PA R E N T I N G P O S S I B I L I T I E S
O BL OM HELPING KIDS WITH DISABILITIES GROW
winter 2008
WINTER 2008
fromtheeditor
BLOOM
BLOOM blossoms
ABOUT BLOOM BLOOM covers top-of-mind issues for parents of kids with disabilities by combining firsthand family insights and expert advice from Bloorview Kids Rehab and around the world. We publish two times annually and mail to Bloorview clients in Ontario. Other families and professionals can request subscription information by e-mailing lkinross@bloorview.ca. Visit us online at www.bloorview.ca/BLOOM. PUBLISHED BY: Bloorview Kids Rehab WRITER AND EDITOR: Louise Kinross ART DIRECTOR: Sara Purves PRINCIPAL PHOTOGRAPHER: William Suarez PRINTER: Quality TIme Graphics Inc.
ABOUT BLOORVIEW KIDS REHAB Bloorview Kids Rehab is Canada’s largest children’s rehabilitation hospital. Our vision is to create a world of possibility for kids with disability. We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life. DISCLAIMER Articles in BLOOM are not intended to be a substitute for professional medical advice. Community and web resources listed in BLOOM do not necessarily signify endorsement by Bloorview Kids Rehab. Where appropriate, please consult your physician. SEND US FEEDBACK EMAIL: lkinross@bloorview.ca TEL: 416.424.3866 or 800.363.2440 FAX: 416.425.9332 MAIL: Bloorview Kids Rehab 150 Kilgour Road, Toronto, ON M4G 1R8 LET’S STAY IN TOUCH In order to reach you on a more regular basis, we plan to send BLOOM e-letters that update you on current child disability news and resources and offer a sneak peek at some of the future stories we’re working on. We'll contact all families who have provided their e-mail address at Bloorview's registration. If you don’t wish to receive our updates, please call Bloorview’s privacy officer at (416) 425-6220, ext. 3507. If you’d like to hear from us, but aren't sure if we have your e-mail address, please send it to: lkinross@bloorview.ca
Welcome to a new expanded BLOOM! Editing this magazine for 10 years has been a deeply rewarding experience for me. As a parent of a child with disabilities and the communications manager at Bloorview Kids Rehab, I am committed to BLOOM’s mandate of covering the everyday issues that matter to parents like you and me. Now I’m excited to tell you about our plans to make the magazine bigger and better. We’ve grown from 12 to 20 pages. For the first time, we have room to run your letters – so keep them coming! In future, we plan to run a regular editorial and a “parent picks” column – your recommendations on places and activities that are accessible and welcoming to kids with disabilities. We’ve expanded our coverage of childhood disability research in response to your requests and as part of Bloorview’s commitment to becoming the go-to source for evidence-based information. We continue to shed light on topics that require practical, how-to information you won’t find in mainstream parenting magazines. For example, this issue includes advice on how to cope with multiple life-threatening surgeries in your child. In future, we hope to better balance perspectives on topics and stimulate greater reader dialogue. As always, BLOOM aims to provide you with a unique sense of community and inspiration and welcomes your feedback and ideas. ❁
Louise Kinross BLOOM Editor Photo by Paul Orenstein
yourletters
inthisissue
I am a parent of a teen with Down syndrome, a writer and the lucky recipient of a copy of BLOOM. I just wanted to tell you how much I enjoyed reading the magazine. The writing is fantastic: you tell good stories succinctly yet warmly. And the stories are above average! Not only are the topics well thought out but covering novel, almost taboo yet extremely practical themes. Doesn't hurt that the art direction and photos are top notch. Kudos to BLOOM for putting out a great little magazine! Madeleine Greey, Toronto
It’s nice to hear great stories, but when you know your son isn't even close to having a happy ending, it's very difficult to read other success stories. You feel like what am I doing wrong? How can my son also have a successful story? I would like stories of hope and education like the article “When children hurt themselves” (June 2008). A parent who filled out the BLOOM online survey Editor’s note: We do try to address the very real challenges facing families of children with disabilities and to include children with a variety of disabilities.
