Bloom fall 2016

FALL 2014

AROUND THE WORLD

SONGS IN A NEW KEY Composer Deirdre Gribbin says music is a powerful voice for kids with Down syndrome SIBLING ISSUES

How to help every child make their dreams come true CLINICAL CARE

What do you get when you put kids, a hospital and butterflies together? Magic RESEARCH HITS

Inclusion fosters movement in children with physical disability

FALL 2014

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.

Parent Talk*

Bookshelf

Share information and support with other parents at Holland Bloorview. Groups for parents of kids with autism, cerebral palsy, a variety of disabilities and inpatients.

El Deafo, Cece Bell, 2014 A funny graphic novel for middle-schoolers about a girl trying to make school friends with a bulky hearing aid strapped to her chest.

Family Education*

CONTRIBUTORS PUBLISHED BY: Holland Bloorview Kids Rehabilitation Hospital WRITER AND EDITOR: Louise Kinross DESIGNER: Sara Purves, Rubine Red Inc. PRINTER: Continental Press

Oct. 2, 7 to 8:30 p.m.

Immigration law (includes applying for permanent residency, sponsoring family members, applying for government benefits).

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.

Nov. 18, 7 to 8:30 p.m.

How to apply for funding (includes Assistance for Children with Severe Disability and Ontario Disability Support Program funding).

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.

Nov. 22, 9 a.m. to 4 p.m.

Headed to college or university? Tips on how to prepare and apply and services available.

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 BLOG: http://bloomparentingkidswithdisabilities.blogspot.ca

* Advance registration required.

E-mail resourcecentre@ hollandbloorview.ca or go to hollandbloorview.com, click on Client and Family Resources, then Workshops and Events.

Life Animated: A Story of Sidekicks, Heroes, and Autism, Ron Suskind, 2014 Pulitzer prize-winning journalist Ron Suskind describes how his son Owen’s love of Disney characters gives the family a powerful way to connect with him after he’s diagnosed with autism.

The Secret Language of Doctors, Dr. Brian Goldman, 2014 An emergency room doctor cracks the code on the verbal shorthand—sometimes witty, sometimes disparaging— health professionals use and how it reflects the culture of medicine.

inthisissue

FEATURES AROUND THE WORLD 06 ‘ I loved my grief because that was my brother’ 10 Composer finds the music in every life 13 A little magic while you wait PARENT TALK 14 ‘This is a love story’ SIBLING ISSUES 18 Everything you wanted to know about siblings 21 Tips for parents on brothers and sisters CLINICAL CARE 22 Mia meets a butterfly ROLE MODEL 24 A teen’s tips on raising great kids ACCESS NEWS 27 Furniture that fits every child TRAILBLAZER 28 This hospital trains and hires students with disabilities 32 Look how far we’ve come RESEARCH HITS 33 Science roundup 34 Free to move, free to learn

DEPARTMENTS RESOURCES 02 Parent support, books FROM THE EDITOR 04 Help us BLOOM FEEDBACK 05 Your letters and comments

On the cover Northern Irish composer Deirdre Gribbin says the birth of her son Ethan with Down syndrome led to a new emotional freedom in her work. In Toronto, she’s on a fellowship to write a string quartet for ScreenPlay, the interactive waiting room designed to reduce anxiety in outpatients at Holland Bloorview.

BLOOM ~ fall ~ 2014 ~ 3

fromtheeditor

It’s your turn

to help us Bloom

BLOOM is the voice of parents raising children with disabilities—a voice that’s missing in many mainstream parenting forums.

Now Canadian parents David and Lynn Coriat challenge you to raise that voice so that more families here and around the world can benefit from BLOOM’s online community of information, inspiration and support.

Make a donation to support BLOOM by December 31, 2014 and the Coriat family will match your gift, dollar for dollar!* Who are the Coriats?

They’re parents of a child with a disability, like you and me. For the last three years, David and Lynn have championed BLOOM with a substantial donation that funds the blog, print magazine, BLOOM speaker series and e-letter.

Their vision and generosity have allowed Holland Bloorview Kids Rehabilitation Hospital to lead

the international dialogue on childhood disability, bringing our award-winning content to families and professionals everywhere.

David and Lynn believe in the power of BLOOM. Do you?

BLOOM is an international phenomenon. We have readers in 166 countries.

When parents visit the BLOOM blog or open our magazine, they see and celebrate families like their own. They feel less alone, more empowered. They get the best parent and professional advice and the latest on clinical and research advances. But most importantly, they’re united in an international community that speaks their parenting language.

They feel heard and understood.

In this issue you’ll read stories from families in the UK, Italy, Holland, United States and Canada. No matter where you live, they will resonate.

Here’s how one parent describes the impact: “Every issue makes me smile, shed a tear, write down an inspirational sentence or piece of advice or lead me to research a new product or technology. I love the holistic, family-centred approach… especially the fact that sibling issues are not ignored. The stories in BLOOM touch and change lives.

What a wonderful gift.”

We’re asking for your support in order to reach more families with increased stories and content, meeting the needs expressed by our readers. Please consider a donation now, knowing that the Coriat family will match your gift and double its impact!

Every bit counts!

With gratitude,

To make an immediate gift online, please visit our secure website at: http://hollandbloorview.ca/BLOOM * The Coriats will match any donation to a maximum of $50,000.

4 ~ BLOOM ~ fall ~ 2014

feedback

FROM THE MAGAZINE, E-LETTER & BLOG I too have a son with a brain injury which he acquired at the age of 10, he’s now 20 (I am warrior mom: Hear me cry and roar, April 17). I continue to grieve at times when I see other boys his age progressing to a different level. The best advice I ever received after my son acquired his brain injury is: “You need to take care of yourself so you can take care of your son.” Do something for yourself, go for a coffee, call a friend, take a walk or read a book that makes you smile. And always remember: It’s okay to cry.

be overcome, and those that are truly irreconcilable, before resorting to conclusions about what is right and wrong. We are so far away from genuinely informed prenatal choice, that we should at least openly acknowledge the unknown and actively seek ways to know what can be known from the many family experiences that already surround us.

Franco Carnevale, clinical ethicist, nurse, psychologist, co-chair, Pediatrics Ethics Committee, Montreal Children’s Hospital

Jennifer Rolls, Toronto Thank you for this tremendously insightful and critical reflection on attitudes toward prenatal practices (When science doesn’t have all the answers, March 6).

Personal accounts such as yours are valuable demonstrations of how attitudes and practices relating to “anomalous children” are disturbingly uninformed, profoundly biased, and ethically problematic. History already provides strong examples of how conceptions of “normality” are rooted in social prejudgments and frequently result in actions that we subsequently consider inhumane.

We need to better understand the actual lives of these children and families, the joys and the hardships, the problems that can

My son is 28 now but I can so relate to this piece (The invisible mom, June 26). In all the years of school, my son had one invite to a party and I can’t think of a play date at all. My family has never seen him as anything other than difficult, and he was never invited to his cousins’ birthday parties.

No surprise then that he now has massive difficulties relating to people and fitting into society.

This is a horrible thing to do to a human being.

