BLOOM magazine - Spring 2015

SPRING 2015

AROUND THE WORLD

Polish parents of a seriously ill newborn make a film as ‘therapy’ TRAILBLAZER

PARENT TALK

Designer calls for brandname clothes that work for kids with disabilities

EMBRACING THE NEW A mom lets go of the disability beliefs she grew up with in Nigeria

CARE NOTES

Portal gives clients online access to health records

SPRING 2015

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 will only be produced online in future.

CONTRIBUTORS PUBLISHED BY: Holland Bloorview Kids Rehabilitation Hospital WRITER AND EDITOR: Louise Kinross DESIGNER: Sara Purves, Rubine Red Inc. PRINTER: Continental Press HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL Holland Bloorview is Canada’s largest children’s rehabilitation hospital focused on improving the lives of kids with disabilities. Holland Bloorview is a global leader in applied research, teaching and learning, and client and family centred care. We are a provincial resource transforming care for children with cerebral palsy, acquired brain injury including concussion, muscular dystrophy, amputation, epilepsy, spina bifida, arthritis, cleft-lip and palate, autism and other physical and developmental disabilities. Our vision is to create a world of possibility for kids with disability.

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

CONTACT US EMAIL: lkinross@hollandbloorview.ca TEL: 416-424-3866 or 800-363-2440 FAX: 416-425-9332 WARMLINE: 1-877-463-0365 MAIL: Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto, ON M4G 1R8 BLOG: www.hollandbloorview.ca/bloom

Parent Talk Share information and support with other parents at Holland Bloorview. Regular groups for parents of kids with autism, cerebral palsy and other disabilities, as well as parents of inpatients.

Family Education Workshops on topics like preparing your child for university, sibling issues, planning early for a meaningful life and understanding the adult system. * Advance registration required for Parent Talk and Family Education events. Go to hollandbloorview.ca, click on Client and Family Resources, then Workshops and Events.

Bookshelf Beyond The Pale, Emily Urquhart, 2015 Folklorist Emily Urquhart writes about raising a daughter with albinism and how cultures explain genetic difference through stories.

Laughing At My Nightmare, Shane Burcaw, 2014 From awkward handshakes to having a girlfriend, Shane Burcaw—who has spinal muscular atrophy and uses a wheelchair—always finds the humour in life.

My Three Best Friends and Me, Zulay, Cari Best, 2015 This picture book weaves in disability and racial diversity.

“The dots feel like goose bumps” says a student as she types her name on her friend Zulay’s braille machine.

Parenting Through The Storm, Ann Douglas, 2015 A parenting expert draws on her experience raising kids with depression, ADHD and Asperger’s to offer tips on how to support your child and maintain your own health.

Podcasts Disabled Girls Talk Two young women with disabilities—one visible, one invisible—talk about disability and friendship. disabledgirlstalk.tumblr.com

inthisissue

FEATURES AROUND THE WORLD 06 Once thought ‘too retarded’ to crayon, Judith Scott now acclaimed in art world 12 How a baby went from ‘an alien creature’ to ‘our son’ PARENT TALK 16 A new son, a new path CARE NOTES 19 Connect2care puts your child’s health records at your fingertips 20 Want to know what kids think? Just ask STAFF STORIES 23 Julia knows firsthand that every family is unique ROLE MODEL 26 A doll like me TRAILBLAZER 28 Every kid deserves a pair of jeans 32 Red, green or blue? Every store wants one RESEARCH HITS 34 Slip slidin’ away 35 Science roundup

DEPARTMENTS RESOURCES 02 Parent support, books FROM THE EDITOR 04 A different kind of entrepreneur FEEDBACK 05 Your letters and comments

On the cover Joel Abiola, 7, is tickled by his twin brother Jonathan.

Joel’s mother Shalewa says Joel’s complex disabilities have changed her life. Once a business owner with no knowledge of disability, she’s about to graduate from school as a social worker committed to advocating for families of kids with special needs. See p. 16. Photo by William Suarez.

BLOOM ~ spring ~ 2015 ~ 3

fromtheeditor

A different kind of entrepreneur

By Louise Kinross

Canadian humanist Jean Vanier is the 2015 winner of the Templeton Prize, a $2.1-million award for his work bringing adults with and without intellectual disabilities together to live and work as peers in 147 L’Arche communities around the world.

The Templeton Prize, established by the late American financier and philanthropist John Templeton, recognizes “entrepreneurs of the spirit”—people who address the “timeless spiritual dilemmas of human life through openminded humility in asking and seeking innovative answers to questions of substance and meaning and the challenging of assumptions.” Previous winners include Desmond Tutu and the Dalai Lama.

In this issue of BLOOM, you’ll meet others who are working to unite people by acknowledging the value and dignity of each individual. There’s Luke Anderson (p. 32), who’s opening up Toronto by placing an accessible ramp in front of every single-stepped storefront and café. Designer Mindy Scheier in New Jersey (p. 28) is pushing major fashion labels to adapt clothes for children with disabilities. And 11-year-old Melissa Shang (p. 26) of Philadelphia got over 150,000 people to sign a petition asking American Girl to release a doll with a disability. They declined, so she’s writing a book based on her own story. “I want [readers] to know I’m just like them,” she says.

Let’s salute them all.

In his acceptance speech, Jean called for today’s “culture of winning” to be transformed. “A terrible rift is created between winners and losers, between the so-called normal and the so-called abnormal, between the rich and the poor.”

We couldn’t BLOOM without you!

Thank you to more than 50 donors who contributed to BLOOM last fall. We are grateful for the generous contributions you made. As you know, your gift was matched by David and Lynn Coriat, doubling its impact. Thank you for helping us reach families and professionals in over 160 countries.

The Char family committed last fall to raise $10,000 for BLOOM. Please support them in their efforts by making an online donation at hollandbloorview.ca/char.

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feedback

FROM THE MAGAZINE, E-LETTER & BLOG I have a friend who has a medically fragile young daughter (Why your kid’s sniffles make me sweat, Jan. 28). They too, struggle with viruses and germs floating around. When the time came for kindergarten, the school provided a robot that streams the classroom to their home. It was relatively easy to set up, their daughter has become friends with kids in the classroom, she works along with other kids, even on group projects, and has even visited the classroom under special conditions.