I read the latest BLOOM issue. I found it very powerful. The stories were very real and the comments parents made regarding coping and family made me feel like I’m not so strange and different after all. I guess many of us feel the same way. I loved it. Claudia Langill, Toronto
I am the horticultural therapist at the Alberta Children’s Hospital in Calgary and was one of the coordinators for the 2008 Annual Conference for the Canadian Horticultural Therapy Association. Our members were thrilled to receive a copy of BLOOM in their registration packages. It gave many participants some great insight into caring for disabled children. Rebecca Feasby, Calgary
04 Parent talk: Sticking together through the toughest times
06 Role model: ‘When they said ‘roll it,’ I just did it!’
08 Peer support: The perfect match
10
Hot topics: Finding a home that fits
11 Money matters: Summer fun: make it affordable!
12 Trailblazer: A doctor dreams of change
14 Research hits: The power of body language It gets easier with time Science roundup
18 Stressbusters: Helping worried kids cope
19 Noteworthy: Websites - Books - Facts
ON THE COVER u Photo of Claire Marshall. See story page 8.
BLOOM ONLINE u Read more online at www.bloorview.ca/bloom
uComment on these letters or send your own to lkinross@bloorview.ca bloom ~ winter 2008 ~ 3
parenttalk
BY NEIL AND KERI KERBY
Our son Joseph was born with a heart defect and has spent a lot of time in hospital. He’s had six open-heart surgeries and most recently spent six weeks in rehab at Bloorview. During Joseph’s first surgeries as a baby we got to know other couples in the intensive and critical care units whose children had long-term cardiac problems or cancer. Over time, most of those marriages broke up. Usually the mom would be at the hospital making life-altering decisions about the child while the dad was at home trying to hold the fort down, care for the other kids and pay the bills. They often had no appreciation for what the other was going through and there was a lot of unspoken guilt and resentment.
w Put family before careers. When Joseph has a serious surgery planned, Neil’s doctor puts him on stress leave so that he can receive 55 per cent of his pay for 16 weeks. Neil has lost jobs in the past because employers find it hard to accommodate time away. We know it’s not the end of the world because jobs come and go, but family is our long-term responsibility. w Try to be together to hear important information from specialists. It’s challenging if one parent is always put in the role of conveying distressing or complicated information to the other.
When we saw other relationships break under this stress, we made a pact that whenever we could we would be together at the hospital and make clinical decisions about Joseph together.
It hasn’t been easy, but these are strategies we’ve used to cope with long hospital stays and make it possible for both of us – and our other children – to be at the hospital or close by. w
Ask family and friends for help. When you have a child with a life-threatening illness, you can’t do it alone. People want to help and for the sake of your marriage, you have to let go of any pride and ask for help. Friends and relatives might take care of your other kids at home, drive grandma to the hospital, or visit with your sick child so that you and your partner can take a much-needed break. w Seek financial assistance. Your social worker can help you access sources and fill out forms. In Ontario, we use Assistance for Children with Severe Disabilities to help cover the costs of accommodation, travel and food. We stay in subsidized family accommodations at the hospital or at nearby Ronald McDonald Houses. We are lucky that our community has also held several fundraisers to help with the costs of Joseph’s hospitalizations.
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w
Involve your other children as much as possible. During a recent stay at Bloorview, four of our other five children stayed with us. They need the stability of being with both parents and we don’t want Joseph singled out from the family because of his illness. Our other children need to understand what Joseph is going through and can be a great source of distraction and motivation.
