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ABOUT US
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Stories
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. The engineer of childhood wonder How do you train a robot to interpret what a child in a wheelchair wants to play, allowing the child to go where his wheelchair won’t, pick up out-of-reach toys and see through the robot ’s eye? It’s the kind of question that sparks the technological inventions of Tom Chau, a biomedical engineer and scientist in the Bloorview Research Institute who received the 2005 Young Engineer award from the Professional Engineers of Ontario. Tom, 35, trains computer
chips to adapt to the unique needs of children with disabilities - interpreting
their desires to communicate when they can’t
speak or make music when they can’t move their fingers. With his virtual instrument software, children unable to manipulate piano keys can still learn childhood favourites like Twinkle, Twinkle Little Star. Sitting in front of a large screen that superimposes his image with a video camera, Kajan waves his hand over large coloured balls, each sounding a different note. “Young children learn from getting feedback from their environment,” Tom says. “Children with severe disabilities can’t do that and may become passive, feeling that nothing they do has an effect.” A new project - a small robot controlled with a joystick or headswitch - aims to give kids with limited movement the ability to fish playthings from inside a closet or see underneath their bed.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Chat club gives children a voice Instead of whining for her Dad to come see her homework, Alexandra McMaster turned up the volume on her voice output device and hit a button repeatedly: “Dad, Dad, Dad ” boomed the machine. “It was a huge breakthrough,” recalls Libby McMaster, mom to 16-year-old
Alexandra, who doesn’t speak. “She’s always used her (voice
technology) at school, but she never used it in social situations.” “We found that many of our clients who were excellent communicators with their family and therapists didn’t take their devices when they went out,” says Gail Teachman, occupational therapist at Bloorview and a team member from Bloorview and Grandview treatment centres running the Durham Region program. Families often had negative experiences with people who were fearful of interacting with a child using technology or weren’t patient enough to wait for the child’s response. “Because of these barriers, many families act on the assumption that they’ll be there and speak for the child,” Gail says. “We wanted to challenge these barriers so that children can talk not just with familiar partners ? but with the bus driver or to ask a question in a store. Being able to speak for yourself and expand your social networks is an important skill in developing independence.” The Chat Club - which brings together eight children aged six to 16 - includes outings such as a cooking class at Loblaws, shopping at the mall, Halloween and a movie-trivia night. In advance, a communications-disorders assistant visits a family's home to help program vocabulary that fits the upcoming activity so that the child can ask questions and make relevant comments. For example, assistants visited homes to prepare a meal with the child
and parent so that they could come up with vocabulary needed for making
pizzas
and smoothies at the Loblaws cooking class. More experienced technology users like Alex were paired with younger children just trying devices for the first time. “Typically these kids are in a school class where they’re the one-off kid with a device,” Gail notes. “They’re often not valued as having something to contribute. We wanted them to hear the message that they have the same capacity as any other child to play a leadership role.” For example, on one outing when a child began to cry because he wanted to go home, an older boy was able to comfort him by putting together and activating this sentence on his device: “It’s okay, your Dad will be back later.” For many participants, the club was their first opportunity to see other kids communicate the way they do. “Being with other kids who are using devices was a huge motivation for Alex,” Libby says. “When we used to ask her to take her device somewhere we were going as a family she wouldn’t take it because no one else was using one.” The Chat Club is labour-intensive because of the amount of in-home programming and support required. It was made possible with a $12,000 grant from the Bloorview Kids Rehab Foundation. Gail says she’s hopeful the program will lead to other clubs where kids who use voice devices can meet, as well as better inclusiveness in existing programs.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. SpeakQ unlocks the writer in Adam
“School was torture for him because he read at an advanced level and was orally gifted, but he couldn’t write what he knew,” recalls his mom Jan. “Because he’s brilliant, nobody could understand why.” Adam tests in the gifted range but also has a learning disability that affects his ability to discriminate sounds, match them to letters and spell. As a result, written work took triple the time it should and lacked the complex vocabulary and sentence structure of his speech. SpeakQ - designed by Bloorview with the Education Development Center in Newton, Mass. and integrated with powerful word-prediction software - “closes the gap,” Jan says. “When students like Adam get stuck and don’t know how to spell a word or get an idea down, they simply say it and SpeakQ displays it and gives them immediate speech feedback so they can identify errors,” says Fraser Shein, the engineer who led the project at Canada’s largest children’s rehabilitation hospital. “There’s nothing on the market that combines speech recognition and word prediction as a single product in this way,” says Bob Follansbee, project director at the Education Development Center, which manages 335 projects that advance learning in 50 countries. With SpeakQ, students speak a word or phrase and see it displayed in a box with four alternate words or phrases that the software predicts. They can click on each word or phrase to hear it spoken before selecting the correct one and inserting it into their document. The product is integrated with word-prediction software called WordQ - also developed at Bloorview - that predicts the most likely words after one to three letters of a word are typed, based on vocabulary tailored to