BLOOM Summer 2009

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

summer 2009

SUMMER 2009

BLOOM 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 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

inthisissue

03 Your letters

04 From the editor: The Enough House

06 Parent talk: Give your child a voice

08 Role model: Have joystick, will travel

10 Peer support: • The guessing game – A child with a disability but no diagnosis • How one mom deals with the unknown 12 Parent picks: Your tips on accessible places and activities

13 Money matters: Save for your child’s future

14 Life skills: Getting from A to B – How to teach your child to use public transit

ON THE COVER u Crystal Brown, 16

yourletters

16 Trailblazer: One dad’s mission to save respite

18 Research hits: Shining a light, unlocking a mind

f

20 Research hits: • New research funding targets social inclusion • Flip2sit 22 Science round-up: • Does ‘trust hormone’ play a role in treating autism?

• Alternative therapies popular in chronic conditions • Have Wii, will walk 24 Talk back: A different approach – A behaviour analyst responds to a BLOOM article about self-injury 26 Clinical research: Bridging science and medicine

27 Noteworthy: Websites - Books - Facts

I got your BLOOM e-letter. Thank you very much for your informative and beneficial message regarding the RDSP. This is encouraging, indeed. Thanks again for the great help and making us aware of the beneficial opportunities. Our happiness knows no bounds with this.

Joginder Singh Sekhon Brampton, Ont. I have just received the BLOOM Winter 2008 edition and just want to say, that despite the huge pile on my desk, I became engrossed in it! It is an amazing magazine – packed with information, insight, inspiration and understanding. Congratulations on an excellent publication.

Vicky Earle Executive Director, Grandview Children's Centre Oshawa, Ont. I'd love to get a hard copy of BLOOM from now on. The woman who wrote about the autism t-shirts actually bought the shirts at my online shop! I too am a mom of an autistic son and her story (BLOOM Summer 2008) touched me so much.

Alison Eitzmann Ballston Lake, NY I find BLOOM very helpful and inspirational.

It would be great if you could start a forum for parents and others to discuss the articles here.

From an online reader Editor’s note: Plans for greater online interactivity are in the works.

BLOOM ONLINE u Read more online at www.bloorview.ca/bloom

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

bloom ~ summer 2009 ~ 3

fromtheeditor

The Enough House

L

ast summer, while reading Charles Dickens’ Great Expectations, I was surprised to come across reference to a mansion called Satis House – “which is Greek, or Latin, or Hebrew, or all three…for enough,” said the character Estella.

“Enough House,” replied the protagonist Pip. “That’s a curious name, miss.”

“Yes,” she said, “but it meant more than it said. It meant, when it was given, that whoever had this house, could want nothing else. They must have been easily satisfied in those days, I should think…”

I want to live in the Enough House, I thought, where we are enough, just exactly as we are.

My son Ben was born with a rare genetic disorder and over time we learned he had many disabilities.

He’s 15 years old now, and we’ve spent most of his life trying to get him to do things he simply can’t: to grow, to hear, to speak, to write.

When he was a toddler, and still scooting on the floor while his peers stood up and ran, I remember bargaining with God that if he would just let Ben walk, I would never ask for anything else. At the time, we were struggling to put him through rigorous home physiotherapy exercises twice a day.

Ben did eventually walk – albeit slowly and with pain in his knees – but I didn’t keep my end of the bargain.

4 ~ summer 2009 ~ bloom

Of course, it wasn’t enough.

There were years of special diets, a stomach-feeding tube and growth-hormone shots to get him to grow; speech therapy four times a week and trips outside the country to see specialists; and occupational therapy to improve his fine-motor skills. We tried every alternative therapy going. But in the end, none of these things worked. He never acquired speech, he can’t write functionally and he’s half the size of his peers.

We live in a culture that values constant self-improvement. There’s always something to be worked on, some future state that will be preferable to the one you’re in now: a time when you’ll be happier, smarter, richer or more youthful.

I think that value seeps into the world of children’s rehab, and makes it hard for parents to feel blessed with who their children are, just as they are. We’re so busy “working” on things with our kids, trying to turn every interaction into a therapeutic one – that we can lose sight of their inherent wholeness. I used to long to read a book with Ben just so we could sit together, he in my lap, giggling at the funny parts – and not because it was a way of squeezing out one more word attempt.

No parents want to look back and feel they didn’t do everything possible to promote their child’s development during the preschool years, when the brain is most plastic. And it’s easy to get caught up in the latest “magic bullet” treatment you read about in the media or on the web.

But sometimes, during those gruelling years of intervention, I wish I could have breathed deeply and told myself: “It’s enough. It’s enough that he’s alive, it’s enough that I love him, it’s enough that we have joy together.”

I wish I could have visited the Enough House more often.

Because in the larger scheme of things, enough is all that matters.

Louise Kinross BLOOM Editor Photo by Paul Orenstein

But time was ticking, and he wasn’t meeting his milestones.

