

BLOOM: Who cares for the children while you’re out?

Noor Al-Shaikh: We have a live-in nanny. She isn’t involved in care related to the children’s special needs, or appointments outside the house. We decided we could spend our lives doing housework or we could spend more quality time with the kids. Our caregiver does the chores and gives us some flexibility to get out.

We’re grateful to have her as part of our family.

BLOOM: What other advice would you give parents who want to keep their marriage strong?

Noor Al-Shaikh: It’s all attitude and how you approach it. I’m a positive person. Even though my girls have special needs, it doesn’t mean life stops. Dwelling on the negative will only mask, confuse and cloud their potential. When I see Gisele happy and positive, and she has no choice but to use her canes everyday, I question why I’m complaining about little things. She has more challenges than I do and gives me a great perspective. It’s important to be confident in yourself, your partner and your kids. We celebrate a lot. We celebrate birthdays and holidays and any excuse to have family and friends over. We don’t want the girls to feel isolated or different. One important piece of advice is to surround yourself with positive people.

BLOOM: Can you elaborate on that?

neighbourhood and our church. We’ve often found that people who worked with Gisele have become family friends. We’ve been blessed with many friendships which may not have occurred had the girls not had challenges. This is something we didn’t expect or ask for. There are some parents of children with disabilities who are always complaining—about the system, and how lousy it is. And that may all be true. But there is a way to advocate for your child without being rude. I find that when you’re open-minded and positive, the impossible becomes possible.

That’s my motto and it works. I don’t want negativity to infiltrate my family. I don’t want people around us to feel sorry for the girls. I want them to share their joy, love and smiles, so that their canes and disability become invisible.

BLOOM: How can parents find people who want to be part of their child’s lives?

Noor Al-Shaikh: When you receive the news that your child has a disability you feel so isolated.

You feel there’s no one around you to care or to give a hand. What we’ve found amazing is that when you are comfortable sharing about your children—about the disability and other things—you find people who do want to be part of your life. You realize that there are others who want to help and support you.

Hear Noor Al-Shaikh talk about balancing a marriage and kids with special needs in a BLOOM clip at http://youtu.be/c2RNGoRju-o.

Noor Al-Shaikh: We have a huge support network of grandparents and friends from our

BLOOM ~ winter ~ 2012 ~ 21

Costs, quality-of-life assumptions put complex kids’ care at risk, doctor says

Pressure to contain health costs over the next decade will put the care of a small group of children with complex medical needs and severe disabilities at risk, says Dr. Chris Feudtner, a pediatrician and director of the department of medical ethics at the Children’s Hospital of Philadelphia.

“About 20 per cent of the pediatric population generates about 80 per cent of our health-care bill,” said Dr. Feudtner at a Grand Rounds on ethical considerations in the care of children with disabilities at Montreal Children’s Hospital.

of what are called marginal therapies—on drugs, therapies and procedures that cost a tremendous amount of money but offer little benefit.

It’s a short manoeuvre from that mindset to take certain people with certain conditions and marginalize them.”

“The rallying cry is that we need to cut down on the use

Dr. Feudtner showed a photo of one of his patients—a

22 ~ BLOOM ~ winter ~ 2012

baby who uses a ventilator— and said: “We don’t want to end up having a bureaucrat 1,000 miles away saying ‘this is marginal medicine and we need to cut it out.’”

In analyzing the costs and benefits of treatments, economists measure qualityof-life years gained or lost as a result, he said. These

partnership

analyses are typically based on models that assume low quality of life for people with chronic illness and disability.

Studies of self-reported satisfaction with life in people with disabilities, however, show a different picture.

A large European study of children with cerebral palsy found they rated their quality of life on par with their peers.

Research shows that patients rate their happiness and satisfaction higher than their families do, while their families rate it higher than doctors and nurses do. And the longer a person has a disability, the happier they are with their life. One to two years after a spinal-cord injury, people tend to rate their life as good as, or better than, before.

“Who judges quality of life in people with disabilities?” Dr. Feudtner asked. Should it be a panel of doctors, a random sample of the population who haven’t experienced disability or a group of patients or parents who understand firsthand what it means to live with the condition?

“Our current analyses of quality of life don’t account for the amazing capacity of people to adapt and grow, to handle difficulty, and to say ‘my life is good,’ without changing the difficulty.”

That’s because ratings are determined by ablebodied people who try to predict the impact of disability on everyday life.