age groups and the writing style of the user. “It’s most likely that students will type what they can and then when they get stuck, simply say the words and rely on speech recognition,” Fraser says. The software also has a function where students can speak continuously and have their words directly typed into their document. Adam began using WordQ five years ago in Grade 4. “It removed so many obstacles to his learning,” Jan recalls. “It allowed him to expand on his written vocabulary because he wasn’t aftaid of not being able to spell big words. Finally his writing could keep up with his intellect.” Adam was involved in beta trials of SpeakQ and his mom says the biggest benefit of the technology will be increased writing speed. “He still sometimes has trouble starting words with the word-prediction feature, but now he can just say the word and it will get it right for him,” Jan says. SpeakQ was designed to be simple - unlike products targeted to professionals that require a high degree of literacy - and will be marketed initially to high school and university students. SpeakQ works with any software application - from word processing to e-mail - and is bundled with companion software WordQ for $425. Other key players in designing the product at Bloorview were Tom Nantais, a senior software engineer and programmer; Rose Nishiyama, a human factors designer; and Shae Birch, a software programmer. “Before this technology, Adam’s school only ever saw him as a learning-disabled child with a pile of deficits,” says his dad Geoff. “Now they see a kid with all these strengths.” For more information on SpeakQ, please visit www.wordq.com or contact Quillsoft, the manufacturer, at 416-698-0111, ext. 221.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Healing garden to touch children of Asian tsunami
Spiral Garden travelled to the West Bank last year to assess a potential arts garden site with the IICRD and has a successful sister program called the Butterfly Peace Garden in Batticaloa, Sri Lanka. The Butterfly Garden brings together children who have experienced the violence of a civil war to promote reconciliation.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Botox study yields cost-saving results First research to evaluate dose when treating arm spasticity finds less is more By relaxing stiff muscles, Botox lets children with cerebral palsy move more freely and better use their limbs: arms pulled by tight muscles into chests can extend and clenched hands can open up. But there has always been a delicate trade-off when treating tiny arm and hand muscles, notes Dr. Darcy Fehlings, who runs the Botox clinic at Bloorview and has conducted some of the earliest research into this pediatric use. “In addition to reducing stiffness, Botox creates muscle weakness in the muscles injected,” Darcy says. “If we create too much weakness, we weaken the child’s grip.” Now, thanks to a groundbreaking study at Bloorview - the first randomized trial to evaluate the optimum dose for improving function - clinicians will no longer guess at a wide range of recommended doses, a new standard will be adopted by pediatric hospitals offering the treatment internationally and funders will see a significant cost savings. That’s because Darcy’s study found that children’s functional abilities improved equally whether they received a high dose of Botox or half that amount, probably because “the low dose minimized weakness in the muscles,” Darcy says. Two groups of children with spasticity in their arms were treated with Botox injections at Bloorview. One group of 21 received the maximum dose recommended clinically, while the other group of 18 received half that dose. The study was “double-blind” in that parents and researchers didn’t know which children had been assigned to which group. The children were assessed by occupational therapists on the quality of their hand movements - including their ability to grasp and release, weight-bear and isolate muscle movements - before the injections and at one and three months following. In addition, they set goals with their parents for activities they wanted to see improvement in, such as tying shoelaces or swinging a bat with two hands. Their progress in attaining these goals was rated at one and three months post injections. Parents also filled out a questionnaire on day-to-day activities such as eating, bathing and dressing. The study found that
children’s functional abilities improved with both
doses, but there was no difference in gains between the two. “Since we’re
currently using the higher dose in our clinical practice, this study showed
us that we could use half the amount of Botox at a significant cost reduction,
but with the same positive effects,” says Bloorview’s
Dr. Anne Kawamura, one of the study’s A child whose dose cost about $800 before can now be treated for about $400. Next steps for researchers are to study how to better identify in advance which kids are most likely to benefit.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Accessible
wetsuit keeps kids warm, promotes integration
Aquatics co-ordinator Louise Kublick's goal is to get children swimming in their community pools and integrating with other kids. Recognizing the cold water was a deterrent and it was unrealistic to expect community pools to crank the heat, she realized she would have to design something to raise kids' body temperatures. Louise is the brainchild behind an accessible two-piece wetsuit for children who have special needs. Unlike traditional wetsuits, this one unzips to lie flat on the floor so a child with limited mobility can be zipped into the suit. Louise explains some children have brittle bones, no rigidity in their muscles and it hurts or it's impossible for them to wriggle and twist into the sleeves or legs of the suit. "Part of my goal is to see kids swim in their own community," says Louise. In Ontario, there's emphasis on the water from swimming at the cottage to a neighbourhood pool party, she says. "Water is fabulous for its physical benefits. Kids with disabilities who don't learn to swim are left out of those physical opportunities and that social opportunity. "