There’s a push and pull – especially early on – between wanting to accept our children for who they are and wanting to make the disability go away.

bloom ~ summer 2009 ~ 5

parenttalk

voice

GIVE YOUR CHILD A

BY PAULA HOHMANN

When my son Marshall got his first voice box at age five, what he wrote blew me out of the water.

“I love you Mommy.”

“I’m tired and so are you.”

And to his siblings: “At least you get to play hockey. I’d love to play hockey.”

Marshall (in photo above) was born with cerebral palsy and quadriplegia and doesn’t speak. He communicated well with facial expressions, but it wasn’t until he had his voice box that I saw the depth of his intellect.

6 ~ summer 2009 ~ bloom

I knew then that I wouldn't have to guess what he wanted anymore. But there were new challenges – ones we’re still facing now that Marshall is 17 and in a regular Grade 10 program.

Marshall hits a head switch to scan to the words and letters he needs on a screen mounted in front of his wheelchair. Unlike speech, it takes time, and often people aren’t willing to wait. So at school, a student will say “Hey Marsh, how’s it going?,” then keep on walking.

People aren’t comfortable with technology and will look away. Sometimes they can’t hear the device if it’s noisy. Or the machine breaks down. Or people assume

‘As parents, we think we know our kids best. But when they can’t speak, we often make assumptions that are wrong. With his voice box, my son is always surprising and teaching me.’

that if you can’t speak, you don’t have anything important to say.

When your child has significant physical needs, transporting the voice box around with its attachment and wires is a pain. It’s cumbersome and you have to be willing to go that extra mile.

People who work with your child may not put in the effort. For example, Marshall went to a camp for children with disabilities and they didn’t hook him up to his voice for a week, even though I’d spent a day training everyone. He lost 11 pounds and couldn’t tell them he was thirsty. In Grade 7, his class went to a careers day in an inaccessible school. Because the teacher and education assistant had to carry his wheelchair up and down the stairs, the voice unit never made it. So here he was at a careers day, and he couldn’t ask any questions. I’ve seen young children without their devices, sitting in a classroom in a corner.

Access to a voice box for youth like Marshall is a safety issue. Last year, he got off the school bus one day with his head bleeding. The staff asked the bus driver what happened, and he shrugged his shoulders. It wasn’t till Marshall was hooked up to his voice that he could tell us that the driver forgot to strap down his chair in the bus, so when they went round a corner, his chair tipped over.

As parents, we think we know our kids best. But when they can’t speak, we often make assumptions that are wrong.

With his voice box, my son is always surprising and teaching me.

Paula’s tips on voice technology Never assume you know your child so well that they don’t need their voice unit. Their likes and dislikes change.

Make the commitment to taking the voice box everywhere your child goes, and insisting it’s used.

Educate. If kids are pointing at your child at a restaurant, go over and explain that your child doesn’t speak.

Invite them to come over and see how the voice device works.

Be a relentless advocate for your child. For three years, I called the school board everyday because it took that long to get a computer into Marshall’s home school. When we were told Marshall couldn’t go on an ice rink in his ring walker, we drove straight to the local parks and recreation to complain.

If your child has complex needs and is going to camp or a community program, the only way to ensure his voice device is used is by sending your own one-on-one worker.

MSN is a great equalizer for kids who use voice technology because the person receiving the message doesn’t have to wait for the reply. It’s been a huge door-opener for Marshall.

Don’t give up hope. You have to go way beyond what you want in order to gain half of it. Shoot for the stars and know you’ll get to the moon.

bloom ~ summer 2009 ~ 7

‘We’re so close, it feels like we’re twins.’

8 ~ summer 2009 ~ bloom

rolemodel

Have joystick,

will travel

In some ways, Joey Shek is a typical five-year-old boy.

He loves cars, playing tag and going to school.

But in other ways, he’s one-of-a-kind. His favourite food? An apple. A funny tale? “The time I went to a farm and the cow started eating my tubes,” he says, giggling and shaking his head. “I had to call the nurse for help.”

Joey’s tubes – which keep him attached to a portable ventilator – are as much a part of him as his big brown eyes and exuberant personality.

Joey has a rare form of muscular dystrophy that weakens his muscles. But despite his complex medical picture, he’s a regular kid who zooms through the halls at Bloorview in a miniwheelchair he drives with a joystick. “I like going fast,” he says, a helium balloon trailing in the air behind him.

For the last two years, Joey has lived on Bloorview’s complex, continuing-care unit.

“I live here because I have a tracheotomy,” he explains. With his battery-powered ventilator and a nurse, he catches a bus from Bloorview each morning and heads over to kindergarten at a neighbourhood school. He and his six-year-old brother Kevin are in the same class (see photo left).

“We’re so close it feels like we’re twins,” Joey says, noting that he’ll soon be teaching his brother, who also has muscular dystrophy, how to use a power wheelchair.

When Joey got his first set of wheels at Bloorview, his independence blossomed. “He makes visits to other rooms and will approach other kids to say ‘Hi, how are you?’ even when he knows they’re non-verbal,” says nurse Corey Mackenzie Rath. “He’s a sweet, thoughtful boy.”