Current analyses of quality of life don’t factor in the cost or benefit of a drug or treatment on people connected to the patient, such as parents, siblings and grandparents.

“Is medicine a one-on-one proposition or do we look at it from a societal perspective that includes people connected to the patient?” Dr. Feudtner asked. “If we cut respite care and a parent has to stay at home, do we count their lost wages as costs? If my child’s quality of life growing up makes me happier, do we count that? What are the ancillary benefits of having a child do better? There are instruments to measure family stress and depression.

If a family receives social

services, does their level of anxiety and depression drop?

Right now a huge amount of the costs of raising children with severe disabilities is being born by the families.”

In a study of families of children receiving palliative care, Dr. Feudtner found nearly half were facing substantial financial strain. And those who reported the direst finances had children whose health had declined most steeply.

“It’s hard to figure out how to capture these costs,” he said.

“But to disregard them means that you really aren’t operating from a societal perspective.”

With unsustainable healthcare costs projected over the next decade, “ethical pronouncements about ‘it’s the right thing to do for children’ will not have the same sway they had in the past,” Dr. Feudtner said. “We have to marry the ability to speak to deep ethical values and go head to head with accountants.”

BLOOM ~ winter ~ 2012 ~ 23

siblingissues

Pillow: A sibling’s story

Every time Sister packs for a trip, she takes along Pillow, a battered cushion in a rectangular cotton cover. Mysteriously stained, once-white, with a print pattern in faded primary colours, Pillow looks suspiciously childish for a trilingual woman in her 20s fearlessly travelling the world.

Sister recalls the day she got Pillow. It was a spring afternoon, and her parents wanted to visit the new IKEA store. They usually went everywhere as a family, but Brother was so slow and clumsy. He touched everything, spoke loudly and often made everyone stare in public places.

Sister felt embarrassed just imagining what could happen if they all went together. She knew they couldn’t afford a

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babysitter. Her parents were eager to go out for a change of pace, so she said she’d rather stay home alone with Brother.

Easier for everyone that way.

Mom and Dad are back, their arms full of new things. After describing the taste of the Swedish meatballs, Mom holds out a small white pillow.

“We got something for you, Sister. This is your reward for being such a good sister while we were out shopping.”

Surprised, Sister wonders: What about Brother? He’s been home alone as well.

Looking closely, she notices bright red teddy bears, pinkfaced dolls and yellow trucks all over the pillow. Do her parents think she’s still a baby?

Just this morning they said, “You’re very mature for your age. We know you’ll be fine looking after your brother until we get back.

Thanks for offering to do

siblingissues

this.” Sister panics. Wait.

Have I missed something?

She runs through her checklist: I made sandwiches for lunch, cleaned up the kitchen, told friends I can’t play today, helped him in the bathroom, played in the yard, then sang softly to calm him down after he got scared by a neighbour’s dog. She inspects his face and hands.

They look clean enough.

Holding her breath, Sister wonders if they will detect that Brother tripped and scraped his knee while running in the yard. Parents and teachers seem to have a way of knowing when something bad has

happened, even when kids don’t tell them right away.

What if they notice the scrape later? They’ll be so angry at me for letting him hurt himself.

Selfish me, I was the one who wanted to play outside since it’s so nice out. I knew I should have kept him inside all day.

I’ll never forgive myself if his leg gets infected now.

Sister decides to volunteer to help with bath time. That way nobody else will see the scrape. I guess it’s okay I didn’t call the doctor. It wasn’t an emergency. She puts on three drops of iodine to disinfect the scrape before sticking on the band-aid, just as she’s seen her parents do a million times.

As she takes the pillow, Brother hugs her. “Thanks for taking care of me. I’m so happy you’re my sister.” What a relief. Brother’s already forgotten about his scrape.

Sister isn’t sure whether she deserves this unexpected gift.

She’s anxious to get to the math homework she hasn’t even started. She presses the pillow to her chest and says the magic words that make them smile. “Thanks, Mom and Dad. You can go to IKEA anytime you want.”

BLOOM ~ winter ~ 2012 ~ 25

siblingissues

Should kids be asked to care for a disabled brother or sister?

A note from the author of Pillow: A sibling’s story I wrote this story to illustrate how typical siblings may feel when they provide “respite care” for their parents. Research shows that parents often believe that their children are emotionally mature enough to recognize their own developmental needs and to speak up for themselves.

One parent said, “I know if it’s too much for her she’ll tell me.”