Anonymous, online Thank you David Coriat and family. I receive BLOOM at home and we keep the issues. BLOOM is an important part of our life.

Lianna Koerner, Ottawa

I always find new and interesting articles that combine the emotional as well as the scientific aspects about disability. It is refreshing to read about the struggles as well as the triumphs of dealing with disability on a lifelong, daily basis.

Bill Barber, Toronto BLOOM gives parents of medically fragile, medically complex, special needs children a voice. It gives parents a place to connect with one another and hear each other’s stories and learn from one another. BLOOM lets us know we are not alone and raises the level of awareness for all of us so that we can do a better job.

Julie Drury, Ottawa BLOOM is a beautiful magazine— it’s honest about the challenges of its subjects, and inspirational in its description of how people rise to the occasion of great apparent difficulties. It carries a message of honest hope, and must give many people facing intractable difficulties the certainty that their lives and their struggles are worthy and meaningful. It’s written with élan and moral clarity. It’s an invaluable addition to the literature of disability and difficulty.

Andrew Solomon, New York, author of Far From The Tree

Comment on these letters or send your own to lkinross@hollandbloorview.ca. Please note we edit comments for length.

BLOOM ~ fall ~ 2014 ~ 5

‘ I loved my grief because that was my brother’ Akhil Sharma on Family Life, his new novel about a family that unravels after a near-drowning leaves one boy profoundly disabled 6 ~ BLOOM ~ fall ~ 2014

aroundtheworld

By Louise Kinross

Family Life by Akhil Sharma is a semiautobiographical novel about a family’s journey to two new worlds.

In 1978 the Mishra family from Delhi, India moves to New York, a place that’s fairy-tale like to the Mishra boys with its hot-water taps, elevators and wall-to-wall carpeting.

Then, just as the older son, Birju, is accepted into a prestigious school, the family is upended by a catastrophic accident: Birju survives a near-drowning, leaving him with severe brain damage. He is unable to move, speak or see.

The story is told from the perspective of the younger brother, Ajay. While his mother becomes a round-the-clock caregiver who can’t give up the dream that Birju will “awaken,” his father becomes an alcoholic.

Ajay stands alone in his grief and guilt, raging against this new world in which the brother he knew is gone.

BLOOM: While your love for your brother was palpable in the book, I never got the sense that you felt you could connect with him after his injury.

Akhil Sharma: I remember right after we brought him home I spent hours talking to him and trying to get him to laugh and climbing on his bed and making noises so he would grimace. I do have the sense that something was there.

My experience was that there were two horrible things that occurred. I began to feel that I could get him to make little grimaces but I didn’t know what this meant. I was only 12. And I found it frustrating, not only because the response was

so little, but because my mother was forcing an interpretation upon this which made me unhappy. She said [Birju] was still inside, he was still the same. This made me really angry.

The other thing going on was I felt I had to do everything. I felt I needed to sit with him for hours every day and all day. At some point I began to not do so and my mother would shout at me and tell me I was selfish and that gave me further incentive to not interpret his reactions as meaningful.

BLOOM: Because the brother you knew was no longer there.

Akhil Sharma: Correct.

BLOOM: Why did you decide to write the book?

Akhil Sharma: I want it to be useful. I felt something really bad has happened, let me make something good out of it.

BLOOM: I think the book beautifully captures the love and resentment that exist between siblings. Before Birju’s accident you describe him as the person who’s most valued in your family.

Akhil Sharma: In the end what matters is not what the parents actually do, but how it’s experienced by the children. The child views the parents’ focus on the brother, whose studying to get into a special school, as sort of ‘Thank God they’re bothering him instead of me.’

BLOOM: Yes, but after the accident Birju becomes the focus because of his severe disabilities and you’re completely overlooked.

Akhil Sharma: They say the way deprivation works is you don’t know what it is. You don’t know what you’re missing. It’s like a vitamin deficiency.

BLOOM ~ fall ~ 2014 ~ 7

aroundtheworld

For me there are two things. It’s reasonable for parents to focus on the sick child. The character and I to some extent choose to make ourselves small. We realize that there’s this enormous need and we shouldn’t be in competition for resources. At some point Ajay begins to hold his breath and asks God to give the extra breath to his brother. The child chooses not to be a problem and chooses to win attention in other ways.

BLOOM: In one scene you’re bathing your brother and you begin to cry because you say ‘We’re not good enough people.’

This resonated for me because I’ve often found that my son’s disabilities show up all of my inadequacies.

Akhil Sharma: That is exactly right. Another way you are constantly aware of your inadequacies is that there’s this enormous need and you can’t behave in a perfect way, so you’re constantly getting angry. You’re always aware of your inadequacies and also of not having enough money, enough resources, of not being smart enough. You’ve got an insurance form to fill out and why does it take three hours to fill out? All of these things make you aware of being a failure.

BLOOM: You talk about wanting others to see that Birju mattered. Why did you feel he had been stripped of his value?

Akhil Sharma: Because I didn’t understand what this thing meant. I felt that because this thing was so enormous for me, I wanted everyone to value it in the same way I did, and other people couldn’t. They couldn’t comprehend it. They didn’t know what it meant to spend all of our time in hospitals. I felt that since our world had ended, other people’s world should have ended also.

BLOOM: Did no teacher or professional ever tell your parents that you, as the sibling, needed special support?

Akhil Sharma: No. We had none of that.

8 ~ BLOOM ~ fall ~ 2014

I remember how shocked I was when I read in Shakespeare where a king tells a mother ‘You grieve too much for your dead child’ and she says: Grief fills the room up of my absent child, Lies in his bed, walks up and down with me, Puts on his pretty looks, repeats his words, Remembers me of all his gracious parts, Stuffs out his vacant garments with his form; Then, have I reason to be fond of grief.

(Constance, in The Life and Death of King John)

I remember reading that and thinking holy sh*t: I loved my grief because that was my brother. If Shakespeare can do that to me, I hope when people read this book they feel that they’re not alone. When I was growing up it felt like I was the only one.

BLOOM: The injustice of Birju’s accident leads to a lot of grief and guilt. There’s a line in there where you talk about how ‘Birju needed to be okay to be okay ourselves.’ I think that’s a common feeling for parents and siblings.

Akhil Sharma: For me there were two things going on with survivor’s guilt. There was survivor’s guilt relative to my brother. I remember walking around my school field and crying and having a conversation with God and in one conversation he asked if I would switch places with [Birju] and I said no. And I immediately thought I can’t be trusted. I’m selfish. It wasn’t that I survived, but that I would choose to survive over him.

And the other type of survivor’s guilt was with my parents. When [Birju] first came home from the nursing home there’s a scene where I leave my mother behind to go to school. And while it’s okay that I have a life different from my brother, it’s not okay having a life different from my mother. I didn’t want a life like that, that allowed me greater privilege than my mother.

aroundtheworld

that internal life meant. Even a dog can suffer.

For me I was always comparing him to before the accident. The pre-accident brother was the real brother and he was always absent.

BLOOM: It seems that you were never given the opportunity to process your emotions in a way that would allow you to move forward, or to at least carry them in a different way.