‘When you have a child with a life-threatening illness, you can’t do it alone.’
w Develop a CarePages website (www.carepages.com) to stay connected to family and friends. Every night we write posts on Joseph’s progress. w Draw on your faith or belief system. We believe that whatever happens, we can deal with it, and there’s no point getting upset over what we can’t control. We try to focus on how we can change a situation so we can deal with it better, or how we can change ourselves to better adapt. w Recognize that when you return home, it’s a big adjustment! While in hospital, you have one focus: to help your child survive. You forget to eat, you don’t sleep, and you forget what it’s like to be married. During our first week home we try to have time alone as a family to regenerate. In addition to your child, you and your spouse have wounds that need special care and attention. It’s important to remember the small things – like holding hands, making a special dinner and communicating how you feel. ❁
Sticking together through the toughest times bloom ~ winter 2008 ~ 5
rolemodel
‘When they said ‘roll it,’
Krystal Nausbaum loves parties, Broadway musicals and the colour pink. She’s self-assured, gregarious, and has a wacky sense of humour. The 19-year-old just began a high school co-op program working at a local daycare. She recently played Phoebe in the TV movie of the bestseller The Memory Keeper’s Daughter, about a doctor who sends his newborn daughter with Down syndrome to an institution. BLOOM interviewed Krystal about growing up with Down syndrome, becoming independent, and her dreams for the future.
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Left: Photo by Don Nausbaum
I just did it!’
What was the greatest challenge growing up with Down syndrome? It’s frustrating. I always compare myself to other people who don’t have Down syndrome. Last year I was a counsellor-in-training (CIT) at camp. This summer all of the other CITs from last year got to become counsellors, but I didn’t. I hate having Down syndrome because it’s frustrating. What has helped you become more independent? I had coaches (from Bloorview). They help with budgeting your own money and shopping, cooking and learning different subway routes. Before I didn’t know how to go on the subway but I got much better and now I can go to school and know some other routes. Do you like high school? It’s okay. I’d prefer boys and girls, but my school is just girls. Have you ever been teased or bullied? Some people get picked on and teased at my school but nobody teases me. I’m the smallest one in the school and they think I’m cute. When I was young, kids used to say ‘What’s wrong with you when you talk?’ Some people think I’m slow. What would you do if you were teased? I can stand up for my rights. It doesn’t matter if I have Down syndrome. What do you enjoy doing? I love musicals. I’ve seen a lot of Broadway plays: Beauty and the Beast, Annie, Snow White, Wicked, Hair, Chicago, Mamma Mia, Lion King and Rent – twice! I like acting and writing screenplays.
Krystal with fellow cast members of The Memory Keeper’s Daughter. The movie is now available on DVD at your local video store or at Bloorview’s library (416) 425-6220, ext. 3517.
How did you feel when you found out you got the part of Phoebe after Lifetime Network did a North American search? It was unexpected. I was walking home listening to my walkman. I came inside and everything was loud and my Mom said: “Hi Phoebe.” I’m like “Hi Mom.” I turned off my walkman and my Mom said “Hi Phoebe.” I said “I’m what?” Then I listened to the voice mail from the casting guy and I got the part and I was jumping around and yelling. What was it like being on the set? I loved the makeup trailer. All the people who were acting were in there and I got to meet them. I hated the wig I had to wear. It was a hair nightmare! And I hated that wrapping thing they put on so I would look flat when Phoebe was younger. Were you nervous to work with actors like Dermot Mulroney, Gretchen Mol and Emily Watson? No. When they said ‘roll it,’ I just did it! What did you think about the storyline of the father who sends his baby daughter with Down syndrome away. There were lines I didn’t like. Like when they called the baby a mongoloid and half a brain. How did you memorize your lines? I practise with people. What are your dreams? I want to be in more movies. I want to act. I love going out to movies and watching them on my portable DVD. I can relate to some of the characters. I can feel it. ❁
Real-world coaching Krystal participated in Bloorview’s Skills for Transition program. It pairs teens with a life-skills coach who helps them set and achieve independence goals. Want to learn to cook, budget for clothes, write a resumé or take the TTC to a movie? Skills for Transition at Bloorview can make it happen! Call (416) 425-6220, ext. 3296.