Louise's design was licensed to Sprint Aquatics in California, which manufactures and sells it worldwide. Two years ago when she came up with the idea, Louise enlisted the help of a seamstress who works with neoprene to make the model wetsuit. She then approached Canadian manufacturers but they didn't express any interest in her idea, she says. Then the phone call came from Spring Aquatics after the company saw an article about her invention in a cross-disability lifestyle magazine. It was a "very exciting" moment for Louise. She bought the patent and receives royalties but Louise says that wasn't why she invented the suit. Her motive was to break down the barriers children encountered when it came to swimming in their community pools. The mother of the Aurora boy purchased her son the wetsuit and Louise spent a full hour in his community pool with him recently. The wetsuit costs between $80 and $85. Click here for ordering information.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Bloorview hands out
Bravo! awards Bloorview Kids Rehab is saying ‘Bravo!’ to staff members’ innovation and creativity by handing out awards of excellence. Individuals and teams of employees at the Toronto children’s treatment centre received recognition recently for their new inventions or programs that help improve quality of life for children with disabilities. Sheila Jarvis, president and CEO, says the Bravo! Awards Showcase was designed to promote creativity and recognize innovation at Bloorview. “Our vision and mission at Bloorview Kids Rehab is to support staff, children and families in being creative and innovative when we think about the challenges of disability,” says Sheila. She notes there are some employees who are “quite exceptionally creative. We wanted to recognize this in a meaningful sort of way.” Five awards were presented to the individual and team innovators at a ceremony last week. Staff also received plaques, prizes and the opportunity to have their invention or program showcased within the centre and beyond. There were 11 applications for the first-time awards and an external panel selected the winners. The winners are:
All staff members at the centre were encouraged to enter the awards and demonstrate their “think outside the box” mentality. “We believe that opportunities exist for all staff within Bloorview Kids Rehab to demonstrate innovative work practices and activities, new thinking and new ways of doing things. We would like to support innovation developed by staff that has an impact on the quality of life for our clients and families, as well as the work environment of our staff and volunteers. Staff in each area is responsible for living our vision to ‘defy disability.’” Sheila says in order to be eligible to receive the award, employees had to have tangible examples of how the innovation impacted the children and families the centre serves. “We’re very impressed,” says Sheila about the level of innovation. “I think others (outside the centre) in the field of rehab will be too.”
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Flora the clown has the magic touch ‘I’ve always felt the clown being out of place in the hospital and being vulnerable and alone mirrors the child’
“We offer the children permission to play and laugh, which is healing in its own way, a supportive relationship and empowerment,” says Camilla Gryski, also known as Flora. “We create a safe play space within the hospital that the child controls. In that little world, the child can go anywhere, make up stories, be a king or a princess. It’s a respite from the medical intervention that’s going on.” Biravina is being followed by Flora at Bloorview through a Hospital for Sick Children program. But Bloorview is about to welcome its own clown - funded by Therapeutic Clowns Canada. The clown will initially work on Unit 3. “Because the children on that unit are more dependent on technology, they spend more time in their rooms and we think it’s a great idea to have a clown come to them,” says Marusia Heney, child life specialist. Camilla notes that the clown’s greatest strength is her vulnerability. Appearing somewhat incompetent and getting into trouble “allows the child to take care of the clown,” she says. “I’ve always felt the clown being out of place in the hospital and being vulnerable and alone mirrors the child, who, even though supported by family, has to cope with their illness (or disability) alone. Within that metaphor, the clown shows that it’s okay not to know things. It gives the child an opportunity to be the one who knows and takes care of the clown.” To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.
Grandson’s voice is ‘the best Christmas gift ever’ Technology allows Kayle to express thoughts his family never knew he had
Kayle, 13, uses the keypad of his voice output device to tell grandfather Dave where he wants to go: the Rainforest caf é and Disney Store. Margaret has worked with Kayle since he started school as a frustrated little boy with huge behaviour problems, Lynne says. “He talked until he was two-and-a-half and then he lost all speech and became extremely aggressive because he couldn ’t communicate.” Over the years, Kayle communicated by gesturing and pointing, using picture symbols or writing down what he wanted. But his writing was hard to read, he never went beyond the use of nouns and he tended to perseverate - getting stuck on one topic, such as his love of Disney movies. Over the past three years, his communication and writing aids team has been searching for a voice output device that would give him the structure and tools for richer communication. The palmtop - a device
that looks like a personal digital assistant and weighs just over a pound
- “gives him access to a keyboard as well as picture
symbols representing whole phrases,” Margaret says. A word-prediction function means that after typing in the first three letters of a word Kayle is presented with the most likely words and clicks on one - reducing the number of key strokes he has to make and speeding his verbal output. But whole phrases that
are programmed into the device - such as “What
are we doing tomorrow?” “I want a hamburger” and “How
much does it cost?” - give him the structure and speed to be able to
communicate more complex messages, Margaret says. “It encourages him
to tell us more than just the noun. The thought is there and by having it visually
available, he has a means of expressing it.” Lynne says he’s begun initiating conversations he never had before. For example, he asks for specific CDs he wants in a music store, orders his favourite meals at Harvey’s and McDonalds, tells his teacher what he’s looking for in a cupboard and requests a Pepsi from the lunchroom supervisor. “Normally he would go to school and not drink or eat at all,” Lynne
says. “He wouldn’t even think to ask for a drink in that setting.