BLOOM: Your mom wants to ‘try everything’ to cure Birju, even when some of the treatments are wacky.

Akhil Sharma: I viewed my mom as crazy.

He was not going to get better, this is crazy.

And some of this stuff costs thousands and thousands of dollars which we didn’t have.

BLOOM: I think it’s common for parents to go overboard with treatments even when there’s no evidence that they will be helpful.

Akhil Sharma: But the [healthy] child can see it. And the [healthy] child feels alienated.

Illustrations courtesy of Victo Ngai, reprint from The New York Times Book Review Photo by Bill Miller

BLOOM: Every member of your family had an immense need for support and never got any of it.

Akhil Sharma: I’m sure professional help would have been very useful. But really, what would have been best was seeing other people in similar situations and not feeling so alone.

Akhil Sharma: We don’t really move forward, we carry it with us, but viewing it in a different way, that seems to be a valid way of thinking about it. ‘Oh, that kind of thing happens to human beings. I’m a human being so why shouldn’t it happen to me?’ There are also wonderful things that have come out of this.

It’s made me very attentive and loving.

BLOOM: What advice would you give parents in terms of how to treat siblings when a child is healthy but then has a catastrophic accident?

Akhil Sharma: I think one thing to keep in mind is that the healthy child will spend a lot of time trying to protect you, the parent, and that that is a bad thing. Our very best qualities end up damaging us. I would say be engaging with your child. Talk regularly about how whatever the child feels is okay. You have a right to love the sick child and you have a right to take care of him, but part of the healthy child’s right is to receive his share of love and attention and we need to honour that.

BLOOM: I couldn’t get over the scene in the book when you and your mom come into the nursing home and find Birju propped on his side and tears streaming down his face because he hadn’t been turned during the night. Did that make you feel that he had more of an internal life than you thought?

Akhil Sharma: Yes. But I didn’t know what

BLOOM ~ fall ~ 2014 ~ 9

10 10 ~~ BLOOM BLOOM ~~ fall fall ~~ 2014 2014

aroundtheworld

Composer finds the music in every life Northern Irish composer Deirdre Gribbin has produced over 50 works—from orchestral music to her opera Hey Persephone!—that have been performed around the world.

Her UNESCO-winning work Empire States has played in 28 countries.

Writing music began as a way to express the conflict Deirdre witnessed growing up in Northern Ireland in the ’70s. “I saw things that kids don’t normally see,” she says. “Hijacked public busses blocking the road so you couldn’t go through, bomb blasts. I went to London to study and found myself writing about Northern Ireland. At a time when people couldn’t speak about Belfast politically, I could write about it in my music and I found it a powerful tool.”

Photos by: William Suarez

Deirdre’s orchestral piece Unity of Being: A Peace Anthem for Northern Ireland was the first international work to be performed in New York City after the 9/11 al-Qaida attacks and was the subject of a New York Times piece. “It made me realize how music could cross barriers, redefine boundaries and have such strong purpose in people’s lives,” she says. “Music didn’t need words to communicate solace, sharing and comfort.”

After her son Ethan was born with Down syndrome in 2006, Deirdre came to see music as a potential voice for people with intellectual disabilities. “Why can’t someone with a learning disability who can’t speak write the most moving or the most joyful or the most angry piece of music?” she says.

By Louise Kinross

“If given the right and best technical support, people with intellectual disabilities can be the controllers of their own musical fate.”

Rather than skills-based music therapy outcomes, Deidre is interested in how music making builds self-worth. “If you give someone the skills to make decisions about how they want something to sound—about the shape of the piece or the structure or whether it expresses a certain emotion—it becomes their music, and then they have the confidence to be able to assert their own decisions in other areas of their life.”

Deirdre, who lives in London, is starting a composing group for eight-year-olds with Down syndrome—called Down Right Excellent—which includes son Ethan. “We may use colours or shapes to represent notes or emotions or types of music. I’m going to give them the language of music—so not just describing rhythm as fast and slow, but spikey and energetic, and how that links into emotions. They’ll learn about how to put music together. And if you can hear something that you’ve done, the sense of self you gain from that can really build your self-esteem: ‘I can’t do this and this and this. But I can do this.’”

Deirdre says raising Ethan has had a huge influence on her work. “The expectation when he was born was that he would compromise my work, or that I wouldn’t have the time to write music. But I’ve written some of the best music in the past few years.”

BLOOM ~ fall ~ 2014 ~ 11

aroundtheworld

Deirdre attributes this to her time being more focused—she goes away on retreats where she can write all day—and a greater emotional freedom in her work.

music while working as artist-in-residence at the Medical Research Council’s Laboratory of Molecular Biology in Cambridge. Hearing Your Genes Evolve is the resulting string quartet.

“I’ve always felt instinctively that it’s important to express emotional states through what I write, but now it’s very much at the centre of what I do,” she says. “I feel much stronger as a person because I’ve had to develop and nurture Ethan’s life and our family’s life. When you’re the parent of a child with a learning disability— and the mainstream is often acutely aware and subliminally critical of difference—you have to develop a side of yourself that is quite defiant and tough and never be afraid to challenge.”

“I learned that my son and a child without Down syndrome have 99.9 per cent the same genetic code,” she says. “And in that big 99.9 per cent, there are more similarities than differences.”

After Ethan was born, Deirdre became interested in human DNA and how it works. “We were told that Ethan had an extra set of chromosome 21 and I came away thinking ‘What’s a chromosome and what does that mean?’” Last year Deirdre set a fragment of genetic code to

12 ~ BLOOM ~ fall ~ 2014

Deirdre wants to learn more about the content of chromosome 21. “Empathy, which is seen in people with Down syndrome, is genetic.

It’s something in the genetic information that’s not just nurture. We should be looking not just at negative effects of Down syndrome, but at what it enhances.”

And instead of only measuring human qualities that have a market value—such as intelligence or athleticism—we should be interested in “things that make us better people, such as being selfless, caring and open.”

aroundtheworld

A BIT OF MAGIC AS YOU WAIT

Composer Deidre Gribbin is working with Holland Bloorview researchers to bring sound to ScreenPlay, the interactive waiting room for outpatients at Holland Bloorview.

Families asked for music to be added, “so I’m working with researchers Elaine Biddiss and Pat McKeever to develop compatible sound areas that will work for people in four different spaces on the grid.

ScreenPlay is a grid of 100 coloured tiles that children can sit, stand, walk or wheel on to grow forest images on a screen—all while waiting for their appointment.

“The first piece I’m writing is birdsong. So depending on whether you walk into this part of the forest, or that part of the forest, you will hear different types of birds. The second piece is a string quartet. By moving in different spaces you’ll hear fragments of the string quartet work together. It’ll be like you’re talking to someone and two conversations are going on through the music. The effect will be simple and calming.”

“It gives children something fun to do, but studies show it also decreases anxiety around anticipating painful procedures because the kids are preoccupied,” Deirdre says.

Deirdre is working at Holland Bloorview as a Leverhulme Overseas Fellow. Later this year she plans to offer a music theatre workshop day for Holland Bloorview parents, caregivers and staff with her husband British theatre director Lou Stein. “We want to allow the participants to be creators in delivering their own stories. They will learn skills to compose their own music and theatre skills that develop selfesteem and stage presence.”