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peersupport
The perfect match ‘A parent who’s lived and breathed it’
The
Susan Marshall was pregnant with daughter Claire when she learned that Claire would be born missing her left hand. “My first reaction was disbelief, and then it was this sense that this child isn’t even born yet and already has a big deficit, a loss that would have a big impact on a day-to-day basis,” Susan says. “It was very emotional.” Then something changed. Susan was connected to the mother of a 10-year-old boy with a similar limb difference. “She explained that children who have never had the use of that limb learn to do things a bit differently, it may take a bit longer, but they’ll be able to do everything – tie their shoes, swim, participate at school, play music. I found out her son went to the same camp as my other children. Without talking with this parent, my pregnancy would have been so hard. Now I felt hopeful and inspired. I hung up the phone and said: ‘We can do this.’” When Claire was six months old, Susan made contact with another parent of a child with a similar condition – this time through the Matching Mothers program of the War Amps of Canada. Susan was matched with Gillian Sutherland, mom to Megan Strysio, who is 11 (see picture of Megan and Claire together, right). “It was great to talk about the emotional side – how we found out, what our reactions were – and to ask all kinds of practical questions,” Susan says. “When did you get her fitted for a prosthetic? Why? What do you do about people staring and how do you respond? How did Megan learn how to answer questions? “I found Gillian to be such a positive person and she said it was a matter of giving Megan the message that she could do everything she wanted to do, that everyone has differences, and that you can be okay with this.” Claire will be getting her first myoelectric hand soon and Susan is eager to discuss the ins and outs with Gillian. “It’s one thing to talk to an expert, it’s another thing to talk to a parent who’s lived and breathed it.” 8 ~ winter 2008 ~ bloom
Hooking up Ask your children’s rehabilitation centre if they have a matching program. Or contact the local or national association for your child’s specific condition (e.g. the cerebral palsy or brain injury associations). Or try these organizations: u www.raredisorders.ca
Canadian Organization for Rare Disorders u www.rarediseases.org
National Organization for Rare Disorders (U.S.) u www.geneticalliance.org
The Alliance of Genetic Support Groups u www.netnet.net/mums
Mums United for Moral Support u www.our-kids.org
An e-mail list of parents, caregivers and others supporting kids with a variety of disabilities u www.familyvillage.wisc.edu
A global community of disability-related resources, including parent-to-parent programs.
Why does parent support work? A 1999 Journal of Intervention study of parent-toparent programs across five American states found that parents who were able to speak to another parent who had a child with the same disability: felt more accepting and positive about their situation; felt better able to cope; and made more progress in getting help with the problem that motivated them to call the program, when compared to a control group. “Although professionals can and do offer many important services, their language, viewpoint, and day-to-day experience is simply very different from that of family members,” the authors say. ❁
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hottopics
Finding a home that fits Accessible family housing scarce, report says Research shows that having a child with a disability is linked with family poverty, so it’s no surprise that families of kids with disabilities are more likely to need affordable, accessible housing. Bloorview Kids Rehab recently submitted a report to the City of Toronto – which is developing a 10-year affordable housing plan – to highlight the challenges facing local families. Based on two focus groups, the report finds that Toronto families with children with disabilities are:
According to the Bloorview report, accessible housing in Toronto is often designed for single adults, so even when families make it to the top of the wait list, they don’t get the number of bedrooms they need or the wide spaces their child needs to use a wheelchair, walker, lift or hospital bed. One focus group family of five lived in a one-bedroom apartment. Another family – waiting for 13 years for accessible housing – was being threatened with eviction from a private rental because of damages caused by the child’s wheelchair. A third has to make a judgment call about whether to carry their child down 13 flights of stairs – a risk to the child and parent – during weekly fire alarms.
u waiting up to 10 years and longer to get into
affordable, accessible housing u and living in inaccessible housing that is unsafe,
overcrowded, limits children’s independence and in some cases consumes up to 75 per cent of the family income. The anecdotal evidence from the focus groups was reinforced by research and a literature review that showed that this problem isn’t unique to Canada. In fact, we can learn a lot from the great work that has been done to improve accessible housing in the UK and within the European Union. 10 ~ winter 2008 ~ bloom
Bloorview’s report notes that accessible housing is linked with positive health and social outcomes for children and their families. It recommends that accessible housing that meets the needs of these families become a priority in Toronto’s new housing plan and that the definition of “hard to house” be expanded to include families of children with disabilities. Bloorview is continuing to meet with all levels of government to ensure that the needs of our families are not forgotten in housing policy. ❁
moneymatters
Summer fun:
make it affordable
Kids are expensive. Add a disability and the cost of one-to-one workers, special equipment and transportation and sending your child to camp may be beyond your reach. A day camp that costs $100 a week can quickly turn into a $1,000 proposition when you factor in an additional $150 a day for a support worker and the cost of a wheelchair taxi to and from camp.