I would like to see the money unbundled from the agencies and direct funding given to families who are able to plan and develop solutions for their families (Community living looks beyond adult ‘group homes,' Nov. 11). We need to encourage innovative, outof-the-box solutions that connect with other community members and solutions that are [already] out there. Also, let’s stop thinking of solutions in a welfare mindset where we’re only offered options that continue our poverty.

Lisa Butler, online

Brenda Parris, online

My son is now nine and is missing a foot, some fingers on one hand, and below elbow on the other (Sadie at the salon, Oct. 30). We get questions every hour at best.

We go to the same food store every week, sometimes two times a week and get no less than 135 comments every time (questions and remarks only, not counting pointing or picture taking). I’m a statistician: I keep track. It used to make me mad, now we joke about it. Sad part is he often feels responsible for the kids who scream and cry in terror: over a missing arm!

Online

Thank you, Susan, for sharing what many of us feel and experience in our families (I am Nat’s ghostwriter, Dec. 31). Our daughter is 22 and only quite recently began to include her 26-year-old brother with severe disabilities in her life. Now, she Skypes and calls as often as she can. Throughout high school, though, she ignored him. In university once, she wept, saying “I resent him when you go running to him. I know he doesn’t deserve it, but I can’t help it.” In our family experience, it took adulthood and moving out of our home to forge the ties that bind between brother and sister.

'I’m tired of reading study after study, year after year, about how parents like us are at risk' (How many red flags on mental health do we need? Jan. 23). Oh, Lord— me too! What a waste of time and money to restate the obvious yet again, along with those pallid suggestions that always avoid the real bottom line: Ample financial resources for truly high quality support of all kinds, and ongoing research on how to make that ever more individualized, sensitive and creative.

Online

Donna Thomson, Ottawa

Connect with us online The BLOOM community of information, inspiration and support for parents raising children with disabilities is moving online.

This is our last print issue.

Please follow us on the blog at hollandbloorview.ca/bloom for more details.

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

Please note we edit comments for length.

BLOOM ~ spring ~ 2015 ~ 5

Once thought ‘too retarded’ to crayon, Judith Scott now acclaimed in art world

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aroundtheworld

By Louise Kinross

in 2016 by Beacon Press. For seven years, the girls lived together in a rural setting on the outskirts of Cincinnati where they were inseparable. At age seven, Judith was sent to an institution.

BLOOM: What was your early childhood with Judith like?

Judith Scott was a sculptor whose abstract pieces—combining fibre and found objects like an umbrella or bicycle wheel—show in galleries and museums around the world.

Photo by Ruth Fremson/The New York Times/Redux

Yet for more than 40 years, her talent lay dormant.

Judith, who died 10 years ago, had Down syndrome, was deaf and lived most of her life in an institution. Ironically she was deemed too “retarded” to draw with crayons while there.

Judith’s life changed at age 42 when her twin sister Joyce brought her to San Francisco and became her guardian.

Joyce enrolled Judith in Creative Growth—a community arts centre for people with disabilities where Judith found her passion.

Joyce Scott: It was idyllic in many ways. We had three older brothers who had their own lives and because we were twins, our parents made this giant sandbox for us where we’d be safe. We played together in this enclosure and had a lot of experiences with nature. Behind us were sheep pastures. It was a beautiful place to be children.

We slept together and as we got a little older we went around the neighbourhood and played with other children.

BLOOM: What kind of personality did Judith have?

Joyce Scott: She was very loving and outgoing and interested in everything. We didn’t know she was deaf, and what came to be seen as behaviour problems—not coming when someone called her or not being responsive—was related to her deafness. She was very involved in the physical world.

BLOOM: How did you communicate?

Joyce Scott: Through signals and touch and she had a few sounds. She understood signals that we developed naturally.

Joyce’s upcoming book EnTWINed: Secrets From The Silent World of Judith Scott will be published Photo (above) by Erik Butler

BLOOM ~ spring ~ 2015 ~ 7

aroundtheworld

BLOOM: How was her disability explained to you?

Joyce Scott: I don’t remember it being explained.

Our parents didn’t even know what Down syndrome was, or have a name for it. I don’t remember realizing she was different for quite a long time, until she started being excluded. I just thought she was Judy.

on the porch and a little one…fell off and her mother had this idea that Judy had pushed her, which was untrue. She said Judy couldn’t come over after that. Our mom carried Judy a lot and she developed back problems. Our parents met with a pastor and a doctor and were told ‘you need to put her in an institution.’ They were told it was bad for the other children for her to live at home.

BLOOM: Why was Judith sent to an institution?

BLOOM: What was it like when she left?

Joyce Scott: She was seen as being more difficult.

She’d figured out how to go to the back door where the screen door was locked and get on a chair and climb up and unlock it. She’d wander away and we’d call her and she wouldn’t respond.

We had a bad experience when Judy was maybe six where we were next door with a lot of children

Joyce Scott: It was absolutely horrendous for her and for me. I woke up and we slept in the same bed and she wasn’t there. I went looking for her and my mother said she was going to a special school where she would learn to talk. At first I thought she was coming back.

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aroundtheworld

BLOOM: Did you visit?

Joyce Scott: It was this horrendous state institution that was something out of Charles Dickens. Terrible. We went regularly for a while, and she came home the first summer, but then our father had a serious heart attack and he died a few years later and that sort of changed everything. Initially she was three hours away but when we were 10 she moved to another place that was further away. We would go, but not as frequently. Our mother had a nervous breakdown and was hospitalized. It was very hard on her.

She had a lot of guilt and shame about sending her away.

BLOOM: How did you decide to bring Judith to live with you?

Joyce Scott: I moved to California when I was 25 and I would go back to Ohio once a year to see Judy. Later on I was working as a critical care nurse to a family of a baby with medical problems. I became close with the family and went to meditation retreats with the mother.

One was a six-day silent retreat. I’ve always been very busy and it was the first time ever that I was quiet. Every day I went deeper inside. Around the fifth day I felt like I came to my heart, my centre.

I had this feeling that I was there with Judy and that our core was a central core that we shared.