Joey is a social butterfly who never forgets a face. He’s also a chatterbox who loves asking questions and teasing staff. “I want to teach you how to play better, Lyn,” he says earnestly, sitting across from early childhood specialist Lyn Howlett at a game of Break the Ice. Joey’s school nurse Kate Govia says he keeps her on her toes. “When we’re leaving in the morning, he’ll ask me: “Katie, do you have everything? Do you have the suction machine? Do you have my ambu bag?”

Last year Joey invited his classmates to visit his house, Kate says. “They had a field trip to see his room at Bloorview and Joey also showed them the pool and the creative arts studio. He was so proud.”

bloom ~ summer 2009 ~ 9

peersupport

The guessing game A child with a disability but no diagnosis Max Sexta was born paralyzed from the waist down, with nerve and brain damage.

disabilities. I had him in regular daycare and had to coach the staff on how to handle him.”

Doctors thought he might have a fatal form of muscular dystrophy.

At age two, Max was accepted into Bloorview’s neuromuscular program, and “that was good for us. Even though we were an oddity and didn’t fit, we at least had someone to follow Max.”

“The anxiety of waiting to find out if your son is going to die – and not being able to do anything about it – was huge,” says Max’s mother Katharine.

After two-and-a-half years of tests, “they threw up their hands and said ‘we can’t figure out what’s wrong.

He’s a mystery.’”

Having a child with a disability but no diagnosis can be terrifying and isolating.

While Katharine was happy her son had escaped a more serious prognosis and was making progress she remembers “a period of despair. You don’t have a group of medical professionals or parents to reach out to who know your child’s condition and can provide a clear path of what to do and what to expect. You’re forced to travel in the present and what the future brings is a big unknown.

“For so long we were in the dark about things that could help him: that he could have ankle and foot orthotics that would allow him to stand, or that there was a nursery school program for children with 10 ~ summer 2009 ~ bloom

Max attended Bloorview’s integrated kindergarten program, which gave him access to physiotherapy and other services for three years. Katharine felt supported by mothers of other students in the school, and Max identified strongly with fellow students who had cerebral palsy and similar physical issues.

However, once Max left the school, Katharine had trouble accessing services that would have kept him with his former classmates. “Many programs are targeted to children with common diagnoses, like cerebral palsy,” Katharine says. “It’s hard when your child doesn’t fit the criteria.”

It’s not easy to parent a child who doesn’t have a label “but you get used to it,” Katharine says. “You have to satisfy yourself that you’re going to chart your own course, and you have to find people who are flexible.

At some point you have to say enough is enough when it comes to searching for a diagnosis. If your child is making some progress, it’s okay to stop.”

Tips for parents of undiagnosed children Focus on your child’s strengths and relationships with family and friends.

Look for a generic support group for parents of children with special needs where you can network and learn about services.

Have your child seen at a teaching hospital.

Keep copies of your child’s medical records and a diary of your child’s symptoms and development.

Seek out a social worker to support your family.

Remember that even with a diagnosis, every child is unique.

How one mom deals with the unknown In some ways it’s given me peace. I recently read Schuyler’s Monster, about a non-verbal girl and her family. They had a years-long search for a diagnosis and finally got one, and live under the threat that someday she’s likely to suffer from violent grand mal seizures. That sounds like an awful way to live. My advice is to stay flexible and don’t be attached to any particular expectations. Maybe it’s good to assume that not having a diagnosis could be a good thing.

Even kids with solid diagnoses may not live up to the expectations of their condition – which I imagine can also be disappointing. I don’t have any such limitations. Everyday is new and brings its own gifts and challenges. It’s like the ultimate test to become a Buddhist monk – live in the moment!

Jennifer Johanessen, mom to Owen, 10, who has disabilities and no diagnosis bloom ~ summer 2009 ~ 11

parentpicks

Your recommendations for places and activities that are accessible and welcoming to children with disabilities.

Now is the chance to DOUBLE the impact of your support For a limited time, The Holland Family has generously offered to match new funds raised for Bloorview Kids Foundation.

The HOLLAND FAMILY u

Camp Winston

Who: Parent of Evan, 8, neurological disability What: An overnight summer camp for children with learning and neurological disabilities. Swimming, tubing, gross-motor sensory room, drama centre and nature centre.

SUPPORTING BLOORVIEW

Contact Bloorview Kids Foundation at 416-424-3809 for details on how your contribution to childhood disability can be matched.

www.bloorviewkidsfoundation.ca

www.campwinston.com Where: Orillia, Ontario When: Summer 2008 Why: “The staff at Camp Winston ‘get’ my kid in a way that people at school or in the community don’t. They don’t label his behaviour as negative. They find safe, acceptable ways for Evan to express himself and help him feel like he fits in. That increases his confidence and ability to take risks. The program is very structured, with visual schedules. Throughout the year, Camp Winston offers sibling and grandparent weekends and behavioural workshops for parents.” u Send your tips to lkinross@bloorview.ca

> Help us support kids like Anthony 12 ~ summer 2009 ~ bloom

moneymatters

Save for your child’s future Canada’s new Registered Disability Savings Plan is a tax-free vehicle to help parents save for the long-term needs of children with severe disabilities.