“Asking for financial help is a type of advocacy for your child,” says Barb Anthony, recreation awareness program co-ordinator at Bloorview Kids Rehab. “Children with disabilities are deserving of extra help and if we don’t ask, who will?” Barb notes that it’s easy for parents to lose confidence if one avenue of funding doesn’t pan out. “Sometimes we try one route and get so disheartened when we’re turned down, that we don’t ask anymore.” Perseverance is essential, she says. ❁
There are ways to make things more affordable, but they require research, advocacy and early planning. Contact the social worker or recreation therapist at your child’s rehab centre – or visit the rehab centre’s website – to find out about disability groups, wish organizations, service clubs and charities that provide funding for summer camps and recreation activities. Ask about free summer programs in your area, places where you can borrow equipment your child may need – like an all-terrain wheelchair – and volunteer programs that may support your child. You can also do an internet search using words like camp + funding + disabilities + charity + your location. Depending on the funding source, you may need to fill out an application form or write a letter. The letter should include a short description of your child – including age, interests and disability – and describe the impact a summer program will have on your child’s life.
Funding tips Start early. Some programs allocate a fixed amount of financial assistance for the year, and it’s first come, first served. Cast your net wide. Don’t be afraid to ask all of your contacts about funding – even if you think it’s a long shot. For example, Jennifer Johannesen never considered applying to Chai Lifeline, a group that supports Jewish children living with serious illness or disability. Her son Owen, who has cerebral palsy and complex medical needs, is not Jewish. However, when Jennifer asked whether Adventure Valley Day Camp in Toronto could accommodate Owen, the director called Chai Lifeline to see if the group would cover Owen’s camp fees. They did! See Owen with two of his counsellors left. Develop a compelling personal story about why your child would benefit from a particular camp.
Don’t forget to ask the director of the summer program you’re interested in if they offer financial assistance or know a source that does.
bloom ~ winter 2008 ~ 11
A doctor dreams of
change
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trailblazer
‘I want to use the expertise I gain at Bloorview to empower the kids and families I see back home in Jamaica.’
Who: Sharon Smile, pediatrician in Kingston, Jamaica and a resident in the University of Toronto’s two-year training program in developmental pediatrics, which is based at Bloorview. What: Becoming accredited as a pediatrician who specializes in assessing and treating children with developmental disabilities – and their families – as part of a multidisciplinary rehab team. Plans to return to the University of the West Indies – where she’ll be one of only two specialists serving the whole country – to “change the way physicians there look at kids with disabilities and make them aware of the possibilities for treatment,” Sharon says. “Because we don’t have services like speech or occupational therapy, I need to grasp the ins and outs of these therapies so I can provide families with tools they can use. Most children with developmental disabilities are sheltered at home in Jamaica. One of my goals will be to change that.” Where: Sharon did electives in the United States and Canada before choosing developmental pediatrics as her subspecialty and Bloorview as her training ground. “I was impressed with the Canadian approach which was more holistic and team-based,” Sharon says. “Children and families are multi-faceted. The pathology is just one part of the overall picture of the child. How do they think? How do they socialize? How do they communicate? You have to be able to link all of these areas together and come up with a holistic plan.