It was like someone turning on the light in a dark room. It became clear to me: ‘What on earth is she doing in an institution 2,000 miles away when she could be with us?’

BLOOM: How did she adapt?

BLOOM: How did Judith influence you?

Joyce Scott: I’ve worked almost my whole career with children with disabilities and families. I was a pediatric nurse and a parent/infant specialist and I did home visiting with parents of babies and toddlers with disabilities. It was an incredibly satisfying and meaningful career for me. So much of what my life has been has been deeply influenced by Judy. When I first finished school at Ohio State I got a job teaching at the state institution where my sister had been sent.

Joyce Scott: She walked in the door like she’d come home and she went into the kitchen. There were dirty dishes and she looked at me and laughed and washed up the dishes and then she took her wet hands and wiped them down my body and laughed. She was always doing little tricks. She had a bedroom and she came in and took things out of her suitcase and rolled them up and put them in her dresser and put her shoes under the chair. She was completely at home— like she’d been waiting for me to realize she was supposed to be there. I had two daughters at the time and the 10-year-old became best friends

BLOOM ~ spring ~ 2015 ~ 9

aroundtheworld

with Judy. She lived with us for a while and then I found her a ‘board and care’ home nearby and she stayed there. We saw her every day and she’d come spend the weekend with us at our house in the country.

BLOOM: How did you find Creative Growth?

Joyce Scott: I was looking at different programs and not liking them. Some had cubicles and people would sit in them separating nuts and bolts. They were doing stupid, meaningless activities and it was isolating. I have a good friend who’s a psychologist and she told me about Creative Growth so I called and went to visit and fell in love with the place.

BLOOM: When did Judith first start to show potential?

Joyce Scott: For about two years they were introducing her to different materials. She didn’t like drawing, painting or ceramics. She would draw, but not even look at what she was drawing.

Eventually they began to think ‘Maybe this isn’t the right place for her.’ One day Judy was sitting at a table where a visiting artist was working with textiles. Judy took some threads and yarns and found some sticks on her own and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded. After that they gave her free rein to go to a materials room and pick out what she wanted. Once she started fibre sculpture, you could not get her to stop.

Sometimes her fingers would bleed because she worked so many hours and so hard on it.

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BLOOM: What did her art mean to her?

Joyce Scott: Without language, she couldn’t communicate her thoughts. Tom, the director of Creative Growth, felt she was finding her own language and finding a way to give voice to her feelings and her deep self. The sculptures are her way of telling her stories and speaking her truth.

When people are in the presence of them they often say they get this feeling of such intensity and spirit inside them. They feel they’re pulsing with this life force.

BLOOM: How did she feel about the recognition she got?

Joyce Scott: She was becoming well known in ‘outsider art’ and museum circles and people would come to see her. She would usually be quite gracious and shake their hand and then go back to work. It didn’t mean much to her. When she finished a piece she would rub her hands back and forth, as if to say ‘That’s it, it’s done, good job’ and then she would point to the staff person next to her and point upstairs to indicate that the person could take the piece away. Within five minutes she’d start on something else.

BLOOM: You mentioned she had a first show at Creative Growth?

Joyce Scott: Yes. With that first show they brought her into the room where there were pieces she hadn’t seen for months or years. The staff was hiding in the alcove. She went to each sculpture and either patted it or blew it a kiss or waved to it.

There wasn’t a dry eye. It was like she was greeting her long-lost children.

aroundtheworld

BLOOM: What advice would you give parents on how to best support siblings of kids with disabilities?

Joyce Scott: Often the focus is on the child with disability and the sibling assumes a caretaking role that is more dominant than is healthy for their own self-development. I think it’s important to encourage brothers and sisters (and mothers!) to stay in touch with their own wishes and dreams. I think it’s important for parents to have special time to really honour the other child.

BLOOM: Her talent could have easily remained hidden.

Joyce Scott: I feel so strongly that people who may look different or appear to be somehow ‘less than’ or who are labelled ‘less than,’ can and often do have great giftedness and great potential. I see Judy as a kind of a model for that. Who would have thought that someone labelled as profoundly retarded and deaf and institutionalized for most of her life had this amazing greatness within her as an artist?

What she needed was an opportunity, a place, and respect.

BLOOM ~ spring ~ 2015 ~ 11

How a baby went from

an alien creature’ to our son’

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aroundtheworld

By Louise Kinross

Our Curse tells the story of a Polish couple whose son Leo is born with a rare syndrome that prevents him from breathing while asleep. Without a ventilator, he will die. The film, by Leo’s dad Tomasz Śliwiński, was nominated for a 2015 Academy Award for Documentary Short. You can watch it in its entirety on The New York Times’ website. Leo’s syndrome is known as Ondine’s Curse (or Congenital Central Hypoventilation Syndrome, CCHS ). At The New York Times, Leo’s dad writes that “He evolved from a ‘curse’ (a term we took from the disorder’s name), an alien creature with lots of medical noisy equipment, into our truly beloved son, without whom we could no longer function.” We talked to Leo’s mother Magda.

Photos by Magda Hueckel

BLOOM: Did making the film help in your healing process?

Magda Hueckel: Yes, definitely. First of all, it was very important while we were shooting. It was a really dark period for us, and sometimes we had no strength at all. Leo was still in the hospital and after coming back home, all we could do was sit and stare at the wall. Nothing seemed important or worth any effort. But, once we decided to make the movie, we had to mobilize ourselves, take a camera and start shooting. It made us active. We felt that we were doing something creative.

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aroundtheworld

Photos by Magda Hueckel

BLOOM: Did health workers help you feel that you could cope with Leo’s medical needs?

Magda Hueckel: Unfortunately, the medical care was not perfect. Of course we have met many great nurses and doctors, who have been really involved, but in the beginning we felt very alone. All the knowledge we have, we had to seek from other families who deal with CCHS or from doctors that we reached out to.

BLOOM: There is a beautiful piece on your blog where you describe the horror of being in the NICU—the silence, except for parents sobbing.

What would have been helpful for parents like you?