Let me tell you a secret: we sibs don’t tell our parents how we truly feel. Our motto is “Never mind me; you have enough to deal with. I’ll figure it out by myself.” If our behaviour seems untroubled and serene, that’s because we are experts at hiding our worries, resentment, envy and nightmares.

In families untouched by disabilities, sisters and brothers fight, argue, sulk and express the whole spectrum of feelings toward each other.

In our families, we never get that opportunity. With our sibs, it is never a fair fight.

Even if we have a just cause, the disabled child usually gets the lion’s share of our parents’ attention and sympathy.

We’ve learned through experience that we are

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rewarded with positive attention from parents for being the easy child, and sometimes reproached for making more trouble for you. So we often help you without complaining.

We watch you every day.

We see that parents have far too much to do, resources are lacking, and there aren’t enough hours in the day.

When we notice how exhausted you are, we fear that you won’t be able to take care of us adequately, or you might have to quit your jobs, and where would we be then?

So we volunteer to give you a break, thinking this will help the whole family survive.

“Parentification” is what happens when children perform the role of parent at the expense of their

own developmentally appropriate needs and pursuits. When children take on responsibilities performed more appropriately by an adult, they feel torn between looking after the vulnerable sibling and taking care of their own needs.

If a child or teenager (mistakenly) perceives that his needs are less important than the needs of others in the family, he may volunteer to sacrifice time and energy he would otherwise devote to school, friendships and typical childhood activities.

Research shows increased risk of psychological and social problems in some siblings who are burdened by excessive caregiving roles and who, in effect, become ‘little parents.’

siblingissues

Here’s the good news: the whole family benefits when parents take breaks from the exhausting work of caring for a child with disabilities. Parents need to take care of their own health by asking support staff, neighbours, friends and family members to help out.

Doing so gives them precious time to rest and recover from the stresses of parenting a child with disabilities.

Even if your typical child is eager to babysit, and is supremely confident she can handle it, please make sure an adult is supervising her at all times. That way, she doesn’t have to function as an adult before she is ready.

By helping but not being in charge, typical children can continue to focus on what they need to be healthy and safe.

Trust me, we siblings of kids with disabilities feel intensely guilty whenever we play with other kids, master skills that the disabled sib will never learn, or pass for normal in a crowd. We’re acutely aware that we are very lucky to be non-disabled, and that we might have been born in the disabled sib’s shoes.

Some of us are forever trying to make it up by being on our best behaviour, concealing our negative feelings and accepting more than our fair share of household chores.

Many of us see ourselves as Super Sibs: born to babysit.

You may even believe that we are more high-functioning and more emotionally mature than other kids our age. Don’t be fooled: we are kids with the same concerns

and complex emotions as other young people.

So if your child volunteers to babysit before she has become a competent adult mature enough to have her own children, I hope you’ll think of Pillow and Sister and say: “No, honey, go ahead and play. We’ll hire a babysitter, use respite, or ask other adults to help us when we need a break.”

Sophia Isako Wong has a 40-year-old brother with Down syndrome. She is an associate professor of philosophy at Long Island University in Brooklyn, New York. She writes about political and educational inclusion for people with cognitive disabilities and justice within family relationships.

BLOOM ~ winter ~ 2012 ~ 27

growingup

Explaining Mitchell A mom describes Fragile X in a way kids understand Every year Lori Beesley (above centre) goes into her son Mitchell’s school class to educate the students about Fragile X. She shares her speech below. The day she gives her talk, a note is sent home to parents, including Lori’s speech and her phone number. “After the first year, I was asked to speak with all the students in the school, so I moved from class to class,” Lori says. “As the kids got older, their questions went from things like ‘Can I catch Fragile X?’ to ‘Where will Mitchell live when he’s all grown up?’ and ‘Will he ever be able to get married?’”

Hi there, my name is Lori Beesley. I came here today to talk to you about something called Fragile X syndrome. It is the most common cause of inherited mental impairment in the whole world. In fact, there are thousands of boys and

28 ~ BLOOM ~ winter ~ 2012

girls everywhere in the world that have Fragile X. To tell you the truth, I had never even heard of Fragile X until many years ago. Then a doctor told us that our son Mitchell had Fragile X syndrome.

I know that some of you already know who

growingup

Mitchell is, because you have been in his class, or from daycare. I’m here to tell you a little about Mitchell, Fragile X, and how it affects our family.