When: Sharon began her fellowship in 2007 and will return to Jamaica to share her expertise next summer. Why: “As a pediatrician, I’m trained to know concrete pathology. But kids with disabilities are so intricate. No two are the same. They're unpredictable and always changing. You can’t learn about them in a textbook or in medical school. You need hands-on interaction in a rehab hospital like Bloorview. Right now, there’s only one developmental pediatrician for the entire island of Jamaica, with a population of 2.5 million. I want to use the expertise I gain at Bloorview to empower the kids and families I see back home in Jamaica. How: Bloorview’s developmental pediatrics program includes clinical time assessing and treating children with a wide range of disabilities in Bloorview’s child development program and two satellite clinics; rotations at the Hospital for Sick Children in areas like child psychiatry, neonatal follow-up, neurology and genetics; and research. “Staff in this program are very open to learning and teaching, so as a motivated student, the sky’s the limit,” Sharon says. ❁
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researchhits
‘It’s a rich, unmined environment’ Bloorview biomedical engineer Tom Chau received an Ontario Early Researcher Award this fall for his body-talk research, which aims to give children who are unable to speak or move a way to express themselves through subtle body processes like breathing pattern and heart rate. The Early Researcher Awards help gifted Ontario researchers build their research teams with funding of $140,000. "It will enable us to continue to attract and retain the most passionate graduate students and postdoctoral fellows from around the world,” Tom says. One of those is University of Toronto PhD student Stefanie Blain. We profile her work in Tom’s lab, right.
Who: Stefanie Blain, third year PhD biomedical engineering student. What: Finding a way to unlock the world of communication and control for children and adults who have no speech or movement. “They can’t talk to people or control their environment – essentially they’re locked in to their own bodies,” Stefanie says. Where: The Bloorview Research Institute. “It allows me to combine cutting-edge technologies and engineering skills to make a difference in the lives of children,” Stefanie says. “With Bloorview’s research institute and hospital under one roof, there’s a unique concentration of great minds in rehabilitation.” When: Stefanie came to Bloorview as an undergraduate in 2003. “A PhD is a marathon,” she says. “If you don’t have a reason to keep going, you can get burnt out. The children at Bloorview are my reason.” Why: “Children who are ‘locked in’ don’t have any way to express their identity,” Stefanie says. “They can’t make the most basic choices. If we can find a way for these children to convey their thoughts and intentions, what’s possible will only be limited by their imaginations.”
What a parent says u "Max is 15-years-old and trapped in a body that doesn't reliably or consistently work," Karen Castelane (second from left) told Ontario Minister of Research and Innovation John Wilkinson (far right). Also present at the funding announcement were Bloorview PhD student Stefanie Blain (left), client Max Weinryb, centre, and scientist Tom Chau (second from right). "The body-talk research is the first and the closest we've come to unlocking the door to Max's world: his needs, feelings, opinions, observations, learning and independence,"Karen said. "What parent wouldn't want to hear their child say 'thank you,' 'I'm having fun' or just 'I love you?'” 14 ~ winter 2008 ~ bloom
How: Stefanie is training a computer program to decipher subtle body signals – such as breathing pattern, heart rate and skin temperature – then translate them into electronic speech or computer commands. “It’s a rich, unmined environment. If we can give children the ability to say ‘yes’ or ‘no,’ to scan letters, to select buttons that control a computer or television, it will open a new world for them.” ❁
The power of
body language bloom ~ winter 2008 ~ 15
researchhits
It gets easier with time Older parents cope better with a child’s disability, study finds Respondents completed a mail survey and phone interview that measured how frequently they had negative emotions such as sadness, anxiety and hopelessness; their overall psychological wellbeing; and their number of physical symptoms – including headaches, backaches and trouble getting to sleep. “There were higher levels of negative emotions and (physical) symptoms in parents of children with disabilities,” Jung-Hwa says. However, wellbeing in older parents of kids with disabilities was similar to that of the comparison group.
Having a child with a disability takes a toll on parents’ emotional and physical wellbeing, but over time parents adapt, a major new study finds. The study – published in the Journal of Health and Behaviour – shows that as parents of children with disabilities age, their health more closely mirrors that of parents of typically developing children. “There is a significant difference in the emotional and physical health of parents of children with disabilities, but the gap narrows in older ages and for emotional health virtually disappears,” says lead investigator Jung-Hwa Ha, an assistant professor of social work at the University of Chicago. “What’s important is the resiliency of parents over time.” The researchers analyzed data from the Study of Midlife in the United States (MIDUS) – a randomized, population-based sample of men and women across a 50-year age range – to compare the emotional and physical wellbeing of 296 parents of children with developmental or mental-health problems with a group of 1,393 parents whose children didn’t have disabilities.