These are things we never would have known. The other night I was making supper
and got out green beans and Kayle went to his supper page and told me he wanted
corn instead.” Other benefits of the device are that it’s light, easy to carry and has increased Kayle’s independence with reading and spelling, Lynne says. “If he’s typing something phonetically he can hit the voice and tell right away whether he spelled it correctly or not. If he didn’t, he’ll go back and try again. He loves to read books and he’s started to type in words that he doesn’t know instead of calling us to come and tell him what they say.” Kayle’s grandparents - who are raising him - have been key players in Kayle’s blossoming communication.They set up situations where he has to use the palmtop, wait and prompt him and regularly program new vocabulary to keep up with his life. “It’s important for families to hear that they’re a big part of these success stories,” says Gail Teachman, the occupational therapist on his team. To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Students take top engineering scholarships Two biomedical engineering
doctoral students at Bloorview have received Canada Graduate
Scholarships worth $70,000 each over
two years from the National Sciences and Engineering Research Council of Canada.
Elaine
Biddiss is studying artificial muscles - plastics that change shape
with electricity - in the hopes of developing a new prosthetic hand
with moving fingers. Scott Young is studying patterns that occur in repetitive motor tasks such as walking or tapping a finger. “By understanding how movement is organized and controlled by the body, we can develop new approaches to clinical interventions for children who have difficulty with walking or other motor tasks,” Scott says. The NSERC scholarships are designed to nurture and develop research leaders who will boost Canada’s international ranking in research and development. Elaine and Scott, both doctoral students at the University of Toronto, are supervised by Bloorview’s Tom Chau, a scientist and theme leader of innovation research at the Bloorview Research Institute. He is also Canada Research Chair in pediatric rehabilitation engineering. “The Canada Graduate
Scholarships are among the highest of all accolades for doctoral students
and no previous graduate student at Bloorview
has ever held this prestigious award,” Tom says. To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.
But on Canada Day - while playing in a swimming pool - the unthinkable happened. Nicole sustained a massive stroke that paralyzed her right side and stripped her of language. “The doctors can’t say why, but they believe a viral infection she had six months earlier attacked an artery in her brain,” Michael says. For three weeks, Nicole
was unable to utter a word. When she was transferred to Bloorview
Kids Rehab for rehabilitation, she arrived
in a wheelchair - able to speak a couple of single words that began
with D. One of those words was Dad. Nicole was diagnosed with expressive aphasia, “a language disorder typically seen in adults with stroke,” says Bloorview speech-language pathologist Kim Bradley. “Nicole’s ability to think is intact, but her ability to use language to express thoughts is affected. Nicole understands an idea, but doesn’t have the words or grammar to code the idea.” Kim began therapy by getting Nicole to focus on a familiar object - an animal or favourite book - and encouraging her to name it. When Nicole got stuck, Kim would give her the first sound of the word, describe the object, or encourage her to produce any associated words, such as its colour. “Words are stored by sound and meaning so the more words she can produce in the same semantic field, the closer she will get to the word she wants,” Kim says. After a week Nicole was able to produce single nouns and soon after to combine them with a verb. But problems with grammar, tenses, word order and the use of small words - such as in, on and is - persist. “She’ll get the big part of a sentence - the noun and verb - because they carry a lot of meaning, but the little words and word endings have less meaning” and don’t come automatically, Kim says. When Nicole struggles to construct a sentence, Kim encourages her to produce the main words, then put together the other pieces, much like a puzzle. Word order is also an issue, and was evident during an exercise when Nicole had to pull two words out of a box and combine them into a sentence. When Nicole picked “want” and pen,” her response was “I please want a pen” instead of “I want a pen please.” Other times when the two words were presented in one order, she couldn’t produce a response until they were physically switched. Before working on grammar, Kim had to assess - by getting Nicole to point at pictures - whether she understood the concepts of past, present and future. She did. And it’s that huge gap between her cognitive ability and expressive language that is most frustrating for Nicole, who was highly verbal before her stroke, her father says. The elaborate, adult-like conversations she was known for have been replaced with shorter, simpler, sometimes choppy sentences. An advantage Nicole has over adults with aphasia is that her young brain is more plastic and “open to learning new strategies,” Kim says. Kim describes Nicole’s progress in three months as remarkable. “She’s dogged and bright and works her butt off.” She’s also blessed with a sense of humour. When asked to compare her abilities now to when she arrived with no speech, Nicole’s face lights up. “Chatterbox,” she says. To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Head start levels the playing field