When someone has Fragile X, it means that before they were born, a tiny part inside their brain didn’t grow the same way that most people’s do. Their brain is the same shape and size as everyone else’s, there is just a little, tiny part inside the brain that is different. That tiny part makes them act differently and learn differently.

Have you ever been in class and the teacher is explaining something, it might be science or math or spelling, and you just don’t get it? You are trying to understand and you just can’t? Put up your hand if that’s ever happened to you. I know it used to happen to me too. You know what I would do? I would ask someone else to explain it to me, a friend or another teacher or my mom or dad. When that new person explained it to me, I would get it. I’ll bet that you know what I mean. The reason that you get it is because that other person explained it in a different way, and another part of your brain understood.

People with Fragile X can have a really hard time learning things in the classroom. Sometimes they have to learn the same thing over and over, explained to them in lots of different ways before they get it. When we were teaching Mitchell what a dog was, we had a book with a picture of a dog and we’d point to it and say “dog.” After a while, Mitchell knew that picture was a dog.

Then, one day we were at the store and there was a dog tied up. I pointed to it and said “dog.”

Well, Mitchell looked at me like I was CRAZY. I knew that he thought that “dog” meant the picture in the book. This dog in the store was brown. The one in the book was black

and white. This dog said “woof” and the one in the book didn’t say anything. This dog moved and wagged his tail, and the one in the book always stayed in the same spot.

We decided that we had better try something else with the picture in the book. Next time, when we looked at the book, we said “woof.”

Then Mitchell learned that dogs make a noise.

Every time we saw a real dog, we said “woof” and one day Mitchell said “dog.” He finally got it. It took Mitchell a long time to learn about dogs, and we had to figure out a way to explain it to him so he could get it. Now he knows and understands all about dogs, and lots of other animals. Sometimes he learns things faster, sometimes slower, just like all of you.

Fragile X makes people act differently too. Their brain lets in too much information all at the same time, which can make them upset. I’ll try to tell you what I mean. Put up your hand if you like to watch TV. Have you ever been watching TV all alone, when all of a sudden your brother or sister starts talking to you, then your mom tells you to do something, then your dad starts up the lawn mower outside, then the phone rings and ALL you want to do is just watch TV? How does that make you feel?

Pretty upset? Kind of mad? Does it make you want to yell at everything? You know what? People with Fragile X feel that way a LOT of the time.

Right now I know that you are all sitting here and listening to me. If you have Fragile X, your brain has trouble focusing on one thing.

That means a student with Fragile X might be smelling the floor cleaner, watching someone fidget, feeling the tag in the back of their shirt and trying to pay attention to me all at the same

BLOOM ~ winter ~ 2012 ~ 29

growingup

time. And that makes them feel the way you do when you get upset trying to watch TV. Someone with Fragile X can be trying so hard to figure out how to handle all that stuff that’s happening to them at once, that they forget how to act appropriately, or the way that they should. They might flap their hands like this, stand up when they should be sitting, or yell out something when they should be quiet.

It is their way of dealing with the way they are feeling. Sometimes it can make them feel better, and then sometimes it can make them more upset. Sometimes Mitchell even gets upset about something that happened to him a little while ago, but it’s just sinking in now. That is part of the mystery of living with Mitchell. We have to try to help him learn how to handle things that upset him, in a way that can help him feel better next time.

I know that some of you have asked me why Mitchell won’t say “Hi” to you if you see him outside of school, maybe in the park at the end of our street or up at the plaza. There is a very good explanation for that. I want everyone to think of someone famous right now—your hero.

Maybe a sports hero, a movie or TV star, a singer.

Now picture that tonight you are sitting having dinner with your family and the doorbell rings.

You answer the door and there is a huge stretch limo parked outside and the person you were just thinking of is standing right in front of you, saying “Hello!” Chances are you would not say “Hi, come on in.” Your brain would be so busy thinking “Why are they here? How did they get here? OH MY GOODNESS!” The person would still be standing in front of you and you are still not saying anything. Well, to Mitchell, all of you are HIS heroes. When he

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sees you outside of school, he’s not expecting it and so it throws him a curve. Kind of like seeing your teacher at the grocery store—you might feel weird and awkward. What you don’t know is that a minute after you say “Hi” to Mitchell, he usually says “Hi” back to you, but you miss it. That’s why his dad or I say “Hi” for him. We know he really wants to, he’s just overwhelmed at that moment.