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The authors suggest that adaptation and maturity play a role. While the unexpected birth of a child with disabilities may crush young parents, “over time they find joy with their child, adapt to their role as a caregiver and adjust their expectations,” Jung-Hwa says. And older parents may simply be more mature and “better able to deal with the everyday stresses of having a child with a disability.” The study found no difference between the wellbeing of mothers ‘What’s and fathers of children with important is disabilities. It did show that working parents had fewer negative emothe resiliency tions and better psychological of parents wellbeing, suggesting that taking over time.’ a break from caregiving may protect parents from experiencing acute distress. A weakness of the study is that it didn’t follow the same respondents over time, but looked at a crosssection of people aged 25 to 74. Long-term studies are needed to confirm whether parents of children with disabilities are better able to cope as they age. In future, Jung-Hwa hopes to look at whether race, religious faith or marital status play a role in helping parents adapt to a child’s disability. ❁
Science
roundup This is a new column in BLOOM that highlights recent childhood disability study results and ongoing research. u Robots give babies new mobility Researchers at the University of Delaware are developing smart vehicles for babies born with mobility impairments. “Babies literally build their own brains through their exploration and learning in the complex world,” says researcher James Galloway. But infants with Down syndrome, cerebral palsy and other disorders may not be able to explore in the same way as their peers. Babies as young as seven-months-old can drive the robot prototype with a joy stick (see photo above). u Eyes hold clue to early signs of autism The extent to which toddlers focus on mouths rather than on eyes is an indicator of autism severity, according to a study published in the Archives of General Psychiatry by scientists at Yale School of Medicine. Using eye-tracking technology, researchers found that two-year-olds with autism looked significantly more at the mouths of others, and less at their eyes, than typically developing toddlers. “We hope this technology can be used to detect and measure signs of an emerging social disability, potentially improving a child’s outcome,” the authors said. Archives of General Psychiatry, 65 (8), 946-954
u Children map accessibility with BlackBerries A dozen Ontario children who use wheelchairs or walkers are mapping their movements so that researchers can measure the accessibility of their homes, schools and neighbourhoods. The children carry speciallyprogrammed BlackBerries that track their routes and use tablet PCs to sketch the places they visit. Scientists at the Bloorview Research Institute will build on these findings by surveying about 1,000 school-aged Ontario children with mobility disabilities to study the barriers they face and identify solutions. The study is funded by the Canadian Institutes of Health Research and the technology and wireless services were donated by Research in Motion and Telus Mobility. u Low-cost knee tested in San Salvador A prosthetics clinic in San Salvador, El Salvador is participating in clinical testing of a low-cost, highly functional prosthetic knee developed at the Bloorview Research Institute. The knee was developed to meet the needs of about a million people who have suffered war-related, above-knee amputations in the developing world and can’t afford traditional devices. Bloorview researchers simplified the knee mechanism to three parts that can be manufactured using injectionmoulded plastic instead of expensive machined metals, cutting the cost from thousands of dollars to about $50.
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stressbusters
Helping worried kids
cope
“There’s nothing to be afraid of!” What parent hasn’t blurted this out when trying to calm seemingly irrational fears in their child? But if your child struggles with anxiety, it’s not helpful. That’s because it doesn’t teach children to identify the distorted thoughts that are often at the root of excessive worry, or to recognize and tame its disturbing physical symptoms. “You want to give your child tools that will help them face the situation and cope,” says Bloorview psychologist Andrea Snider, who leads Coping Kids, a 10-week group for children with disabilities aged eight to 12 who struggle with anxiety. Fears and worries are common in children and anxiety has been reported as one of the most common forms of psychological distress in people with intellectual disabilities. “If your child is anxious, the first step is to determine if the fear is realistic – for example, does your neighbour have a viscious dog?” Andrea says. “In a case like that you need to protect your child from danger.”