Most of the school’s students have complex issues that include physical disability and communication problems and spend one to three years in the program before moving to their community schools. “We integrate a rigorous, full-day curriculum with occupational and physical therapy and language and communication intervention so that when students leave for community schools they have a package of academic and life skills that will give them an equal kick at the can,” Linda says. “We want them to take strong leadership positions in school as opposed to the unfortunate stereotype that children with special needs are passive recipients of education and followers.” Therapy is integrated into the classroom and the program’s success relies on the ability of staff - both educational and therapeutic - to work as a team. “They have to establish common goals for a child, identify blocks in learning and revise their plans together,” Linda says. A child’s team may include an educational assistant, teacher, therapists in speech, occupational and physical therapy, as well as professionals in the use of communication and writing technologies and the hospital’s feeding and seating clinics. Much of the learning revolves around structured play and social interaction, Linda says. Students also benefit from their shared experiences with disability. “It can’t help but be reassuring for them to know that they’re not alone, that they’re not unique or different in a negative way.” A planned part of the curriculum includes disability awareness. “Throughout their time here they come to have an understanding of their disability, their strengths and skills in coping with it and talking about it, and gain a solid grounding in self-esteem,” Linda says. During their last year of school, the children participate in a specific unit on self-advocacy. “They anticipate the questions they may receive when they go out to their community schools and practise their responses,” Linda says. “You can’t underestimate how important this is, because the truth is that most people still have a measure of discomfort when they see someone who is clearly disabled. People tend to avoid them or be overly sincere. Few are able to be unequivocally ‘normal’ and respond as they would when meeting anyone else. Our students might be on their way to finally eradicating that stigma, because of the self-esteem and confidence they’ll have internalized during their time here. They’re not going to see themselves as less than. They’ll be so clearly comfortable with themselves that that stigma will just end.” To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.
That changed in Grade 4 when Luke received WordQ, a word-prediction software developed at Bloorview Kids Rehab. WordQ predicts the most likely words after Luke types the first one to three letters - decreasing the key strokes required by 50 per cent and giving Luke spoken feedback so he can identify errors. “Projects that used to take me hours to type can be done in much less time and I can do it all on my own,” Luke says proudly. WordQ is targeted to children and adults who have learning or physical problems that make writing difficult and has been purchased by school boards, rehabilitation hospitals and universities across North America. By helping students with the mechanical aspects of writing, it allows them to get past those basics so they can be more functional and creative in their writing,” says Fraser Shein, the Bloorview engineer who developed the product. Since WordQ’s launch in 2001, Bloorview’s writing aids service has prescribed the device to about 100 children each year. The software predicts words based on vocabulary tailored to specific age and language groups and adapts to the writing style of the user. “Now Luke can put down on paper the kind of wonderful, funny response that
he could only express verbally before,” says his mother Ruth, a special
education resource teacher. To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. It’s this firsthand experience that resonates with donors, Dougal says, as he helps the teaching hospital kick off a $150-million investment in children’s rehab with the construction of a new building and the launch of a childhood disability research institute. Next month, a campaign to raise $45 million in the private sector will be launched by Bloorview Kids Rehab Foundation. Under the theme Help us defy disability, “we’re raising money to move from being a provincial centre of excellence to an international one that empowers and enables children,” says Valerie McMurtry, foundation president. The fundraising - which covers building, program and research costs - began in 2002, and the foundation expects to hit its target next year. “We’ve raised $32 million, so we’re 70 per cent of the way there,” Valerie says. “That tells the community that we’re in the home stretch and we need their support to get to the finish line.” The new 343,000 sq. ft. children’s rehab hospital - which will bring two current sites under one roof - exceeds most Americans with Disabilities Act accessibility standards and has been designed, according to lead architect Terry Montgomery, to create “the atmosphere of a retreat within the city. For the child transferred here from an acute-care hospital, we wanted to create a restful, welcoming atmosphere that connects the building with the surrounding ravine, has lots of natural light and is made up of a series of places that have character and personality.” The Ontario government has contributed $60.5 million to the
$100-million building. To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. A restful retreat
It will give the hospital a new identity because it’s a unique shape that has no precedent. The north-south block has a gently curved, sloping roof that emerged from our negotiations with the neighbours, who wanted us to build low at the front and high at the back. For me, what’s beautiful about this shape is that it’s like a large, south-facing hillside that’s habitable, because within the slope there are terraced gardens dug out of the building, with trellises and landscape that create outdoor areas for programs. What makes the building remarkable? In addition to its unique form, the design includes a varied palette of materials inside and out. The ground floor is brick - which is a dark, earthen material - and the higher, sloped part is zinc, a soft metal that will take on different colours with changes in weather, giving it an ephemeral quality. We chose that material to play down the building’s height so that the shape would tend to blend in with the colour of the sky. Another thing that’s remarkable is that the whole interior makes a series of direct connections with the adjacent ravine. On entering the building you have a double-height view of the trees. Most people think of hospitals as endless corridors, antiseptic rooms and lighting that it too bright. Our whole