Magda Hueckel: Psychology help in the NICU is absolutely necessary. I didn’t have any psychological care. One doctor told me that my life was over and Leo’s condition was a ‘life sentence.’ Another looked at me and said: 'One of you is going to have to give up your friends and professional life and sacrifice your life for your handicapped child.’ I will never forget those

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words, which I find cruel and false. Fortunately we had support from family and friends and managed to live as normally as possible. But I think some parents, being told this, might collapse. I went to a private psychologist twice. I needed to hear that my life is NOT over and that I still have the right to be myself and to do what I love and want to do.

BLOOM: How did you manage your stress and anxiety, especially when you first brought Leo home?

Magda Hueckel: The first year we hardly slept.

We were like zombies. I thought I would die of exhaustion. But we made a decision that we would do whatever we needed to do to not get frustrated. We decided that we had to find time to go out together as a couple and do things that we love. Leo needs parents who are happy. And we can’t allow him to feel guilty because of his disease. In my opinion it’s better to leave Leo with his grandparents or a beloved nurse from time to time, and go out together and then come back relaxed, than to be at home all the time and get tired. We also try to exercise regularly. Sometimes it’s difficult to even find an hour for jogging, but if we do manage it, it really helps.

' ' Photo by Tomasz ŚSliwinski

And then—watching the movie helped us accept the trauma that we went through, to cry it out, to finally put it in perspective, and start a new life.

It was the best therapy ever.

aroundtheworld BLOOM: What advice do you have for other parents of infants who have life-threatening illnesses, or complex medical needs? If you could give yourself as a new parent advice now, what would you say?

Magda Hueckel: I think that acceptance is the most important thing. If you can’t change something, you have to accept it. If you can change something, you have to find the power to fight. The most difficult thing is to distinguish the two. Never give up. Check out everything.

It is worth your effort. And never lose hope— medicine is developing and miracles happen. And try to enjoy your life as it is. Even if you cannot do many things and you have a lot of restrictions— you can choose other activities. There are millions of possibilities. For example, you can develop yourself in music—as a creator or as a perfect listener. You can be happy, you can enjoy your life, you can push yourself to grow.

BLOOM: How is Leo’s health now and what does he enjoy?

Magda Hueckel: He is four-years-old and he is a great guy. He loves travelling. He is starting to read and speak. He is really a happy boy. All his adventures are described on our blog—an English version is available at LeoBlog leoblog.pl/en/.

BLOOM: Are you and your husband filmmakers?

Magda Hueckel: My husband was in his first year of the Warsaw Film School when Leo was born and I am a photographer. This was our first movie that we made together.

BLOOM ~ spring ~ 2015 ~ 15

parenttalk

By Louise Kinross

When her twin boys were born, Shalewa Apata-Abiola was on top of the world.

he was constantly sick and in and out of hospital.

“All of our Christmases and holidays were spent in hospital. When Joel was awake all he did was cry.”

“I’d waited so long and reached my ultimate goal of being a mother,” says the Scarborough, Ont. resident. But discovering that her son Joel had cerebral palsy “crushed that.” Her first thought was that she wouldn’t be able to take her boys back to Nigeria, where she was raised.

At age five Joel had a g-tube placed and his health improved markedly.

“In Nigeria disability doesn’t exist. You don’t see kids with special needs. They’re either kept at home or they don’t belong to society. In some cultures they dump infants with disabilities in the river—they do away with them. Disability is viewed as a taboo, as something evil that brings shame on a family. It means the parents did something wrong.”

Shalewa says raising her son Joel—who has seizures, vision loss and complex needs—in Canada has changed her life. “I’ve gone from having no knowledge about disability and running my own business to returning to school full-time to become a social worker. I want to be an advocate for families of kids with special needs, not only in Canada, but to bring awareness in Nigeria.”

Shalewa says the journey with her son Joel, who is now seven, has been tough. From age two to five

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Shalewa says her approach to disability has evolved. “I made the mistake early on of wanting my child to get better, instead of letting him take the lead and meeting him where he was. I was all about taking Joel to appointments and therapies.

I never had any peace and I never enjoyed the little boy that God had given me. The moment I relaxed and decided Joel would take the lead things got better. I follow him and listen to him and whatever makes him happy is what I do— whether it’s taking him to his favourite places or spending time at home with his family. He has three brothers and adores listening to their voices. His father is his best buddy. Music lights up his life. My goal is to improve his quality of life.”

Shalewa says Joel has a deep bond with his twin brother. “Jonathan will whisper something to him and Joel will laugh so hard. When I ask ‘What are you saying?’ Jonathan says ‘It’s a twin thing.’”

Shalewa says it’s important for immigrant moms raising children with disabilities to let go of the beliefs about disability they may have grown

Photos by William Suarez

A new son, a new path

parenttalk

BLOOM ~ spring ~ 2015 ~ 17

parenttalk

up with. “I tell people to forget the images you have from back home because if you don’t block them off they will hold you back. Love your child for who he is. There’s a reason you’ve come to Canada and have your child here. If I was in Nigeria, Joel would not be alive today.”

Shalewa encourages moms to “reach out for support and don’t think you can do it all yourself.

You cannot. Surround yourself with positive people who encourage you to push forward and tell you you’re going to be okay.”

Shalewa says a big influence in her life is Holland Bloorview social worker Barbara Germon. “She was a huge part of me going back to school.”

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“Having a child with complex needs was not easy but Shalewa was willing to look at different ways to understand her journey and in doing so was able to stay true to her hopes and dreams,” Barbara Germon says.

Other ways Shalewa tries to take care of herself and re-energize include writing in a journal, listening to music, and travelling.

“I’m a person of faith and when I wake up I say ‘God give me the strength to take care of Joel and give me the heart to love him’ because those are the two things he needs. It’s not easy taking care of him but Joel has been a blessing. He’s a blessed child.”

carenotes

Connect2care puts your child’s health records at your fingertips

By Louise Kinross

Becky Quinlan can’t say enough about the benefits of Connect2care—a new secure portal that gives parents and kids access to their health records at Holland Bloorview.

phone tag to get an answer. I’d phone and talk to the nurse, and the nurse has to talk to the doctor, but some of the specialists aren’t at the hospital every day. With two-way messaging I’ll be able to type my question in and wait for a direct response.”