The last thing I want to talk to you about is YOU! Mitchell’s dad and I want to tell you that we feel really lucky that Mitchell goes to a school where so many of you know him and try to help him. You are all the best teachers that Mitchell has. He will watch you, and see how you do things, then he will know how to do those same things. If Mitchell is doing something that he shouldn’t be, or acting silly, you can all help him learn the right way to do it, or a better way to behave. He will listen to you.

Even though Mitchell’s brain may not work in the same way as yours, his HEART does. He likes having lots of friends, to play and to laugh with, just like all of you. He likes to ride his bike and scooter, watch videos, and go to the park, just like all of you. He has his good days and his bad days, just like all of you. It’s nice to know that he has people here that care about him and help him through the bad days and laugh with him on the good days. Mitchell and everyone else who has Fragile X have special needs, but we know that as long as Mitchell has people like you around him, he will have a good life! Thank you.

Lori Beesley is on the board of directors of the Fragile X Foundation of Canada (www.fragilexcanada.ca).

Hear a mom talk about explaining her child’s limb difference in this BLOOM clip: http://youtu.be/M81THwGAHfQ.

researchhits

Science

roundup Parents play watchdog role in children’s hospital care Families play a critical role in reporting problems in the care of their children in hospital according to a study in The Canadian Medical Association Journal. Over one year, 544 families of children at BC Children’s Hospital answered a survey about drug errors, treatment complications, equipment failures and miscommunication. Almost half of 321 adverse events identified by families were deemed legitimate safety concerns. Family reporting didn’t alter the rate of safety reports by professionals. Only 2.5 per cent of events reported by families were reported by providers.

Parent expectations increase likelihood that teens with severe disabilities find work A study published in Intellectual and Developmental Disabilities found that parent expectations are a strong predictor of success in finding work for high school students with severe disabilities. “Students whose parents expected them to eventually become selfsupporting had significantly increased odds of having paid work compared to students whose parents did not expect them to,” the study said. And students who had regular chores were more likely to go on to paid work.

Everyday activities critical for families of technology-dependent children A study of 82 mothers of children who require ventilators and other equipment found that 39 per cent had symptoms that put them at risk of clinical depression one year after taking their child home. The study, published in Research in Nursing & Health, found families who functioned best took their child to everyday activities like soccer practice and camp and did this by being flexible about when they gave medications or food.

Health insurance inadequate for U.S. children with special needs, study finds About 14 to 19 per cent of children in the U.S. have a special health-care need, and their insurance is often inadequate to cover the care they require, according to a federally-funded survey. The percentage of children with special needs who have inadequate health insurance ranges from 20 per cent to 38 per cent across states. The survey found that children with special needs are more likely to be overweight or obese, less likely to be engaged in school, and more likely to have repeated grades.

BLOOM ~ winter ~ 2012 ~ 31

researchhits

Britain’s disabled children lead a life of exclusion, study says A research project at Manchester Metropolitan University asked what life in England is like for children with disabilities age four to 16. Researchers spoke to children, their parents, carers and professionals about their lives from 2008-2011.

Here are a few key findings: • families with children with disabilities are often isolated with little support in their communities; • despite changes in legislation, disabled children are still excluded from a range of leisure activities.

The biggest barrier was the attitudes of other people; • disabled children living with life-limiting conditions and their families are likely to experience isolation and poverty. Parents and carers are often excluded from support networks. The discrimination families face in life continues in death; • parents come under huge pressure to make their disabled children ‘normal.’

When families differ from the norm this leads to exclusion;

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• parents are often asked to talk negatively about their disabled children in order to access services and support. Parents say this has a negative impact on their relationship with their child; • children with disabilities often deal with negative perceptions of their bodies, including being stared at or questioned. Disabled children’s bodies often cause emotional reactions in others because they serve as a reminder that none of our bodies is normal; • when disabled children are viewed as ‘vulnerable,’ bullying is often accepted as inevitable. Often the bullying goes unnoticed by adults who are sometimes also the perpetrators.

Isolation the norm for disabled kids in Canada, study finds An alarming number of Canadian children with disabilities have no or few friends, according to a study of 166 families from Regina, Fredericton and Toronto.

The study, by Dr. Anne Snowdon of the University of Windsor, found 53 per cent of children with physical and developmental disabilities had no close friends or just one. Only 1 per cent spend an hour a day with a friend and 78 per cent don’t participate regularly in community programs.

Holland Bloorview was one of a number of partners in the research, which was led by The Kids Health Foundation, also known as “The Sandbox Project.”

researchhits

A study finds disabled kids shut out by teachers and students A 2011 Holland Bloorview study sheds light on how children with cerebral palsy are ostracized and bullied at school.