idea was to build a series of evocative places that take on meaning and quality with time and use. Form and texture within the building create a kind of interior geography for wayfinding. For example, the elevator core is clad in wood at every level, so it’s easily distinguished. Finally, there was a new level of consciousness about accessibility in the design. Consultants reviewed our drawings with only that in mind. We spent a day ourselves maneouvering around the existing hospital in wheelchairs. We took the Americans with Disabilities Act standards as a baseline and went through on a case-by-case basis, allowing for more generous dimensions in many areas that involve transfers. Our elevators have access from the back and front. What atmosphere were you trying to create for clients and families? We wanted to take a different approach from many hospitals, which have large atriums and a commercial, mall-type atmosphere. We were inspired by the Children’s Inn in Bethesda, MD. We wanted to create a restful, welcoming atmosphere that connects the building with the surrounding ravine, has lots of natural light and is made up of a series of places that have character and personality. We wanted to make sure that families weren’t overwhelmed on entering, but at the same time, we wanted major places like the family resource centre, education centre, cafeteria and swimming pool to be presented in a comfortable, natural sequence. How will the design make it easier for families to get around? Most rehab hospitals are built on one floor with too many long corridors. We thought stacking the programs one above the other and relying on a number of ample and easily-accessed elevators would knit everything into close proximity and allow everyone to share the view of the ravine. To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Tapping every child's promise
Take Kajan, an 11-year-old with a spinal-cord disorder that curls his fingers into his palms. His musical affinity was untapped until biomedical engineer Tom Chau invented a software that allows him to wave his hands across a sequence of coloured balls on a screen - producing a different piano note with each graceful movement. Meanwhile, Dr. Doug
Biggar is flying in from an international conference for parents of children
with Duchenne muscular dystrophy. The pediatrician
and
professor, known in clinic for his delightful bedside manner and bowties,
was reporting
on his pioneering study of the steriod deflazacort. He’s shown it to cut
the risk of heart disease in teens with Duchenne’s by 75 per cent, while
dramatically preserving their mobility, breathing and spine function. “Our aim is to generate knowledge that will enable children with disabilities - not just in terms of function - but also in terms of integration and participation and quality of life,” says Dr. Colin Macarthur, the institute’s director. “Our goal is to be the premier children’s rehab research institute worldwide. Whether it’s a drug or a device, we want to have an international reach.” Research will be driven by the needs of children and their families “and have immediate application,” Colin says. It will be multidisciplinary,
bringing together scientists in medicine, nursing, rehab therapies, psychology,
social work, engineering, dentistry,
teaching,
epidemiology and biostatistics. Bloorview’s researchers have already fostered numerous treatments and technologies that benefit children worldwide. But they never had a stable funding base for scientists’ salaries. The Bloorview Research Institute will remedy this problem, “providing stable and sustained funding to allow for growth,” Colin says. A first priority is to “bring in summer students, graduate students, post-doctoral fellows and junior faculty who we can train as outstanding scientists and inspire to go out and work in the field of pediatric rehabilitation internationally,” Colin says. Bloorview is the only teaching hospital for children’s rehabilitation in Canada - affiliated with the University of Toronto - and already provides hands-on clinical and research training to about 300 students from diverse health professions each year. To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. How come you walk funnyFilm captures a year in the life of a kindergarten where able-bodied kids are immersed in a world of wheelchairs, walkers
The one-hour documentary takes us into the lives of parents Alison Bowen and Cecilia Chan, who have enrolled their children in Bloorview’s “reverse-integration” kindergarten - one that invites able-bodied kids to attend a school for children with physical disabilities. Because Alison has
four-year-old twins - Mark with a disability
and Douglas without - “the film became more of a universal exploration
of what it takes to make integration work beyond the kindergarten program
and in the community,” Tina says. “One of the questions everyone asks is ‘Why would parents of able-bodied kids pay tuition to have them learn in a special-needs environment?’” Tina says. While children with disabilities register through the publicly funded integrated education and therapy program at Bloorview, able-bodied children register through the Institute of Child Study at the University of Toronto - a partner in the program - and pay tuition. “The justification most of these parents gave for their child being there was that they wanted the program’s unique empathy and social-skills training,” Tina says. In addition to disability awareness training - such as the opportunity for students to try out wheelchairs and walkers and brainstorm changes to gym and other activities that allow all children to participate - “the year ended with a four-month theme called “Friends are like Flowers,” Tina says. “You can get academics anywhere, but where is a class going to spend four months talking about what makes a good friend?” Tina says. “A colleague suggested that if the class is about empathy and social skills then we had to have some footage of the kids being bad initially, to show how they improved during the year,” Tina says. “But it’s a testament to the teaching team that right from the start they established this environment of caring.” While the program aims to promote inclusive behaviour in the able-bodied kids and self-advocacy skills in those with