“My son Jack is pretty complex and seen in seven different departments,” Becky explains. “Now I can go online to see a list of all of his appointments Becky is a family-centred care specialist at Holland and what’s pending, and it keeps me more Bloorview who’s helping to sign families up for the organized.” service. “I think it empowers us as patients and families to have our information at our fingertips.”

She also loves having Jack’s clinical reports at her fingertips. “Before I’d take a ton of notes at Connect2care was developed based on feedback every appointment but now I can access that from parents and clients and is part of a research information in real time. I can also print out study at the Bloorview Research Institute to see reports and take them with me to show other how it can be improved over time. specialists.”

To get registered for Connect2care, visit Holland Holland Bloorview is one of the first children’s Bloorview Monday to Friday between 9 a.m. hospitals in North America to offer an online and 3 p.m. You’ll need to bring your child’s OHIP portal to families. card and two pieces of identification. You can e-mail connect2care@hollandbloorview.ca with Becky is excited about new features that will be any questions or visit hollandbloorview.ca/ added soon. These include access to lab and connect2care. microbiology results and two-way messaging with clinicians. “In the past when I had a simple question it might result in a couple of weeks of

BLOOM ~ spring ~ 2015 ~ 19

Want to know what kids think?

Just ask

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carenotes

By Louise Kinross

Tommy and Martin Tobon are nine-year-old twins.

Martin likes building Legos. Tommy prefers to swim. But he doesn’t like wearing goggles because “fish don’t wear goggles.”

The boys are just as specific about what they like and don’t like about Holland Bloorview, Canada’s largest children’s rehabilitation hospital.

“I don’t like the way they put the basketball hoop in the gym,” Tommy says. He speaks softly and with effort due to his cerebral palsy. “The hoop in the gym is too high.”

“That’s right,” Martin says. “He wants different sizes for different kids who can’t shoot that high.”

Tommy also found the water table in the Ronald McDonald Playroom didn’t work for him. Because he uses a wheelchair, he couldn’t get up close enough to play.

Photos by William Suarez

The boys shared their ideas as part of the hospital’s children’s advisory council and say they’re pleased with the changes they’ve seen.

For example, there’s a new water table in the playroom that’s accessible so Tommy can wheel under it and play at his height. “We also wanted a place to hear music by ourselves or play games or on the iPad” Martin says, and voila—there’s now a dedicated space for these activities called the teen corner.

The group of 20 child advisors, which includes patients and their siblings, is led by Daniel Scott,

Holland Bloorview’s outpatient playroom coordinator.

“It’s so important for kids to know their voice matters,” Daniel says. “We want to give them opportunities to give feedback in ways that are meaningful to them and to the hospital. Children with disabilities may be marginalized, so if engaging them in a council helps them become their own advocate that’s an incredible life skill.”

When Daniel launched the children’s advisory three years ago he couldn’t find one targeted to young children. Most hospitals, like Holland Bloorview, had a youth advisory, but participants had to be 13 or older. “The age range we see in a pediatric hospital is broad and to leave children under the age of 13 out of the change process is such a missed opportunity,” he says. “These are children who have been in the system for a while, are here on a regular basis and know it well.”

Holland Bloorview’s children’s advisory council is open to kids aged three to 13, but some children choose to stay on longer.

The group meets on a project basis to consult with hospital and external programs looking for input from this age group.

Its first event was a brainstorm—over pizza—on how to improve the Ronald McDonald Playroom, a supervised “play zone” for clients and their brothers and sisters. Some kids filled out a survey or shared ideas verbally. Others were observed playing to see what toys and activities they gravitated towards. Kids could also browse a catalogue of adapted toys and stick a post-it

BLOOM ~ spring ~ 2015 ~ 21

carenotes

note on items they’d like to see in the playroom.

“The toy catalogue captured data from kids who weren’t as verbal or who are shy,” Daniel says.

“We ended up making a lot of changes, from creating a teen corner, to bringing in materials that made the room more accessible—like a large ramp and stairs to our ball pit so kids could get in and out independently—and getting a wheelchair accessible art easel and sensory table.

We also lowered the level of shelving and made it open and at eye level for kids.”

Another event involved having kids try the food served on our inpatient units. This seemed a great idea since kids can be picky eaters. “The food tasted great, but when it was first put in front of them, it wasn’t presented in a kid-friendly way,” Daniel says. “For example, one of the children said that the meatballs looked like brains.”

Another client who’s lived for many years on our complex-continuing-care unit suggested the food was too bland. As a result, seasonings are now available in the kitchens. “These kids have a lot of their lives dictated to them, so providing as much choice as possible is a great relief,” Daniel said.

As a way to build the relationship between food services staff and inpatient families, a new Kids In The Kitchen program invites kids to come make their own pizzas, cupcakes or cookies.

They’ve also been consulted on the accessibility of video games. Scientists in the Bloorview Research Institute want to know if therapeutic games they’re developing are easy to use and fun, so Martin and Tommy and friends came out for a night of game playing (in the photo they’re with scientist Elaine Biddiss, right, and their mom Andrea, left).

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“Daniel is really good at making the sessions fun—with snacks and activities—and getting their ideas,” says Andrea Davila, Martin and Tommy’s mom.

Last year the group was invited to a patient experience conference to describe its role to about 350 people. Tommy and Martin sat on stage with other advisory members and answered questions from the audience.

“This is teaching them skills they’d never learn at school at this age, like being able to talk in front of so many people,” Andrea says. “They’re learning to be advocates for themselves, but also to see a bigger picture that benefits other children. I notice they have more confidence when they speak to regular people on the street. And I know they raise their voice a little bit more—especially Tommy because sometimes people can’t hear him. That’s something we practise.”

To get involved in the children’s advisory, call Daniel at 416-425-6220, ext. 3438.

staffstories

Julia knows firsthand that

every family is unique MEET JULIA HANIGSBERG, THE NEW PRESIDENT AND CEO OF HOLLAND BLOORVIEW (IN PHOTO WITH DAUGHTER RACHEL). JULIA COMES TO US FROM RYERSON UNIVERSITY, WHERE SHE WAS VICE-PRESIDENT OF ADMINISTRATION AND FINANCE. SHE’S A LAWYER WHO SPENT 10 YEARS IN THE PROVINCIAL GOVERNMENT WORKING ON POLICY AND LEGISLATION. HERE SHE TELLS US MORE ABOUT HER OWN FAMILY’S EXPERIENCE WITH DISABILITY AND HOW SHE’S LEARNING ABOUT THE HOSPITAL 'FROM THE GROUND UP.'