BLOOM ~ fall ~ 2014 ~ 13

parenttalk

‘ This is a love story’

By Louise Kinross

The Fall: A Father’s Memoir in 424 Steps is a book that will intrigue, delight and surprise you. Written by Brazilian author Diogo Mainardi, it’s made up of 424 short sections of text and images. Each marks a step his son Tito takes, with great difficulty, to reach a hospital in Venice where a medical error during his birth caused his cerebral palsy. As they walk, Diogo links Tito’s disability to great architecture, literature, historical events, movies and other cultural phenomena of the Western world.

BLOOM: The book begins with you blaming historical figures for the medical error that caused Tito’s cerebral palsy. I think many parents get stuck on ‘why’ their child’s disability happened. Why did you decide to link Tito’s disability to architecture, historical events and movies?

Diogo Mainardi: In my case it was ironical.

Obviously there is no direct link. In our case, I didn’t need to find a reason for Tito’s disability because it was very clear from the beginning that it was a medical error. So in our lives there were the facts—and there was a judicial process for dealing with those—and there were the feelings.

And the book tries to deal with them both.

14 ~ BLOOM ~ fall ~ 2014

To my incredible surprise, when my son was born my life was completely overtaken by feelings of love. Before he was born, I was anti-sentimental.

I didn’t believe literature was about feelings. I believed it was about ideas. In the past, I was unable to write about feelings. After five years of joy and love with Tito, I started to think about this love and everything connected very easily in my mind. I felt it was the right thing, the honest thing, to try to express this passion through the only means I had, which was writing.

I tied the ‘why’ of Tito’s disability to beautiful things, to things that I love because, to my surprise, from Tito’s birth onwards, it was

parenttalk

such fun to have him around and so enriching and exciting to follow every step he took.

It was a breathtaking and improbable and unexpected adventure. I couldn’t associate him with anything less than the books I loved, the pictures I loved, the buildings I loved.

BLOOM: In the book you talk about how the person you were died when Tito was born. How did his birth change you?

Diogo Mainardi: It humbled me certainly.

The first thing that happened to me was that I understood that I wasn’t the main character in my own life. I was a secondary character. I was not Costello, I was Abbott. I was the straight man, there to make things happen. That put everything in our life into a new perspective. I calmed down and enjoyed being the follower of someone as I could not have imagined before.

BLOOM: In the book your acceptance of Tito’s cerebral palsy is absolute and you say it was never a cause for sorrow.

Diogo Mainardi: It’s a strange process. I couldn’t and can’t see Tito in any other way. He is Tito with CP and I can’t imagine him in a different way so it’s an absolute acceptance because he’s my son and I love him just like that. It’s very hard for me to imagine myself loving, and at the same time, wondering if that object of love should be different from what it is. That’s the acceptance. But I can only talk to our tiny experience and I don’t try to imagine other parents’ experiences. The book is not about a father with a CP son, it’s about Diogo’s experience with Tito.

BLOOM: You talk about wanting to celebrate a son with a disability. Do you think you would have adapted in the same

way if Tito’s disability was more severe?

Diogo Mainardi: Yes, I would have adapted in the same way. If it involved physical suffering it may have been different. Tito doesn’t have any physical suffering. At the beginning when we learned Tito had CP, during the night my wife and I would worry and talk about being worried. But as soon as Tito woke up, the worry would immediately disappear because the idea is much more terrifying than the fact—than the child itself.

BLOOM: Tito is associated with falling in the book, due to his tight muscles, and there are references to the biblical ‘fall.’

You talk about how your wife Anna fell in front of you and Tito when he was a baby and he laughed and that helped you to see that we’re united in our imperfection.

Diogo Mainardi: That was the turning point. I had already accumulated literary experiences that helped me to have lower expectations about man’s accomplishments. I was very much into comical, humorous literature and that helped prepare me to not idealize my own son.

BLOOM: The book conveys the idea that imperfection is part of the beauty of being human.

Diogo Mainardi: Tolerance is the end result of diminishing our arrogance, isn’t it? I don’t think you have to have a disabled child to learn to live with that idea. The most extreme case of human arrogance was Action T4, the Nazi’s project to kill disabled children. The opposite is the acceptance of humans being flawed.

BLOOM: The part of the book where you link the Holocaust back to the German who first asked Hitler to kill his son because he couldn’t accept his disability was very compelling. Why is it so hard for us to accept disability in our culture?

BLOOM ~ fall ~ 2014 ~ 15

parenttalk

Diogo Mainardi: It has always been this way.

Children with disabilities were killed in ancient Rome and they’re still killed in Indian tribes in the Amazon. It’s something that’s seen as unacceptable. I’ve always seen my book as part of a larger world. It’s a love story between me and my son and the difference between other love stories is that the handicapped child was segregated or put in a ghetto. I don’t accept segregation. Tito is part of literature and part of a love story because I’ve never seen him as being excluded. Tito brought me a sense of reality. The things I knew by reading, by seeing, by thinking became so incredibly real.

For example, I was horrified by the Holocaust, obviously. I knew intellectually what it meant. But after I had Tito I had my own Auschwitz survivor at home.

BLOOM: Is Tito accepted in your town?

Diogo Mainardi: In our small village in the book Tito is very much part of the landscape. He is accepted and he’s also protected. In Venice, Tito manages to go from our home to school walking by himself with his walker and he gets out of the vaporetto [water taxi] and gets on the school lift and goes by himself. Obviously, he has no friends.

BLOOM: What? He has no friends?

Diogo Mainardi: Everybody likes him and is very tender to him, but he’s 13 now and the 13-year-old boys and girls are not ready to listen to someone who speaks in a slurry way or has difficulty walking from one place to the other and is much slower.

This is something that we can’t impose.

BLOOM: But doesn’t the school have a responsibility to educate students?

Diogo Mainardi: Trying to instill tolerance in a forceful way doesn’t work. I tell the teachers to try

16 ~ BLOOM ~ fall ~ 2014

to see disability as a resource and opportunity.

Last year Tito’s class learned about World War II and the part of my book about Nazism and the T4 project was read to all the children. They knew Tito had a father who wrote about how he loved his disabled boy and they learned about something that happened in their grandparents’ lifetime—the greatest monstrosity of all time. I think that’s a more effective way of integrating children with disabilities.

BLOOM: Doesn’t his lack of close friends make you sad?

Diogo Mainardi: Yes, it does. But at the same time everything we try to accomplish with him is to make him strong enough to accept the fact that being different means his relationships with people will be different, and he should be proud of his difference and conscious of it. We never say ‘You are just like the other boys.’ We always say ‘You are a fantastically unique boy and while the uniqueness has many disadvantages that you have to learn to deal with, it also defines many wonderful things and hopefully you will find them as wonderful as we do.’