“The number one worry of parents who have a child with special needs is ‘what happens when I’m not here to support my child?’” says Brett Langill, a certified financial planner with Brownstone Investment Planning in Toronto. “The RDSP includes good government contributions, tax-deferred savings and is easy to set up, making it the best long-term savings vehicle for this population.”

Langill has two children with disabilities and plans to set up a plan for each. “This is a great opportunity for families, whether they’re in a high-income, low-income or zero-income category,” he says.

‘The RDSP includes good government contributions, tax-deferred savings and is easy to set up, making it the best longterm savings vehicle for this population.’

Anyone who is eligible for the Disability Tax Credit can establish a plan and parents of children under the age of 18 can set up and direct the RDSP on their child’s behalf.

Federal contributions are greatest for families with lower incomes.

For families earning under $75,769 each year, the Canadian Disability Savings Grant will contribute $3 for every $1 contributed on the first $500. It then puts in $2 for every $1 on the next $1,000. “So, if a family puts $1,500 into the plan, the government provides grants of $3,500 on top of that,” Langill says. “For a $1,500 contribution, a family suddenly has $5,000 in the

plan. That’s a big difference. Even if a family can only manage $300, they’ll get three times that from the government grant – $900. The grants are very compelling at this threshold.”

For families earning above $75,769, the government contributes a grant of $1 for every $1 families put in up to $1,000.

And for families with income of less than $21,287, the Canadian Disability Savings Bond puts $1,000 into the plan each year without any family contribution.

Once the child with a disability turns 18, eligibility for grants is determined by that individual’s income only.

The plans have a lifetime limit of $200,000 and government grants and bonds are paid into the plan until the beneficiary turns 49 years old. Any money withdrawn in the first 10 years will result in the grant portion being returned to the government.

“Families of children with disabilities have lots of short-term financial needs, so it’s important that they only pay into the plan what they can leave to grow over the long-term,” Langill says. While the plans are straightforward to set up, Langill says it’s ideal to have a financial planner with expertise in the area of special needs take a look at your overall financial picture.

The Bank of Montreal, RBC and CIBC are national institutions offering the plans to date. “The plan is well thought out and I’m excited about it. I’ll definitely be setting one up for my son, Tomas, who has autism.

And I think I’ll do one for Nydia, my daughter who has cerebral palsy, as well. Regardless of what she’s doing in life, it’s money set aside to help her later on.”

For more information, go to rdsp.com.

bloom ~ summer 2009 ~ 13

Getting from A to B How to teach your child to use public transit

In Bloorview’s Skills for Transition program, life-skills coaches Sarah Keenan and Natalie Timbrell work with teens over 10 months to help them achieve independence goals. A common request is to learn how to use public transportation.

In Grade 9, many youth learn how to get around on their own. However, you’ll want to familiarize your child with the bus and subway long before that. If you don’t have a coaching program in your area, these tips from Sarah and Natalie can help you or a respite worker teach your child.

But first, ask an occupational therapist at your rehab centre to assess whether your child can travel independently. Your child needs to be able to problem-solve if faced with an unexpected change in plans (for example, a bus is taken out of service or your child misses a stop).

14 ~ summer 2009 ~ bloom

lifeskills

1 | Take the bus and subway with your child at an early age.

2 | Teach your child major streets and landmarks, both large and small. For example, “Parliament Hill is in downtown Ottawa. We turn left at the Esso station to get to our house.”

3 | Once your child understands left and right, begin teaching directions. “When we go to Grandma’s house in Moncton, we have to go east.” In time, you can test your children: “Which direction are we going now?”

4 | Teach street safety. Go for a walk and let your child tell you when it’s safe to cross the street.

Teach your child that public spaces – libraries, schools, stores, gas stations – are usually safe places to ask for help.

5 | Have your child pick a destination. It could be school, the mall or a friend’s house. Get a map of your transit system or go online to print out a map.

6 | Look at the map and teach your child how to identify accessible subway stations and bus stops.

These are marked with a symbol.

7 | Map out your route and write out each step.

For example: Take the number 25 bus east to Eglinton Subway.

8 | Go over basic safety rules. For example, if you get lost, who is a safe stranger to ask for help? A transit employee, a police officer, a mother with small children and a store employee are good answers.

Cell phones are a great safety tool. Your child

needs to know to call you or 911 in an emergency.

When taking the subway, your child should carry two quarters because cell phones can’t be used below street level.

9 | Teach your child transit safety features. Sit close to the driver on the bus. Designated waiting areas (DWA) on subway platforms are brightly lit, monitored by closed-circuit television and have an intercom system. Passenger assistance alarm strips can be pushed for help in the subway cars.

MP3 players are distracting and should be left at home.