By Louise Kinross

BLOOM ~ spring ~ 2015 ~ 23

BLOOM: What does your experience as a parent of a child with disability add to your role here?

children change. The world in which we operate is not a ‘one-size-fits-all’ world.

Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance— is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.

Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work.

She loves to shop, so she thinks working in stores will be lots of fun.

BLOOM: Can you tell us a bit about your daughter?

Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our

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BLOOM: What’s been the greatest challenge parenting Rachel?

Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when.

Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.

The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the

staffstories

Photo by William Suarez

heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.

I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.

I’m also very well aware of the privileges I have.

English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.

BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems.

What strategies have you used in your own life to take care of yourself?

Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves.

Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.

A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away

for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-yearold twins. So it’s building resilience for the whole family.

BLOOM: How can the hospital best support parents so they feel able to advocate for their child?

Julia Hanigsberg: I’ve been really impressed with our Family Leadership program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom.

We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.

BLOOM: What would you like our parents to know about your plans for the hospital?

Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.

You can follow Julia Hanigsberg on Twitter @Hanigsberg or on her blog: https:// hollandbloorview.wordpress.com/

BLOOM ~ spring ~ 2015 ~ 25

rolemodel

me

A doll like

By Louise Kinross

Last year Melissa Shang, then 10, and her sister Eva got almost 150,000 people to sign a petition asking American Girl to release a doll with a disability. While the company has disability accessories like hearing aids for its regular dolls, they haven’t brought out a doll whose storyline includes a disability. American Girl declined, so Melissa, who has a form of muscular dystrophy and lives in Philadelphia, is moving on to write a book.

BLOOM: Why did you start the petition to get American Girl to release a doll with a disability?

Melissa Shang: I started the petition because I felt modern girls can relate to American Girl dolls and there’s never been a story about an American Girl with a disability. I wanted people to see what it’s like to have a disability.

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BLOOM: Why is it important for kids with disabilities to see themselves in dolls or books?

Melissa Shang: I take out four books from the library every week and I like to read about all sorts of people. But I never get to read about any kid that has a disability. It’s getting very hard to relate to books because it feels like I’m the only girl with a disability. And I don’t want another book where I’m just the side character who teaches the main character a lesson about being kind. I want readers to know what it’s like to be me.

BLOOM: Are you the only student with a disability in your class?

Melissa Shang: I’m the only student that’s in a wheelchair.

rolemodel BLOOM: Eva, how did you and Melissa get almost 150,000 people to sign your petition?

BLOOM: What has been the greatest challenge of your disability?

Eva Shang: I promoted it on Facebook and my own networks but what helped the most was that I’d worked with someone at the Huffington Post and once their news story came out there was other media coverage. Then it went viral. Because it came from a deep place in Melissa’s heart, it hit close to home for many people who have experience with disability or have worked with kids with disability.

Melissa Shang: I think it’s that as I get older I’m going to lose some of the skills I have.

BLOOM: Did American Girl respond to you?

Melissa Shang: I hope my book will be very popular and many people will be able to read it.

I also hope to be a singer or a music teacher.

Eva Shang: They said it’s their company policy to not promise any dolls in the future.

BLOOM: I’m surprised because it seems they’re missing out on a great opportunity. Why did you decide to write a book Melissa?

Melissa Shang: I love American Girl, but right now I want to make sure that the story of a disabled girl gets out there. American Girl is working way too slowly. We decided on a chapter book because American Girl books are chapter books and we want ours to be sort of the same style.

BLOOM: How do you cope with that?

Melissa Shang: I focus on being happy and enjoying the stuff that I can do.

BLOOM: What would you like to do in the future?

Update: The Martin Literary Management agency is representing the Shangs and a book is expected by the end of the year. You can follow the sisters on Twitter @shang_melissa and @eva_shang.

Or watch their TEDx talk called Why girls with disabilities matter.

BLOOM: Is the book based on your story?

Melissa Shang: The character is based on me.

Her name is Mia Lee and it’s about how she wants to fit into middle school but it’s hard because she has a disability. She always sees the other students hanging out at their lockers but she’s stuck in the handicapped elevator with her aide.

BLOOM: What do you hope kids get out of the book?

Melissa Shang: I hope they learn how it feels to be in a wheelchair and how it feels to be such an outsider in middle school. Most importantly, I want them to know I’m just like them.

BLOOM ~ spring ~ 2015 ~ 27

trailblazer

Every kid deserves a pair of jeans

28 ~ BLOOM ~ spring ~ 2015

trailblazer

By Megan Jones

IN THE SUMMER OF 2013, MINDY SCHEIER WAS FACED WITH A PROBLEM. HER SON OLIVER, THEN NINE, WANTED TO WEAR JEANS TO SCHOOL. OLIVER, WHO HAS A RARE FORM OF MUSCULAR DYSTROPHY, HAS TROUBLE USING BUTTONS AND ZIPPERS. HE ALSO WEARS LEG BRACES, WHICH DON’T FIT EASILY UNDER RESTRICTIVE FABRICS LIKE DENIM. Mindy, who lives in Livingston, N.J., had a choice: she either had to tell her son he couldn’t wear the clothing he wanted, or send him to school without leg braces and risk that he might not be able to use the bathroom by himself.

“It was terrible,” she says. “I felt like I just didn’t know what the right thing to do was. Oliver views himself as a typical [child]. So he was completely confused as to why it was even a question whether he could wear jeans or not.”

In the end, Mindy let her son wear what he wanted. But the worry she felt as she sent him to school got her thinking about how limiting mainstream clothing was for children with disabilities. A fashion designer by trade, Mindy had adapted some of Oliver’s clothing in the past so that he could wear it comfortably. But the mom of three wondered how parents who didn’t have the sewing skills to modify off-theshelf clothing managed to dress their kids with disabilities.