We try to teach Tito and our other son values and principles and this is part of what a parent can do, which isn’t much, but we can show through example how we feel about him being what he is and that’s what we try to do. We cannot try to overreach. It’s so frustrating to try to solve every little animosity and instill in other people respect of a disabled child. It’s too big a war. We prefer to win small battles and everyday battles and mainly to reinforce him so he can try to do it himself.

parenttalk

BLOOM: You make reference to overcoming the need to overcome Tito’s disability in your book.

Diogo Mainardi: That’s something which we abdicated very soon, because we understood some obstacles can’t be surpassed.

You can’t surpass every single obstacle and you have to accept and conform yourself to the differences or difficulties that exist. As you know, there is also a book genre of people with disabilities who climb the Himalayas.

BLOOM: I hate those books.

Diogo Mainardi: I have to accept that we won’t and we can’t and we’re not supposed to. I say leave Mount Everest over there. Tito has great difficulty walking so let’s get him a small ramp and a bridge and that’s all I asked. I think there’s a tendency to patronize and look for stories of victory over failure. We accept our failure and we accept that our son might fail and we will fail. That helps to put things in perspective because my son’s flaws are my own flaws. They are no different than mine.

Having Tito made everything real. Things were not ideas anymore, they were a part of my life.

There have been thousands of years of ‘falls.’

BLOOM: I loved the book because it linked disability to all of the great stories in history.

Diogo Mainardi: This is a love story and a family story. Years ago children with disabilities were not part of families’ stories because they were segregated. They were locked in a dark room. Not now. Shakespeare wrote about families and conflicts in families. This is a family. I’m not Shakespeare. People can connect with families and I expect them to accept my son as part of the family.

No one outside our world will read something that’s simply about cerebral palsy. We need to enlarge the subject. When we talk about larger phenomena and larger ideas and when we mix disability with tolerance, with having a less limited view of mankind, it enriches our own experiences. That’s what I tried to do in the book. It’s our story, but it’s a common story that has a past in the great stories of the world.

BLOOM: Do you think the book can reach people who don’t have experience with disability?

Diogo Mainardi: Yes. I try to break the barrier and go to the other side because it’s the side in which we’ve lived the whole of our lives before having a handicapped child. We need to talk to both sides. As Tito’s father I could take him and show him to the rest of the world and I could show the rest of the world to him.

BLOOM: Has Tito read the book?

BLOOM: What do you hope readers take from the book?

Diogo Mainardi: I hope they have fun. I hope they can see how much fun our experience with Tito was because it was, for us, really a breathtaking adventure and the love was such a great, unexpected feeling at that moment in my life.

Diogo Mainardi: Yes. I asked his permission to write the book beforehand and after a certain reluctance he accepted it and participated in it.

He helped me find the photos and took some of the photos we used. He was very proud of the book when it came out in Brazil and was a great success. He went to the Edinburgh Book Festival recently and signed the book.

BLOOM ~ fall ~ 2014 ~ 17

siblingissues

siblin

Everything you wanted to know about

18 ~ BLOOM ~ fall ~ 2014

ngs

BLOOM ~ fall ~ 2014 ~ 19

siblingissues

By Louise Kinross

Last year Dutch journalist Anjet van Dijken published the Brothers and Sisters Book, a first in Holland for siblings of children with disabilities, chronic health conditions and/or mental illness.

Anjet, 38, grew up with an older brother Jalbert, who was born with a visual disability and autism. In her book, Anjet interviews 36 siblings aged six to 69.

Her goal, she says, is to let all siblings know that they’re not alone, their thoughts and feelings matter, and that they must pursue their own dreams to be happy. Only then can their adult relationship with their brother or sister “come from the heart, rather than feel like a must-do obligation,” Anjet says. Below Anjet speaks about her book. On the next page she shares tips for parents.

BLOOM: Why did you decide to write your book?

Anjet van Dijken: The main reason is that I didn’t want other siblings to feel alone, as I had for so long. No brother or sister should grow up thinking you’re the only one with questions, with thoughts, with conflicting emotions.

You can be proud of your brother and at the same time ashamed, and then angry for being ashamed, and then sad because you were angry.

My first idea was to write my own story. But then I felt strongly that if I interviewed 36 siblings, readers could see that they weren’t the only one.

The other thing is I want to make siblings think about what they want in their own life. I want to show them by reading others’ stories that everyone is wondering about their place in the family and in the future, including their role in their sibling’s life.

20 ~ BLOOM ~ fall ~ 2014

Dr. Tinneke Moyson, the researcher who contributed to my book, found siblings tend to put themselves in the background. Out of loyalty, they feel they have to obey their parents and continue putting the [disabled] sibling in the centre of the family.

For siblings, trying to put yourself in the background and living your life doesn’t work: it catches up with you.

Though living your own life is not easy—especially if your parents have different expectations for you—I tell siblings they have to think about what they want first, and then how they’re going to be a part of their brother’s or sister’s life. Only then can they do it wholeheartedly.

BLOOM: What’s the most common challenge for siblings?

Anjet van Dijken: The first thing I noticed was that 33 out of 36 I interviewed said they

had never ever talked about this to another sibling. They had never met another sibling of a child with a disability.

I loved writing the book because there’s no judgment between siblings when you have been through the same experience. Even though one person has a sibling with autism and one has a sibling with Down syndrome, they don’t look at what is different, but where are they the same?

What can we relate to?

The common denominator is that you always defend your brother or sister first. If you interview a sibling they will tell you all the positive things first because it’s so important to them that others see their brother or sister as a person.

You want them to be accepted.

Then, if you feel understood, you will share what’s difficult.

Tips Accept the situation with your child with a disability as it is as soon as you can. Fear and guilt are toxic for the whole family. So work on acceptance every day, and do not hesitate a second to ask for assistance.

Connect with other parents of children with disabilities or find a therapist who’s worked with families like yours. Your family needs some outside eyes to make sure you’re doing enough for yourself. You have to fill yourself up in order to be able to give to your children.

Create an ‘open communication’ environment where every member of the family can talk about feelings and thoughts, where every opinion counts. You can do this with siblings by staying longer at the dinner table, going for a walk, or having alone time before bed.

Accept help. Maybe a neighbour will offer to babysit. Parents always say ‘No, I can do it on my own.’

‘I can do it on my own’ is the worst thought you can have, because at some point you won’t survive your child.

siblingissues

for parents on brothers and sisters

From the age of four, give siblings age-appropriate information that they can share with their friends. Let siblings know by age six that you want them all to live their own lives.

Share any future plans you have for the child with disability.

A lot of siblings say they’ve had so much praise for their good behaviour and they feel they can’t live up to that standard. Emphasize other things in your child’s character, not just that they’re helpful.

Encourage them to think for themselves and be proud if they dare to say ‘No’ to you.

Siblings mimic how their parents deal with situations.

If you’re sad, but you’re trying to hide your emotions, your child will try to do the same.

But the child comes to believe ‘My emotions don’t count.’

Ask a friend or your child’s teacher for advice about your children who don’t have disabilities. ‘What is your view of my son? How do you think he’s doing?’ Siblings tend to hide their feelings from parents, but may be more open with friends and at school.

____________________________ Help your children develop their dreams. When your son does something out of the ordinary, or says ‘I really want to do this,’ and it has nothing to do with the disabled sibling, be proud.