10 | On your first trip, work together. Prompt your child to pay the fare, use a map or listen to the stations being called out. Some teens like to count stations. Point out who might be a good person to ask for help. Take the route a second time to reinforce the process. On the third trip, let your child navigate and tell you what to do.

11 | If your child makes a mistake, don’t criticize!

“Okay, you missed a stop. This is a great learning opportunity. What are we going to do?” When your child is successful, celebrate! If your child isn’t comfortable with a route after repeated trips, pick a simpler one.

12 | When you feel your child is ready to go solo, put supports in place. You, a respite worker or a friend can wait at the destination. Someone at home should be available to receive calls if your child needs help.

For more information, call 416-425-6220, ext. 3296.

bloom ~ summer 2009 ~ 15

> Photo: Peter Power/Globe and Mail

One dad’s mission to

save respite In 2007, Vito Bigioni learned that two Bloorview respite programs for children with complex needs were being cancelled due to a funding shortfall. Vito’s daughter Emily, 13, had attended the weekend day program and a March Break camp – both creative arts programs – for years.

16 ~ summer 2009 ~ bloom

trailblazer Then he went to his family and business associates to ask them to support a camp he describes as “unlike any other in the world.”

Within three months he’d achieved his five-year goal and set a new target of raising $1 million to keep the March Break camp running forever.

“The foundation gave me the materials and the framework of how to put a campaign together,” he says.

That included a personal fundraising page on the foundation web site; support when presenting to potential donors; and organization of a number of special events, including a gala reception.

“They would draft letters, and then I would personalize them, adding tidbits of our own family’s story because that’s how you connect with donors,” Vito says.

Having a dollar goal is critical, he says. “It has to be realistic. You have to look at how many business ties do I have, how much can I expect from my family?

Setting a target helps to motivate you. Larger donors want to see a long-term impact over years, not a stop-gap solution.”

Getting potential donors to visit the program was key. “You need to get them into the building to see it firsthand.”

Vito says there are countless creative ways to raise funds on a smaller scale to support programs you value.

“When Emily’s classmates heard what we were doing, they wanted to contribute. So on a PA day, one family donated the money to rent an ice rink and we had a Family Skate. Every family paid $20 to skate, and we raised $850 dollars.”

Emily (centre above) uses a wheelchair and doesn’t speak. She’s also an artist who loves to paint and work with clay. The respite programs provided her with a creative, social and safe environment while giving her parents a break from round-the-clock care.

“I’ve seen other programs cancelled but I couldn’t swallow this one,” Vito says. “I can’t get that kind of arts programming in a respite service anywhere.”

So Vito – who owns a construction company – set out to raise money to ensure the March Break camp’s survival.

He had no experience fundraising.

Vito has raised over $750,000 to date, and says the experience has been rewarding for his whole family. “It gives us a sense of giving back for what we’ve received from Bloorview. It’s a way of thanking the staff for running a great program. For Emily’s brother Max, it’s an important life lesson. He sees that we’re helping and that we don’t have to just sit on the sidelines and take whatever is given to us. We can be out in the community and make a difference.”

To find out more about the Emily Bigioni Endowment Fund, visit www.bigioni.giftsofpossibility.ca.

He met with Bloorview Kids Foundation and developed a plan to raise enough money to keep the program running for five years – $250,000. bloom ~ summer 2009 ~ 17

researchhits

Shining a light,

unlocking a mind 18 ~ summer 2009 ~ bloom

Using optical brain imaging, researchers decode preference Bloorview scientists have developed a technique that uses infrared light brain imaging to decode preference – with the goal of ultimately opening the world of choice to children who can’t speak or move.

people, certain parts of their brains are more active when they don’t like something, and in some people they’re more active when they do like something.”

‘This is the first system that decodes preference naturally from spontaneous thoughts.’

In a study published in February in The Journal of Neural Engineering, Bloorview researchers demonstrate the ability to decode a person’s preference for one of two drinks with 80 per cent accuracy by measuring the intensity of near-infrared light absorbed in brain tissue.

“This is the first system that decodes preference naturally from spontaneous thoughts,” says Sheena Luu, the University of Toronto PhD student in biomedical engineering who led the study under the supervision of Tom Chau, Canada Research Chair in pediatric rehab engineering.

Most brain-computer interfaces designed to read thoughts require training. For example, in order to indicate yes to a question, the person needs to do an unrelated mental task – such as singing a song in their head.

The nine adults in Sheena’s study received no training.

Prior to the study they rated eight drinks on a scale of one to five.

Wearing a headband fitted with fibre-optics that emit light into the pre-frontal cortex of the brain, they were shown two drinks on a computer monitor, one after the other, and asked to make a mental decision about which they liked more.

After teaching the computer to recognize the unique pattern of brain activity associated with preference for each subject, the researchers accurately predicted which drink the participants liked best 80 per cent of the time.

“Preference is the basis for everyday decisions,” Sheena says. It begins early in life, when babies point to what they want and toddlers quickly learn the power of the word “no.”