disabilities, Tina says that the filmmakers observed a powerful role-modelling between the older and younger children with disabilities. “They can see the next step, let’s say, in a child who was initially using a wheelchair and now uses a walker, or a child who used to use a walker and now uses canes. It helps them understand why they are doing all of those therapies and surgeries and gives them a path they can follow.” Tina says the documentary will “break open the box” on creative, inexpensive teaching tools that foster inclusion of children with special needs. An example is giving a long, foam pool noodle to a child using a wheelchair so that the child can reach out to touch other children during a game of tag, “equalizing the play,” Tina says. The teachers role play scenarios and encourage their students to suggest modifications, then have the class reflect on what worked following an activity, “reinforcing the exercise so that they remember for next time,” Tina says. The film includes candid interviews with parents in an attempt to “construct an empathy lesson for adults so that they don’t see this as just for families of kids with exceptionalities,” Tina says. “Hopefully a parent will see this documentary and think: ‘Oh, we’ve never invited that child with cerebral palsy in our son’s class to a birthday party. Maybe I should phone his mom to see what would be needed to make that happen.” Tina plans to create a series of shorter, 20-minute segments that can be used to improve teacher training and inclusion in community schools. An extended, feature-length version of the film was screened by families and school staff at The Regent last month, and a Toronto-based film festival has expressed interest in airing this version.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Canada invests in engineer’s smart technologyTom Chau awarded Canada Research Chair for devices that interpret intent behind eye blinks, hand gestures
In fact, this biomedical engineer at Bloorview - just awarded a Canada Research Chair in pediatric rehabilitation engineering at the University of Toronto - is finding countless ways to use smart technology to enrich the lives of children affected by disability. His goal? “To place the onus for adaptation on technology, instead of the child, so that the technology fits the child and evolves as the child’s needs and function evolve.” Tom’s research chair represents a federal government investment of $500,000 over five years, which will cover the bulk of his salary while he conducts research at Bloorview. It is a Tier 2 chair, recognizing emerging world-class researchers with the potential to lead their fields. Tom’s rehab devices are unique because they adapt to a child’s abilities and environment “on the fly” - in the same way that artificial intelligence equips web sites to learn and respond to a customer’s preferences. “Their distinguishing property is that they can self-organize on their own,” Tom explains. Part of Tom’s expertise comes from his work in data mining at the University of Waterloo, “where he looked at large data sets and teased out information that had relevance to the situation at hand,” says Dr. Mickey Milner, research consultant at Bloorview. “If you think about rehab and movement and intent to do things, it’s even before the child engages in the act that Tom needs to tease out factors that will tell us what the ultimate goal is.” For example, in the area of prosthetics, Tom is training a computer chip to interpret the sounds that a child’s arm muscles make as they contract, so that those sounds can be used to control an artificial hand or wrist. “Each person has unique muscle sounds and we’re able to teach the computer chip to link certain actions with certain sounds.” The system - which relies on sound and vibration sensors in the prosthesis - must adapt to wide variations in a child’s environment, from a quiet bedroom to a noisy playground. “It needs to be able to weed out environmental noise it hasn’t detected before, so that it doesn’t interfere with the child’s ability to control the device reliably,” Tom says. In partnership with The Hospital for Sick Children, Tom is building a communication system that will decode the most subtle of movements - an eye blink, head turn or thumbs up - giving a voice to children who have lost their speech in critical or palliative care. Based on a questionnaire to parents and nurses, his research team devised a core vocabulary of about 60 words “that would be critical for the child to communicate their medical, emotional and family needs. If it’s known that a child will lose his speech pre-operatively, the system could be tailored to what that child’s core messages would need to be, and we can bank children’s voices for when they lose the ability to speak.” The system - which will run on a laptop or palmtop device with a video camera - will adapt to the needs of the user, organizing the vocabulary menu based on the frequency and importance of messages. “For example, if a child consistently chooses the messages ‘Please don’t leave me’ and ‘Hold my hand’ at the same time, these messages will be presented together,” Tom says. Children will scan and select choices through eyelid, head or hand movements. When a child is tired, the device will pick up this change and adapt. For example, if the child begins to respond more slowly, be inconsistent or change gestures, key messages may be made more easily accessible or the system may respond at a lower threshhold, accepting less precise or more limited movements. This is important for
children in palliative care who may lose function on a daily basis, Tom
says. “One day they may be able to point, and the next
they may have to use eye blinks, so it doesn’t make sense to change the
” We see the whole spectrum of disabilities here and that means I can develop systems that have as wide an impact as possible. I also have the support of colleagues from a unique blend of disciplines that you don’t find anywhere else: clinicians, therapists, physicians, dentists and engineers.” To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Smoothing the way for William‘Families want solutions that incorporate familiar, everyday equipment’