Know that you won’t always be the best person for your children to talk to about their brother or sister with disability. Look for ways to connect your children with other siblings (support groups, books, through your children’s rehab centre).

Anjet can be reached on Twitter @DutchSib. Her book is available in Dutch but she would love to hear from families and professionals who would like it translated into English. ____________________________

BLOOM ~ fall ~ 2014 ~ 21

Mia meets a butterfly

22 22 ~~ BLOOM BLOOM ~~ fall fall ~~ 2014 2014

clinicalcare

By Louise Kinross

Mia Pruder’s sparkly-gold nails clicked excitedly on her wheelchair tray.

participate in related activities like making butterfly masks or cut-outs.

The seven-year-old was in her hospital room at Holland Bloorview and a large, clear canister with a newly-hatched monarch butterfly was placed on her tray. It perched, with brilliant orange wings tipped with white dots and marked with black veins, on the side of the container.

The caterpillar’s metamorphosis into a shell, called a chrysalis, is so unusual a process that even Effie says “no words can describe it. The caterpillar’s skin opens up and it goes inside.

It then spins a web on the mesh at the top of the canister to hold itself upside down in a J-shape. When they shed their last skin, they wiggle and the skin coils up and falls off.”

Several green chrysalides hung from the mesh lid, each with a strip of tiny gold beads on its case that looked as decorative as Mia’s nails.

At the bottom, a caterpillar striped black, white and yellow was crawling over a leaf.

Mia, who has an auto-immune disease and suffered a stroke following a surgery, eyed the suspended green shells intently.

The travelling canister is home to eggs, caterpillars, chrysalides and butterflies that intrigue child audiences within the walls of the rehab hospital.

“Children may not have the opportunity to get out of the hospital so it’s great to bring nature indoors,” explains Effie Biliris, a youth facilitator who coordinates the Blooming Butterflies Program at Holland Bloorview.

Photo by: William Suarez

“We use monarchs because their transformation is so visible,” says Robyn Sanford, coordinator of participation and inclusion at Holland Bloorview. “Every stage is distinct and the kids can see what’s happening.”

The monarchs are ideal for use in a hospital because they pose no infection risk, are silent, require little care and don’t disrupt patient care.

In addition to observing the creatures and learning about their care, children

Within 24 hours of emerging, the monarch butterflies at Holland Bloorview are released back into nature.

Mia was pushed in her wheelchair out onto a terrace where a butterfly was placed on the back of her hand. It waved its wings majestically, tickling her skin. She was told to make a wish and the butterfly, named Molly after her beloved pink cat blanket, flew away. Mia understands everything, her mother Heather says, but her stroke has taken her speech.

The butterflies are also released in the ravine behind the hospital in Spiral Garden, Holland Bloorview’s outdoor integrated arts camp.

These ceremonies take place in Butterfly Garden, which is dedicated to the memory of Jamie Burnett, a beloved therapeutic clown who created his own magic for our inpatients before dying of a brain tumour in 2011.

The Blooming Butterflies Program is funded by the Norman and Marion Robertson Charitable Foundation and based on How To Raise Monarch Butterflies: A Step-by Step Guide for Kids by educator and photographer Carol Pasternak. Carol taught Holland Bloorview staff how to care for the butterflies and release them with the help of clients.

BLOOM ~ fall ~ 2014 ~ 23

rolemodel

A teen’s tips on raising great kids

Hi my name is Abdi! I am 18.

I have a disability called cerebral palsy. This disability causes my muscles to stiffen up and gives me back pain, which is why I have a power wheelchair to assist me wherever I want to go.

The ODSP helps people with disabilities who are in financial need pay for living expenses like food and housing. My parents contacted the government and helped me to set up meetings to follow through on my application.

If parents are unsure about how to apply for this funding, I strongly recommend contacting your social worker or asking another health professional at your children’s rehab centre.

I’m going into my fifth year of high school to upgrade some of my courses like English.

I really enjoy writing stories and news articles. I love to exercise in school and have a great time hanging out with my friends.

Number two, my parents have started letting me take more responsibility for my actions. For example, I’m now able to book WheelTrans on my own, where before my mom would speak on my behalf. This is important because as your kids get older, they want to take control of their lives. I feel proud when I do things on my own. I want to be able to look after myself and show my parents that living on my own is a realistic goal.

Here I’m going to share my tips for parents who have kids with disabilities. I’m going to talk about how you can make sure your kids are safe, happy and as independent as possible.

First, I am going to tell you about three things my parents did that have improved my selfconfidence and ability to be independent.

Number one, my parents learned about, and helped me to get, the equipment and supports that I need. My parents supported me in applying for the Ontario Disability Support Program.

24 ~ BLOOM ~ fall ~ 2014

The final thing my parents have done well is show me a lot of love. That really encouraged me to do my best and to believe that I could set my mind to anything. My parents always were there when I needed help with something.

Your kids can probably tell by what you do and how you talk to them that you love them. But I think it’s a good idea if you tell your child every day that you love them.

Photo by: William Suarez

By Abdi Hassan

‘As parents reading this, I want you to take a look at your child and smile and tell them you love them. To me that is the best way to stand alongside your child with a disability and to make sure that your child is safe, happy and as independent as possible.’

25BLOOM ~ BLOOM ~ fall ~ fall ~ 2014 ~ 2014 ~ 25

rolemodel

Now, I’d like to talk about three things I wish my parents had done to help me feel confident while having a disability.

To start with, sometimes my parents make it hard for me to go out with my friends.

They may not take me seriously when I tell them I want to go out or they may not let me go because they’re worried about me.

Having friends in my life is amazing. It’s like having siblings but they don’t live with you. I have the coolest friends that I know. They make me laugh and make me happy to come to school every day.

Finally, I sometimes feel that my parents overreact around me, especially when it comes to my wheelchair driving. Sometimes they say I can’t drive my chair, and that I crash into walls a lot.

Occasionally, my body is in so much pain in the mornings that I do crash. I can’t help it.

But it makes me feel upset when my parents panic about accidents. And that makes me more likely to have an accident, because I’m anxious about what they’ll say.

So parents, as much as you can, try to remain calm and don’t panic with your child. Encourage your kids to ask for help if they need it.

It’s hard to have fun with them after school, though, because my parents are too cautious.

They don’t always feel comfortable letting me make my own decisions when it comes to my social life. Think about how you can support your child so that they can see their friends regularly.

I hope you enjoyed my story. My message to kids with disabilities is that their disability shouldn’t stop them from their dreams and aspirations. Keep on fighting and never give up. Stay positive—that attitude always helped me work hard and become a better person.

Next, I sometimes feel like my parents don’t think that I’m going to have a career or be able to continue my education after high school. While they ask my siblings, who don’t have disabilities, about what they’re going to do when they graduate, they don’t ask me.

It makes me feel like they think I’m going to stay home for the rest of my life. But the ultimate goal for me is to live independently.

My parents have a hard time dealing with the fact that I want to live on my own. I want my parents to know I still love them, no matter what, and I’m not trying to disown them.