When children with disabilities can’t speak or gesture to control their environment, they may develop a learned helplessness that impedes their development.

In future, Sheena envisions creating a portable, near infrared sensor that rests on the forehead and relies on wireless technology.

Her work is part of Tom Chau’s body-talk research, which involves developing body-machine interfaces to give children who can’t speak or move a way to communicate their intentions through brain waves, breathing patterns and heart rate. The goal is to translate a child’s physiological signals into control of a voice-output device or computer.

Sheena notes that the brain is too complex to ever allow decoding of a person’s random thoughts. “However, if we limit the context – limit the question and available answers, as we have with predicting preference – then mind-reading becomes possible.”

“When your brain is active, the oxygen in your blood increases and depending on the concentration, it absorbs more or less light,” Sheena says. “In some

bloom ~ summer 2009 ~ 19

researchhits

New research funding targets

f

social inclusion Almost $4 million in funding for childhood disability research was announced by the federal government at Bloorview Kids Rehab on April 24.

Teams of Canadian scientists will conduct research to improve the social inclusion and participation of children with severe disabilities and to better understand and support their parents.

The funding was awarded through Bright Futures for Kids with Disabilities, a partnership between the Canadian Institutes of Health Research and Bloorview Children’s Hospital Foundation.

Dr. Patricia McKeever, co-investigator on one of the projects, said the research focus on inclusion reflects a dramatic shift “beyond repairing children to finding ways to enable children with even the

20 ~ summer 2009 ~ bloom

most severe disabilities to enjoy the rights of full citizenship.”

Patricia, who holds the Bloorview Kids Rehab Foundation Chair in Childhood Disability Studies, noted that children with severe disabilities have been neglected in research.

Unique aspects of the Bright Futures research include developing methods and tools that are disability-friendly, child-friendly and give voice to kids who don’t speak; training of graduate and post-doctoral students; and interdisciplinary teams that move beyond traditional health professions to include geographers, engineers, physicists and artists.

“We want to improve children’s built environments – where they learn and live and receive services

– and we want to change social attitudes so that children with disabilities feel they belong and can contribute to all aspects of Canadian life that non-disabled kids take for granted.”

The research focuses on children with severe disabilities – including those with complex medical needs who are non-verbal – children with developmental disabilities, and those in First Nations communities.

“This is a multi-million dollar investment in childhood disability research that brings together Canadian research teams composed of different disciplines to examine the barriers to social inclusion and participation,” says Dr. Colin Macarthur, director of the Bloorview Research Institute.

Read more at www.cihr-irsc.gc.ca

flip 2

sit

What settings engage youth with severe disabilities?

Youth with multiple disabilities who use life-support technologies like ventilators and those who don’t speak face profound social exclusion.

Because of physical barriers, stigma and the absence of a voice, these two groups have limited opportunities to participate in regular activities that help typical teens develop skills, interests and friendships.

Dr. Gillian King of Bloorview received almost $900,000 through the Bright Futures for Kids with Disabilities program to lead a team of international scientists that will study the environmental factors that enhance social inclusion for these groups.

Dr. King and her team will study home, hospital and community environments where youth with severe disabilities are active – from art lessons or wheelchair hockey, to playing video games, reading or hanging out with friends – to determine what features best promote skill development, a sense of belonging and a positive sense of self.

Sitting pretty The children: Preschoolers with a variety of conditions who can’t sit independently.

The challenge: Without a parent supporting them, children with weak or stiff muscles can’t sit to play with toys on the floor or do activities at a table – important tasks in early development.

The solution: Bloorview scientist Steve Ryan and his research team designed Flip2Sit, a booster seat with a high back, thigh straps and leg contouring. One side provides a seat for table activities. The other supports a child’s play on the floor.

Parent feedback: “With Flip2Sit, Karissa (left in photo) can sit up and play by herself or with her sister Breanna, which makes her feel more independent,” says her mom Andrea Schindhelm. “The product is light and portable so I can take it to the park, to a restaurant or to a relative’s house.”

For more information, visit http://www.ottobock.ca/cps/rde/xchg/ob_us_en/hs.xsl/4880.html

bloom ~ summer 2009 ~ 21

researchhits

Science

roundup

This column highlights recent childhood disability study results and ongoing research.

u Does ‘trust hormone’ play a role in treating autism?

u Alternative therapies popular in chronic conditions

Bloorview researchers are conducting a randomized trial to see if Oxytocin improves social functioning in children with autism. Oxytocin is a hormone released during women’s labour and milk let-down, and animal research shows it plays a role in social memory, trust and attachment. Twenty-six children aged eight to 17 will receive Oxytocin nasal spray or a placebo over 12 weeks. Preliminary studies of the hormone in adults with autism showed improvements in social cognition and repetitive behaviours. “This is promising,” says Dr. Evdokia Anagnostou, clinician scientist at Bloorview and principal investigator. Results are expected in two years.