Then Mindy had a brainwave. Instead of thinking it was her responsibility as a parent to modify clothes that already existed, why didn’t she insist that companies create children’s wear that was adaptable in the first place?

With that idea, Mindy, who in the past has worked for big names like Saks Fifth Avenue and Macy’s, decided to combine the two things she knew intimately about: clothing and disability.

Within a few months, she launched Runway of Dreams, a not-for-profit that aims to convince larger mainstream labels to produce adapted versions of current, fashionable clothes for children with disabilities. The company’s philosophy is simple: Kids deserve to wear whatever they want to wear. And it’s time for the fashion industry to step up and help them do it.

BLOOM ~ spring ~ 2015 ~ 29

trailblazer

“We have plus-sized departments and petite departments and maternity departments,” Mindy says. “And we have nothing for the differently abled community? It is so mind-boggling that this has not been done yet.”

Runway of Dreams isn’t the first company aimed at the creation of clothes designed specifically for kids with special needs. Other adapted clothing options do exist, but they’re limited, often expensive and seldom trendy. Mindy hopes her project will ultimately give more people easy access to affordable clothes kids will actually want to wear.

Since she came up with the idea a year-and-ahalf ago, Mindy has reached out to others to get a better sense of the range of clothing needs kids

30 ~ BLOOM ~ spring ~ 2015

with disabilities have. She started with a large Facebook survey, which received answers from parents and children all over the world.

The survey revealed that people with disabilities struggled with three main things when it came to dressing themselves. The first was fasteners: buttons, snaps and zippers seemed to be a problem for nearly everyone across the board.

The second was the way clothing needed to be put on—kids with cerebral palsy or muscular dystrophy, for example, have low muscle tone, and can’t easily lift a sweater above their heads.

The final issue was the ability to adjust the garment to fit—especially important for those with differently shaped bodies, and those with equipment like leg or back braces.

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Using this information, Mindy designed a few prototypes and tested them with a group of highschool students and their parents at a school.

She partnered with Maura Horton, a Raleigh, N.C.-area woman whose company MagnaReady produces washable magnets that can be used in clothing.

They modified pieces with magnets—like a dress-shirt that opens along the back, allowing the wearer to slip their arms inside, and fastens easily.

“It was one thing to talk to people but another to have them judge, feel, see the modifications that were made,” Mindy says.

Participants’ reactions confirmed for Mindy that Runway of Dreams was an important project.

One boy with muscular dystrophy travelled an hour-and-a-half just to participate in the group.

He told Mindy that he’d recently been accepted to Harvard, and that what he wanted most for his first day of university was to wear jeans like a typical freshman.

“Being able to wear what you want brings you personal confidence,” Mindy says.

“Forget about the feel good aspect of it. There is a huge population of people out there that are ready and waiting for something like this to happen. They’ll spend their money on it,” she says.

One day creating accessible clothing will be mandated, she says, and all companies will have to make a percentage of their clothing adaptable.

Until then, she’s pushing them to get involved.

“As a mother, whether your kid has a disability or not, you know how hard it is not to have your child feel good about themselves,” she says. “I’m asking everybody to spread the word because we can make this happen together.” At the very least, Mindy’s project has left her son hopeful.

“Oliver and I were just interviewed on CNN,” Mindy says. “He ended the interview by saying, ‘I told my mum how lucky she is that I was born with muscular dystrophy. Because we wouldn’t be where we are right now if I didn’t have it!’”

To learn more about Runway of Dreams, or to become involved in the movement, visit the website at www.runwayofdreams.net.

“Differently abled kids are constantly being told, ‘You can’t play that,’ or ‘You can’t wear that.’ I think it will resonate that someone is saying, ‘You know what? You can actually. We’re going to make it happen.’”

So far, Runway of Dreams is in talks with one large clothing company, which Mindy hopes will lead to an official partnership. She’s also reaching out to other designers and manufacturers. Since adaptable clothing caters to such an underserved market, she believes it’s in companies’ best interests to get involved.

BLOOM ~ spring ~ 2015 ~ 31

Red, green or blue Every store wants one

By Louise Kinross

When Luke Anderson graduated as a civil engineer in 2002 he moved from Ontario to British Columbia to pursue his passion: mountain biking. “I was in Rossland, the most coveted mountain-biking area of Canada,” Luke says. “It was a dream come true to live there among like-minded people and be part of that scene.”

But in the fall of that year Luke’s life changed forever when he rode off a platform to jump a 25-foot gap and came up short. “I crashed hard, flew over the handlebars, landed head first, broke two vertebrae in my upper spine, and left my life as I knew it,” he says. He was able to talk his friend—who’d been filming his jump—through

32 ~ BLOOM ~ spring ~ 2015

a 911 call and was airlifted to Vancouver General Hospital. After an eight-hour surgery, five weeks in intensive care and five months in rehab, “I was introduced to a world that’s not well suited for a wheelchair user.”

Today, Luke’s on leave from his job as a structural engineer to mastermind StopGap—a project that aims to dot Toronto’s single-step storefronts with red, yellow, green and blue ramps.

“It’s an effort to get the conversation started about barriers in communities that prevent people from accessing spaces,” he says. “The single-step storefront exists all across Canada so we thought why don’t we paint simple plywood ramps in bright colours and offer them to businesses for free? We get volunteers to build

trailblazer

the ramps and hardware stores donate the materials.”

Luke says the stepped storefronts are a relic from a time when streets weren’t paved and customers used the step to knock the dirt and mud off their boots.

“The ramps aren’t perfect, that’s why we call it StopGap,” Luke says. “They provide a springboard to thinking about really great permanent solutions.”

StopGap has placed almost 400 ramps in Toronto and its how-to manual is sparking similar movements in other cities in Canada and the U.S. Luke rates Toronto a 4 out of 10 for accessibility.

Stockholm, on the other hand, is an 8 or 9.

“The Scandinavians are really progressive and think about everyone when they design stuff.”

Vancouver is a 7.5.

Moving from a life filled with extreme outdoor sports to one where he had just enough movement in his arms to feed himself was tough, Luke says.

“I went from being a back-country skier and someone who loved climbing rock faces and ice climbing, to being someone who can’t get into a restaurant. My world was now an inaccessible space.”