As parents reading this, I want you to take a look at your child and smile and tell them you love them. To me that is the best way to stand alongside your child with a disability and to make sure that your child is safe, happy and as independent as possible.

So please, talk to your kids and teens about what they want to do when they grow up and finish school. Help them dream.

26 ~ BLOOM ~ fall ~ 2014

accessnews

Furniture that fits every child Jason Nolan directs the EDGE lab at Ryerson University where students design custom furniture out of cardboard for children with disabilities.

Photos by Annie Sakob and Jason Nolan

His first project was a corner chair made of three pieces of cardboard in the shape of a two-faced, hollow triangular pyramid.

It was made for a three-year-old girl who couldn’t sit up independently and needed an adult to hold her while she played in the sandbox. When the girl attempted to play with other kids while being held, they ignored her.

But once she could play on her own using the bright orange and yellow chair that Jason and a student designed, other kids no longer registered her difference. Within minutes, they began communicating, and brought their games to her.

One of Jason’s graduate students documented the group of kids over the course of a year as part of her thesis. She found that during that time, the girl’s preschool classmates continued to modify their play without having to be asked.

For Jason, an early childhood studies professor who has autism, that is what adaptive design is all about: changing the environment the child is in, as opposed to changing the child. “For me, children aren’t disabled, I’m not disabled,” he says. “Society disables us. The problems that children with special needs have are created by society. Either by how we physically build the space, or how we engage other people.”

To read more, visit the BLOOM blog and type “furniture” in the search box.

By Megan Jones

BLOOM ~ fall ~ 2014 ~ 27

28 ~ BLOOM ~ fall ~ 2014

trailblazer

By Louise Kinross

This hospital trains and hires disabled students, including patients!

Project Search partners with businesses, schools and community agencies to run ninemonth skills training programs for high school students with intellectual disabilities. In 2013, the project, which began at Cincinnati Children’s Hospital 18 years ago, had grown to include 285 business sites worldwide and 69 per cent of graduates that year got jobs.

The project trains students in complex but routine jobs from sterilizing surgical equipment and making defibrillators to working on a carpet-making production line.

BLOOM interviewed Erin Riehle (left photo centre), director of disability services and Project Search at Cincinnati Children’s.

BLOOM ~ fall ~ 2014 ~ 29

trailblazer

BLOOM: How did you get the idea for this project?

BLOOM: How many people with disabilities are employed there today?

Erin Riehle: I’m a critical-care nurse and I used to be the director of the emergency department here. One day I was sitting in my office, right off the waiting area, and I looked out and noticed that a lot of the people sitting there waiting were people with developmental disabilities.

Erin Riehle: We have 58 people with significant intellectual disabilities working here at Cincinnati Children’s and they’re in a wide variety of jobs. We also have another six programs in the Cincinnati community we manage and each trains about 12 young people a year. Not all kids with disabilities want to work in hospitals so we partner with businesses to offer other programs in a university, a bank, a retirement centre and the sheriff’s office.

I called our chief financial officer and I asked how much money do we make by serving people with developmental disabilities? I learned it’s a substantial part of our revenue.

Then I called our head education officer and asked how many training programs we had. It’s over 60, but not a single one is about training people with disabilities.

I checked with HR and learned we hadn’t intentionally hired a person with an intellectual disability to do any of our jobs. We had lots of volunteers who had developmental disabilities but no employees. It didn’t seem right.

I had some open jobs and I was willing to see if a person with a disability could do them. I invited the head of special education from our school district and someone from our county board of developmental disability to visit with an idea of starting a training program.

BLOOM: You’ve said children with disabilities who receive services at the hospital deserve to see staff with disabilities working there.

Erin Riehle: I think if we’re going to make a lot of money by providing their medical care and our mission statement is to ‘change the outcome,’ then for people with disabilities we should be training and hiring them just as we train and hire other people.

30 ~ BLOOM ~ fall ~ 2014

BLOOM: And the program has been modelled around the world?

Erin Riehle: Today we have about 285 programs.

About 250 of them are in the U.S. and the other 35 are in England, Ireland, Scotland, Canada and Australia. Overall we serve about 2,750 young people a year and 69 per cent go on to get jobs. Every day we get interest from other cities and countries who want us to teach them how to replicate our model.

BLOOM: How old are Project Search students?

Erin Riehle: We have two versions of the program. In one, we partner with local high schools, so it’s a high-school transition program and those students are aged 18 to 21. But we also run the same program as an adult model and typically those students are aged 18 to 30.

BLOOM: In your video there’s a participant who sterilizes surgical trays. Can you explain what her day would look like?

BLOOM: How does the program work?

Erin Riehle: The students are here for a school year of nine months. We break it into three 12week rotations, and each young person goes to a department by themselves, depending on what they’re interested in, and they begin to learn skills, not jobs. We might teach a skill using a video, or doing a picture board and being there with the student until they’ve mastered it. We took all of the manuals used by departments for orienting staff and added pictures to them, because many of our students don’t read or write. So anyone who gets trained in that department, whether or not they have a disability, uses the same books. It’s one of many examples of a modification made to help a person with a disability that helps everyone.

BLOOM: What are some of the jobs students learn?

Erin Riehle: Hospitals are a microcosm of the working world and anything you want to learn you can do in the hospital and then take back out into the community. We have people doing sterilizing of the trays used in surgery, stocking all of the materials used in patient rooms and departments, and transporting patients. We even have a guy who works in pathology in the morgue, changing chemicals in tanks and doing tissue slides. In general, we find people with intellectual disabilities tend to excel at jobs that are very hard, very complex, but also routine.

Erin Riehle: That’s Jill. She comes in, puts on her scrubs and safety gear and goes to her station, just like everyone else in that department.

She has to do at least 30 trays a day, and each tray has 100 to 200 instruments that have to be put in the exact order used by the surgeon, from first to last. I’ll be honest with you, if Jill had left high school without any skills and applied for that position without knowing how to do it, there’s no way in the world she ever would have gotten that job. But if we bring her in while she’s still a high school student and have nine months to teach her the parts of a skill, she can do it as well as anyone else.

BLOOM: If the student is eventually hired, do they make minimum wage?

Eric Riehle: They have the same job description and make the same salary as anyone else doing that work.

BLOOM: What is the program’s greatest challenge?

Erin Riehle: At Cincinnati Children’s and at every other business site we have several partners who work together to make the program happen. This includes the school district; a community rehab agency; Vocational Rehabilitation, which is a federally-run funding program; and an agency for people with developmental disabilities.

The biggest challenge is getting the partners to work together. We require the teams to braid their funding and expertise and resources.

We prescribe the role that each will play. But even though they all have the same goal of helping people with disabilities find jobs, they have their own bureaucracies with their own rules and measures of success.

BLOOM ~ fall ~ 2014 ~ 31

trailblazer

BLOOM: What kind of impact have you seen on Project Search graduates?

Erin Riehle: To get up every morning and come in to a workplace and have a purpose and be responsible for something that is not just made-up work, that if you don’t do it it’s going to have a ripple effect, these are powerful things. It is life changing.

We have at least eight folks here at Cincinnati Children’s that have gone on to get married.