Complementary and alternative medicine is used in over 50 per cent of children with chronic, recurrent or incurable conditions, according to a report by the American Academy of Pediatrics published in Pediatrics. Common types of therapies in children include multivitamins, herbs and other dietary supplements, chiropractic care, massage, prayer, progressive relaxation exercises, meditation, biofeedback, hypnosis and acupuncture. The report found 66 per cent of caregivers did not tell their child’s doctor about alternative treatments. It encourages clinicians to stay abreast of the field and routinely ask families about what they are using.

Pediatrics: 2008; 122:1374-1386

22 ~ summer 2009 ~ bloom

u Have Wii, will walk Scientists at Bloorview and the University of Toronto are studying the therapeutic value of Nintendo’s Wii Fit for children learning to walk with a prosthetic leg. Children with above- and below-knee amputations need to distribute weight evenly over both legs to get a smooth gait and prevent future physical problems. But because the feel of their prosthetic leg is new, they often compensate by relying more heavily on their intact leg.

Researchers hope that using Wii Fit as a home therapy will motivate them to move in a way that promotes full use of their prosthetic leg. The study began by testing 10 able-bodied children using Wii Fit, to see which movements its games elicit. Based on these findings, researchers are designing home-therapy programs for six children aged six to 16 with amputations. Their balance and functioning will be tested before they begin use, and then at four weeks and 12 weeks.

bloom ~ summer 2009 ~ 23

talkback

A different approach A behaviour analyst responds to a BLOOM article about self-injury

BY DR. LOUISE LAROSE It goes without saying that children with developmental disabilities deserve compassion.

Felicia Jervis, in a recent BLOOM article (Summer 2008), outlined her approach to dealing with self-injury in children with developmental disabilities. I’d like to address this approach and suggest other ways to reduce self-harming behaviour.

I agree with Felicia that whenever children are hurting themselves, the last thing we want to do is punish them. When a child doesn’t speak and has no functional means of communication, self-harm can be the only way the child knows to bring attention to a

24 ~ summer 2009 ~ bloom

problem. Children with developmental disabilities hurt themselves for a reason, so the first thing we need to do is figure out that reason.

Where I part ways with Felicia is in responding to selfinjury with food, drinks, hugging or holding the child.

We don’t want the child to associate hurting themselves with getting something desirable, like a hug.

We don’t want self-harm to become the request for something nice. There is a lot of good research to show that children will continue to self-injure when something positive follows the behaviour. That’s why it’s so important to give your child affection, comfort and love when they are not self-harming.

But doing this alone may not reduce the frequency of the problem. We usually have to teach the child a different way to express needs. So, if a child doesn’t want to do something, we teach him or her to exchange a picture or use a hand sign to indicate ‘stop.’

The emphasis here is on teaching, not punishing.

Punishment only suppresses behaviour.

As Felicia wrote, it’s important for a parent to be quiet, calm and still when faced with self-harm. If a parent is unsure of what a child is trying to communicate, the parent needs to ensure the child’s safety (e.g., putting a pillow under their head if they’re banging it on the floor). It’s important to not give undue attention to the problem behaviour, which can reinforce it.

There is a lot of good research to show that children will continue to self-injure when something positive follows the behaviour. That’s why it’s so important to give your child affection, comfort and love when they are not self-harming.

Research shows that there are two common causes of self-injury in children with developmental disabilities: wanting to escape something and wanting something.

Why might families have a hard time finding someone to provide sound behaviour interventions? There are not a lot of well-trained behaviour therapists out there.

And there are too many people who revert to punishment as the first line of defence. The standards of practice for applied behaviour analysts state that we should always consider positive reinforcement first and teach alternative behaviours.

In recent years, many agencies have had extensive training in a program from Australia called Positive Parenting Program, or Triple P (www.triplep.net). It’s a great program where parents meet individually with a therapist or in groups to learn non-punitive, positive ways of dealing with a range of problem behaviours, including self-injury.

Dr. LaRose is a board-certified behaviour analyst who is a consulting psychologist with the pervasive developmental disorders program at the Child and Parent Resource Institute in London, Ont. To comment on her piece, please e-mail lkinross@bloorview.ca

What to ask When looking for a therapist to treat self-injury in your child, Dr. LaRose suggests you ask these questions: 1. Are you a certified behaviour analyst?

2. If not, are you supervised by someone with extensive behaviour experience? The certifying board in the United States recommends that complex cases be supervised by a therapist with a PhD. 3. How do you assess self-injury? You want to hear that they will: observe firsthand the behaviour, collect data, have you or someone who knows your child well complete a questionnaire, and possibly do an interview.

4. How do you interpret self-harming behaviour? The most effective techniques for treating self-injury are preventative. You want to hear that the therapist will figure out which situations trigger your child’s problem behaviour and maintain it. Sound assessment techniques don’t assume that the behaviour is fuelled by vague internal states like anxiety, because we don’t really know how a child is feeling. We only know what they’re doing.

5. What are your typical recommendations for treating self-harm? If punishment, restraints and seclusion are included, look elsewhere!