A qualitative study of 15 youth aged eight to 19 with cerebral palsy published in Disability and Rehabilitation found that teachers and peers intentionally shut out children with disabilities. Examples include teachers who turn off a communication device for most of the day—rendering a student silent—and a teacher who refuses to allow a child to have a bathroom communication button because it will disturb other children. As a result, the child, who is toilet trained, must wear diapers.

Sometimes accommodations weren’t made, researchers found. Other times accommodations themselves—such as having students write tests in a different room—set the children apart physically.

“There were more and more accommodations I would need that would make me stick out more different,” says one participant.

Many students said they changed schools several times because of the negative attitudes of teachers. They also found teacher attitudes influenced how their peers treated them.

Unintentional peer exclusion included leaving children out of activities because they were perceived as ‘fragile,’ busy with an educational assistant or ‘too slow.’

Intentional exclusion focused on children’s differences and included name-calling and being ignored. “The kids act like I am invisible,” one participant said. Four of the participants had been physically bullied over a number of years, which included being kicked and pushed and physically injured.

Students reported that they didn’t want to tell anyone about the bullying because they were ashamed.

In a follow-up study published in Child: Care, Health and Development, Holland Bloorview researchers asked the same group of youth with cerebral palsy how their participation in school life could be improved.

The students identified three key strategies: learn how to explain your disability to peers and teachers, rather than trying to hide it; improve disability and bullying awareness so students are more comfortable seeking help; and develop friendships by engaging in extracurricular activities.

Research shows that having a support network of friends protects children from being isolated and bullied.

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A gift for BLOOM 34 ~ BLOOM ~ winter ~ 2012

fromtheeditor

David and Lynn Coriat have donated $100,000 to BLOOM. I interviewed David to learn more about why his family made this generous donation!

David is executive vice-president and chief financial officer at Slaight Communications, an investment and entertainment company in Toronto.

Slaight is a partner in SiriusXM Canada. The Coriat’s significant donation will make both 2012 issues possible and allow us to expand into new formats, including a BLOOM speaker and video series. Thank you David and Lynn!

BLOOM: What is your connection to Holland Bloorview?

David Coriat: My connection is my daughter Jessica (left centre), who has seen Dr. Wedge there on numerous occasions after surgeries. Jess has an affinity for Holland Bloorview and her eyes light up whenever she’s there. She’s told us a lot about what Holland Bloorview does for the kids.

BLOOM: Why did you decide to make this donation to BLOOM? David Coriat: BLOOM offers parents a forum to learn more about other kids with disabilities and to learn about the environment as a whole— at a time when a lot of their friends and associates tend to move away from them because disability is still a stigma in our society. Parents of children with disabilities face challenges on a daily basis.

What BLOOM does is offer a forum for learning and sharing and the comfort that “I’m not alone.

There are a lot of people in the same situation.”

BLOOM: What have you learned as a father raising a daughter with a disability?

David Coriat: Our society still has a negative view of people with disability and our environment is not set up to nurture children with disabilities.

Unless they’re fighters, these kids get buried in the system and shunned. When my daughter went through the school system, she was

ridiculed. She has a strong personality and a tough skin, and was able to take it. But now I see her at 21 desperately looking for a job.

She passes all the phone interviews because she has the gift of the gab, but the minute an employer sees her walker, the doors close.

BLOOM: What changes would you like to see to improve the lives of children with disabilities?

David Coriat: It has to start at the political level where disability is put at the forefront. And there has to be education at the school level, because kids are mean—and their parents are even meaner—when they see a kid with a disability. I think it’s going to take a couple of generations before kids with disabilities are accepted as part of the mainstream.

BLOOM: Is there anything else you would like our readers to know?

David Coriat: The key in my mind, for parents, is that even in your darkest day there is always a light at the end of the tunnel. There’s always a friendly shoulder or ear out there if you look for it—particularly among other parents who understand the challenges. And that is why I wouldn’t hesitate to support BLOOM. It provides a forum for hope and gives parents perspective.

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The unlimited Sofia.

We’re creating a world without limits for children with disabilities.

You can help a child discover a world of possibility. Donate today: hollandbloorviewfoundation.ca

Holland Bloorview Kids Rehabilitation Hospital: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.hollandbloorview.ca

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36 ~ BLOOM ~ winter ~ 2012