We have a ton of people who, because of their paycheque, are living on their own and have bought a condo or are living with someone they work with. We have lots of folks spending money and paying taxes and they have friends.

BLOOM: What is the impact on staff?

Erin Riehle: It’s massive. It changes the minds and hearts of doctors and nurses. Instead of a doctor seeing every kid with cerebral palsy as a person that just needs to be seen, he or she starts thinking ‘This kid really could work. I need to make sure I link him up with the right services.’

At least once a week we get a call from a nurse on a unit who says ‘I’ve got a patient up here and I talked to the parents about Project Search and they’ve never heard of it. Can I send them to you to talk?’

So nurses, instead of seeing kids with disabilities as patients, and impersonal objects, they begin to see every kid with a disability as a person who could work, as a valuable person.

It really changes the whole care experience of patients with disabilities and their families.

BLOOM: Are you funded federally?

Erin Riehle: We don’t get any federal funding. I still work for the hospital and we have a team of people who go out to set up programs. The way we get funding when a group wants to start a program is that they sign a license agreeing to our rules and outcomes, and they pay for technical assistance to replicate the program. We charge $15,000 per site, which covers all of our expenses and salaries and time going in to work with teams.

Look how far we’ve come In 1996, Sheila Jarvis, president and CEO of Holland Bloorview, led a merger of two small children’s hospitals to grow a one-ofa-kind teaching hospital that put childhood disability on the world stage. This year Sheila is stepping down. Over 18 years, she’s achieved an innovative agenda to marry research, teaching and learning with care, and ground it in partnership with families. On behalf of all BLOOM readers, I’d like to thank Sheila for her one-of-a-kind leadership!

32 ~ BLOOM ~ fall ~ 2014

researchhits

Science

roundup Peer-led groups treat stress, depression in moms of kids with autism Parent-led groups in mindfulness meditation and cognitive exercises like practising gratitude significantly reduce stress, depression and anxiety in mothers of kids with developmental disabilities like autism, according to a study in Pediatrics.

‘Lifetime’ homes may best serve youth with profound disabilities Age is an arbitrary criterion for moving youth with profound disabilities from pediatric to adult long-term care, say Holland Bloorview researchers in a BMC Medicine article. Stability and long-term relationships in a ‘lifetime home’ may be more important to youth whose activities may not change in adulthood.

Kids with low IQ can learn to read with ongoing help Students with intellectual disability or low IQ learned to read at a Grade 1 level or higher with small-group study of 40 to 50 minutes a day for four years, according to a study published in Exceptional Children.

Disability doubles chance of bullying for children Seven-year-old children with disabilities are twice as likely to be persistently bullied as their peers according to a study published by London University’s Institute of Education. In addition, 15-year-olds with disability are more likely to be victims of threats, violence, name-calling or exclusion.

BLOOM~ ~fall fall~ ~2014 2014~ ~3333 BLOOM

Free to move, free to learn

By Louise Kinross

For three months researcher Coralee McLaren watched 20 kindergarten children play in the Bloorview School—some with disabilities and some without—to study the relationship between how they moved and their physical environment.

Recent brain research shows that when children are free to move naturally they interact with objects and features of their environment in a way that promotes learning.

But what does this mean for children with disabilities whose mobility is restricted?

“What we discovered was that not only do the physical features of the class elicit creative ways of moving, but movement itself, and the children’s interactions and how they move together, generate new ways of moving,” says Coralee, a professional dancer who was studying the children for her PhD thesis in

34 ~ BLOOM ~ fall ~ 2014

nursing. “By watching the other children move, or being caught up in the physical energy of their movement, the children with disabilities were drawn into different groupings and found non-habitual ways of moving where they experimented with their bodies.”

Even when children aren’t moving, research suggests that watching peers at play can trigger brain responses similar to those activated when children are playing themselves.

The findings could have implications for how classrooms are designed and provide additional evidence for the benefits of inclusive education.

Coralee, who watched and filmed the kindergarten children’s unguided play and interviewed them about it, was fascinated by how the children used objects to change the way they moved and their environment.

researchhits

For example, they modified a pretend cockpit chair in a mock space station set up by teacher Paul Alcamo.

“It was a scooped chair with a base that was detachable to give you the feeling you’re flying in a rocket,” Coralee says. “When they discovered they could take the chair apart they turned it into all sorts of things. They’d get rid of the base and make a teeter totter and hook up levers and straps, and they’d tip the seat like it was a swivel chair, and they’d use the base to climb over and around. Some of the children that used wheelchairs and walkers abandoned them and crawled, using the floor and the shelves to propel themselves around the space, to integrate with their peers and experiment with the chair.”

‘What we discovered was that not only do the physical features of the class elicit creative ways of moving, but movement itself, and the children’s interactions and how they move together, generate new ways of moving.’

Illustration by Jana Osterman.

In addition to the pretend centre, Coralee looked at how other physical elements of the class—the chairs, the space between tables, the pathway that connects two sides of the class and the wheelchairs and walkers themselves—generated movement.

“I asked one little non-disabled boy ‘If you had a choice to move any way that you wanted to in the class, how would you move?’ He said he wanted a wheelchair like his friend because he can move so fast and I can’t move that fast. The chair became a non-issue because it was the speed and capability of his friend that the boy found remarkable.”

Coralee and scientist Barbara Gibson just received funding from the Canadian Institutes of Health Research to co-lead an interdisciplinary team of researchers on a three-year study that will use artistic and scientific methods to build on this doctoral research. Coralee is now a post-doctoral fellow at the Bloorview Research Institute, housed at Holland Bloorview.

In the first year of the Moving Together study, researchers will develop a dance-play event that integrates objects and choreographed movements to try to elicit some of the creative encounters Coralee observed in Bloorview’s reverse-integration kindergarten. Children’s muscle and brain responses will be tracked.

In the second year, children at a school for physical disability will participate in this dance event with peers without disability.

In the third year, the dance-play event will be performed by children with diverse abilities in an immersive live theatre lab at McMaster University in Hamilton, Ont. “We’ll measure neurologically and physiologically what’s happening with children when they’re moving in this space in an artistic way, and we’ll also measure the responses of the audience.”

Coralee says the findings could inform how integrated classrooms, hospitals and medical clinics are designed. “We want to tease out this social piece of how movement itself incites movement. What is it about children moving together that starts to change their movement? How do children with disabilities start to move differently simply by being integrated and moving with their peers?”

BLOOM ~ fall ~ 2014 ~ 35

Help us Bloom!

Donate now and your gift will be matched.

Help us BLOOM into a larger community by reaching more families, with more information, inspiration and support.

Canadian parents and BLOOM champions David and Lynn Coriat challenge you to help us create a larger community so more families can benefit from the shared experiences, inspiration and support.

Make your donation by December 31, 2014 to support BLOOM and the Coriat family will match it, doubling your contribution!* * The Coriats will match any donation to a maximum of $50,000.

To make an immediate gift online, please visit our secure website at: http://hollandbloorview.ca/BLOOM Holland Bloorview Kids Rehabilitation Hospital: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.hollandbloorview.ca

7012253

36 ~ BLOOM ~ fall ~ 2014