‘Children who are anxious often tend to catastrophize.’
But if your child is petrified of a school test – even though she’s always done well and has studied hard – or refuses to go to gym class because she thinks kids will make fun of the way she runs, there are cognitive and relaxation techniques that can help your child face the situation and cope. “Children who are anxious often tend to catastrophize – to see a situation as unimaginably huge,” Andrea says. “What they don’t recognize are the distorted thoughts running through their head and magnifying
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their fears,” Andrea says. “In Coping Kids, we get children to practise identifying what they’re thinking.” For example, the child who’s frightened of a test may be telling himself: “I’m going to fail. Everyone will think I’m stupid. What if I fail the entire year? My life is over.” In Coping Kids, children share examples of fearprovoking thoughts and record what they think during anxious times at home or school. With practice, children learn to stop alarming thoughts and replace them with more balanced ones, Andrea says. For example, the child with a fear of tests can say: “I’ve studied a lot and I know this stuff. I’ve done well on tests before. It will be okay.” The child who used to respond to teasing by telling herself “I’m a loser and everyone hates me” learns to instead say: “That guy must be having a really bad day. Thank goodness I know there are lots of other people who like me.” Recognizing the physical symptoms of anxiety is a trigger for kids to calm themselves. “We play a game where we put a huge cut-out of a body on the wall and kids come and draw on the body what they feel when they’re scared,” Andrea says. “It could be their knees shaking, hands sweating, or heart pounding.” Children are taught relaxation strategies, including deep breathing and muscle tension and relaxation. “We emphasize that all kids and adults get scared and there will always be situations that make us anxious. But children can learn to talk themselves through these situations and cope better.” ❁
u More on anxiety Keys to parenting your anxious child, Katharina Manassis, 1996. Available at chapters.indigo.ca or call the Bloorview library, (416) 425-6220, ext. 3517.
The Short Bus: A Journey Beyond Normal, Jonathan Mooney, 2008
5minutesforspecialneeds.com Support and inspiration from bloggers who are parents of kids with special needs.
Schuyler’s Monster: A Father’s Journey With His Wordless Daughter, Robert RummelHudson, 2008
www.childhooddisability.ca Childhood Disability LINK
Road Map To Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome, Jennifer Graf Gronenberg, 2008
www.nichcy.org National Dissemination Center for Children with Disabilities www.nhlbi.nih.gov/ childrenandclinicalstudies What you need to know about participating in clinical studies, from the U.S. National Institutes of Health
FACTS
deafplanet.com The first TV show and website in American Sign Language.
BOOKS
WEBSITES
noteworthy
All books available at www.chapters.indigo.ca or by calling Bloorview’s library at (416) 425-6220, ext. 3517. It’s About Ability – a tool that explains the Convention on the Rights of Persons with Disabilities to children, and how they can use it to advocate for equal treatment. www.unicef.org/media/files/ PDF(2).pdf
Unicef estimates that there are 200 million children with disabilities – 10 per cent of the world’s children. Eight out of 10 students with an intellectual disability are bullied, according to a 2007 study of 507 youth aged eight to 19 from 46 schools across England, Wales and Northern Ireland. The study was conducted by Mencap, which represents 1.5 million people with intellectual disabilities in the United Kingdom. Visit www.mencap.org.uk, click on resources, and then click on publications to download Bullying wrecks lives. Canadian surveys suggest that 63 per cent of the homes of children with disabilities lack the necessary ramps, elevators, automatic doors and accessible doorways. Canadian Council on Social Development, 2006
Planning a gift for Bloorview in your estate can allow you to achieve your philanthropic goals, while maximizing tax benefits to your estate. There are many options for planned gifts, including bequests, life insurance, charitable trusts, annuities and named endowments. Bloorview sees a world of possibility for every child. With your help, children with disabilities will always be able to count on Bloorview. Please consider a legacy gift to children with special needs. For more information, please contact us at 416-424-3809 or send us an e-mail: foundation@bloorview.ca.
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I believe in a world of possibility
Bloorview Kids Rehab: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.bloorview.ca
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