Felicia Jervis replies: I welcome a dialogue with Louise LaRose. Regardless of whether self-injury intensifies initially, children always need unconditional love and acceptance, best expressed through warm hugs, reassuring words, soothing drinks and food. It is unfortunate that these vital expressions of unconditional love are appropriated as reinforcers for instructional purposes such as teaching alternate communication skills. It is sad that in the name of therapy or education, parents are sometimes advised to withhold affection, comfort and love when children are hurting the most.

bloom ~ summer 2009 ~ 25

clinicalresearch

Bridging science + medicine ‘There has to be a constant back and forth – a marriage’

Dr. Evdokia Anagnostou is a child neurologist and scientist recruited to Bloorview from the Mount Sinai School of Medicine in New York to develop a clinical research program in autism.

Evdokia’s clinician scientist position is a new one that reflects the hospital’s goal to better bridge the worlds of research and care.

What brought you to Bloorview?

Dr. Anagnostou: There were a number of pluses to building a clinical research lab here: access to children with autism; our link with SickKids, which allows me to collaborate with geneticists and basic scientists; and a very well organized research institute with huge potential to grow. I like the philosophy that disability is where you start and not where you end.

It doesn’t become who you are, but is just one aspect of you. That attitude is very promising for children with autism.

26 ~ summer 2009 ~ bloom

One part of your research focuses on testing alternative compounds like fish oil in the treatment of autism. Why is this important?

Dr. Anagnostou: There are limited medications available to children with autism. As a result, parents and physicians have started using alternative compounds without any evidence that they are safe or effective. We need to test the compounds scientifically. And because we’ll be treating many people with autism over their lifetime, if there are natural substances that have better safety profiles than the current drugs we’re using, we need to know that.

What are the advantages of being a clinician scientist?

Dr. Anagnostou: The risk, if you’re just a researcher, is that you get caught up in asking questions you think you can answer, instead of what’s relevant and will have

impact for families living with autism. Seeing children keeps me grounded in what needs to be asked. Research keeps us up to date on the newest treatments and findings. There has to be a constant back and forth – a marriage – between the clinical and the research in order to provide excellent care.

How do you bring a sense of wonder to your work?

Dr. Anagnostou: My patients bring me a sense of wonder.

What’s special about children with autism is that their brain is wired differently, so they have an alternative view of the world that challenges our perceptions. They have the ability to see things from a completely different view. There are a number of books by people with Asperger syndrome and autism that challenge our ideas of what’s important and what’s not, what competence is, and what a contributory life is.

www.bestbuddies.ca Promotes one-to-one friendships between teens and adults with intellectual disabilities and high school and university students.

BOOKS

WEBSITES

noteworthy

This Lovely Life: A Memoir of Premature Motherhood, Vicki Forman, 2009 When My Worries Get Too Big! A Relaxation Book for Children Who Live with Anxiety, Kari Dunn Buron, 2006

www.ilr.cornell.edu/edi/disabilitystatistics/links.cfm Cornell University Disability Statistics

The Special Needs Acceptance Book: Being a Friend to Someone with Special Needs, Ellen Sabin, 2007 (for ages 9-12)

❁ According to the Canadian Association for Community Living’s 2007 National Report Card on Inclusion, only 33 per cent of Canadians support inclusive education of children with intellectual disabilities.

Parenting Across the Autism Spectrum, Maureen Morrell, Ann Palmer, 2006

❁ A 2004 survey funded by the U.S. Administration on Aging found there are about 1.4 million child caregivers aged eight to 18 in the U.S. About 10 per cent care for a sibling who has a disability or illness.

Reconstructing Motherhood and Disability in the Age of “Perfect” Babies, Gail Landsman, 2008

❁ “It appears highly likely that children with disabilities comprise one of the most socially excluded groups in all societies today. It has been estimated that 85 per cent of the world’s disabled children under 15 years of age live in developing countries...the vast majority of these children receive no education, are absent in school data sets, and invisible on the national policy agenda.”

Educating Children with Disabilities in Developing Countries: The Role of Data Sets, Robson, Colin and Evans, Peter, 2003

Parenting an Adult with Disabilities or Special Needs, Peggy Lou Morgan, 2009 Special Gifts, Arlene Schusteff, 2007 ARTICLES

FACTS

The Spirit Catches You and You Fall Down, Anne Fadiman, 1998

Respecting Children with Disabilities – and Their Parents, Erik Parens, The Hastings Center Report: Jan/Feb 2009; 39, 1; page 22* Cosmetic Surgery in Children with Cognitive Disabilities: Who Benefits? Who Decides? Douglas J Opel; Benjamin S Wilfond, The Hastings Center Report; Jan/Feb 2009; 39, 1; pg. 19* *A copy of these articles can be obtained by calling Bloorview’s library (416-425-6220, ext.

3517) or visiting your local library.

bloom ~ summer 2009 ~ 27

I believe in a world of possibility

Bloorview Kids Rehab: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.bloorview.ca