Luke recalls arriving at a Toronto concert venue he’d been assured was accessible to find 15 steps up. “The bouncer met me and said ‘Okay, just hang out here for a second’ and I figured he’d be back to show me the back entrance. But he came back with four of his bigger bouncer buddies and their idea of access was to lift me up those 15 steps. I’m wondering if I should put my life in the hands of these complete strangers or do I

disappoint all of my friends and pull the cord on going to the show. I chose to get lifted up, but it was a situation that shouldn’t have happened.

I kept coming across situations like that and realized something needs to be done.”

StopGap began in 2011 when Luke enlisted friends to help build ramps on weekends.

So far the group has targeted 12 Toronto neighbourhoods. “We knock on doors and talk to business owners, educating them about the need for a ramped storefront,” Luke says. “You’d be amazed that most people don’t quite get it until we shine a light on the problem. Unless you’ve been touched by disability, it’s not something you’d ever think of.”

Ontario’s government has committed to making the province “barrier free” by 2025, but with 10 years to go, “we’re not even halfway there yet,” Luke says. Municipal bylaws aren’t helping. “If you want a permanent ramp you have to apply for a variance that would allow you to encroach on city property,” Luke says. “No mom and pop café can afford that.” Still, “the city is recognizing there’s an issue,” he says, “and we’ve had meetings with bylaw enforcement and right-ofway committees.”

StopGap is organizing a silent auction May 29 and a crowd-funding campaign to support a summer tour that will bring ramps to 12 more communities across Ontario.

“It needs to be on people’s radar that we’re all going to need barrier-free amenities at some point in our lives,” he says.

Visit stopgap.ca.

BLOOM ~ spring ~ 2015 ~ 33

researchhits

Slip slidin’ away

By Louise Kinross

Yikes.

The Canadian winter is treacherous for youth who use wheelchairs or walkers finds a Holland Bloorview study led by scientist Sally Lindsay and published in Disability and Rehabilitation.

Researchers interviewed 12 youth aged 15 to 22 who use walkers and power or manual wheelchairs about the challenges they face. Their comments paint a stark picture: “In the slush and snow my walker seizes up,” explains one participant, who notes that she falls regularly and has broken her leg “more than once.”

From a power wheelchair user: “With public transit sometimes their ramps don’t work… because it’s cold so the hydraulics don’t work…

So even if the bus comes, the ramp doesn’t work.

So you wait for the next bus. I have times where I waited for four buses.”

Snow-blocked pathways and sidewalks force participants onto the road. One was hit by a car at an intersection when she had to drive on the road because the sidewalk wasn’t plowed.

Most youth can’t wear gloves because it impedes their ability to use their walker or wheelchair—so frostbite is a common problem.

One recounted getting stuck on patches of ice and having to wait to ask someone for assistance or call the police. Another was choked when her coat became caught under a wheel.

These extreme conditions led many youth to fear and avoid going out, which made them feel lonely and isolated.

34 ~ BLOOM ~ spring ~ 2015

When they did go out, they had to depend more on parents or others to ensure they were safe, whereas in the summer they could go independently.

Participants suggested strategies to help others with mobility devices cope with winter. These included having equipment more frequently maintained to keep it in top working order; paying more attention to conditions of paths and sidewalks and avoiding problem areas; asking a pedestrian about whether a route is hazardous; giving yourself more time to get somewhere; and putting flags and lights on wheelchairs to improve visibility. To prevent isolation and depression, some participants kept busy in activities like adapted winter or indoor sports.

Girls were less likely to participate in adapted sports than boys.

Because heavy winter coats were hard for youth to put on and limited their movement, they suggested wearing layers with a thinner winter coat. Some wore anti-slip boots.

Researchers found that youth with walkers had more serious challenges in the winter than those with wheelchairs. They recommend that clinicians ensure youth get proper training on maneuvering their wheelchair or walker, and enlisting mentors may be helpful. Expanding clinic times should be considered to recognize the extra time it takes to get to appointments and to assess clients for signs of depression.

A winter survival guide could include tips for spotting hazards at street crossings, maintaining wheelchairs, dressing appropriately and recognizing signs of frostbite, as well as a list of adapted local activities.

researchhits

Science

roundup People with intellectual disability

Genetic change found in one in

Toolbox will help clinicians better

grow old alone

seven cerebral palsy cases

assess pain in kids

A longitudinal Irish study—the first in the world—compares the physical and mental health of 753 people with intellectual disability over the age of 40 with the general population.

Researchers found seniors with intellectual disability are generally alone—single, without children and living in a different area than their family. Almost two-thirds have trouble getting into the community or don’t go out at all. Life for these folks bears little resemblance to that of the typical aging population.

Australian research in Molecular Psychiatry suggests that at least 14 per cent of cases of cerebral palsy are caused by genetic mutations—not lack of oxygen at birth. “Our findings of genetic diversity in cerebral palsy are similar to the genetic architecture of other neurological disabilities…” says genetic scientist Jozef Gecz. “Our research will lead to early diagnosis of some cerebral palsies and aid preventative genetic techniques in the future.”

To address research that suggests chronic pain is undertreated in children with disabilities, Holland Bloorview’s evidence-to-care team developed The Pain Toolbox (hollandbloorview.ca/toolbox).

The toolbox—aimed at clinicians but useful for families—includes evidence-based guidelines for assessing pain, 15 chronic pain assessment tools selected by experts and a guide on how clinicians can use the knowledge in their practice.

For Hanzhen, life is in the detail Hanzhen Yap is a 16-year-old Malaysian artist with autism whose intricate sketches of historical buildings, animals and everyday objects have been shown in 27 exhibitions. This is his favourite sketch—a small Hindu temple in Johor Bahru, where he lives. To read more about Hanzhen, visit hanzhen.org or read our BLOOM interview at hollandbloorview.ca/bloom.

BLOOM ~ spring ~ 2015 ~ 35

CHANGE FOR LIAM IS PUTTING ONE FOOT IN FRONT OF THE OTHER. HELP CHANGE THE WORLD FOR KIDS WITH DISABILITIES. Donate at hollandbloorviewfoundation.ca Holland Bloorview Foundation

@Bloorview

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

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