Traditionally, prosthetic knees locked when a child placed weight on the foot as it touched the ground. They then unlocked - allowing the knee to bend - when the child pushed off the toes and swung the leg forward. However, most also required children to consciously extend their hip muscles when they placed their foot down. By locking as soon as the leg is extended, Jan’s knee “allows kids to pay attention to what they’re doing - rather than worrying about whether their leg is locked,” Jan says. With the new device, leg straightening activates a spring that pushes a pin into a hole that secures the knee before weight is placed on the foot. When the child pushes off his toes, that force is amplified through a lever mechanism that removes the pin, unlocking the knee. This mechanism - similar to that used to open and close a door - also met another important design criterion: it was simple and therefore small enough to fit even a four-year-old. Instead of relying on six or more main components, Jan’s knee uses only four. That means it’s about two inches shorter than its main competitor. Jan’s knee is also designed to speed the time it takes the leg to swing forward. Traditionally, “the faster a child walks or runs, the longer it takes for the prosthetic leg to swing forward into the position where weight can be placed on the foot again,” Jan says. Jan’s knee has a spring that pushes a roller against the top part of the knee, storing energy as it compresses while the knee flexes. That energy is then released to help propel the leg forward faster. Jan’s knee has evolved through three prototypes and “William has stuck with me for over two years, giving feedback that was invaluable,” Jan says. The knee was conceived as a masters project while Jan studied in a University of Toronto program that combines mechanical and biomedical engineering. It will now undergo further field testing.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Finding the perfect fitMassive limb use study aims to help therapists track which prostheses work best for children at different stages
Prosthetic rehabilitation therapists and researchers at Bloorview Kids Rehab were among the first to discover that not all children with upper-body prostheses used their limbs in the same way, which may have limited their effectiveness. The problem was they didn’t have the data to prescribe the best product. And when powered artificial arms can cost tens of thousands of dollars, parents and funding agencies want to get it right the first time. So the modest Bloorview pilot study that began seven years ago to collect data to identify trends among 40 children has morphed into the Prosthetic Upper Extremity Functional Index (PUFI), a monumental research effort to spot artificial-limb usage patterns among over 1,000 children around the world. PUFI is essentially a multiple choice, computer-based questionnaire asking how children aged two to 18 fare performing a lengthy list of two-handed tasks like holding a hockey stick or tying their shoelaces. The results - housed in a database - will provide a complete comparative portrait of “how children use their devices to perform these tasks, as well as which prostheses work better for different age groups in different rehabilitation and everyday situations,” says Virginia Wright, the clinical researcher co-ordinating the project. “The PUFI software program - which is filled out by parents and children - is time-efficient,” Virginia says. “Scoring the questionnaire only takes a few seconds, so clinicians can be more directed in what they’re doing and problem-solve as to what tasks might be more of an issue. Right now we use a lot of paper measures. They’re very cumbersome because there’s no easy way to compile them to compare children’s experiences.” In 2002, the PUFI project was embraced by the famed Shriners Hospital for Children, a network of 22 facilities throughout North America that specializes in orthopedic care. Shriners is currently using the PUFI criteria to measure prosthetic usage trends among more than 300 children, giving the index the statistical weight to be considered an accurate portrait. Bloorview recently secured the commitment of 12 other facilities to participate in building PUFI into the first database of its kind: five in Canada, three in Britain and one each in Australia, Holland, Sweden and Slovenia. Word of the project spread positively through rehabilitation circles after Sheila Hubbard, manager of Bloorview’s amputee team, presented pilot study results to international conferences for prosthetists and orthotists. In April, the project was endorsed in the international Archives of Physical Medicine and Rehabilitation, which concluded that the PUFI “showed promise in identifying prosthetic skill and use in children of different ages and abilities.” “We want to get an idea of how usage patterns change over time, such as what eight-year-olds use [prostheses] for compared to 13-year-olds,” Virginia says. This information will be invaluable to manufacturers when modifying their products. “Governments and foundations who pay for prosthetics and research want extensive data measuring their effectiveness,” Virginia says. The project started out with $30,000 from Bloorview Kids Rehab and the Ontario Rehabilitation Technology Consortium for development of the software needed to process the data. Members of this team were Rose Nishiyama, Ka Lun Tam and Susan Cohen. More recent funding of over $20,000 from the ORTC and $66,000 from Bloorview Children’s Hospital Foundation was essential in enabling the PUFI sample to go international, so it is large and diverse enough to make the index a standard scientific measurement. “It also allows us to do a collaborative analysis with the different centres,” Virginia says. “Each centre will also get a report on the overall trends from the data collected at their centre.” Researchers want to add 100 children to the database each year - between three and 10 kids per facility - as well as re-evaluate the patterns from the children who are already participating. The ultimate goal is to put the PUFI database on the web, so therapists can instantly add to and access the latest data.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. High-fat diet puts Ashley back on the ice
Today, Ashley rarely has more than one seizure a week, has jumped three grade levels in two-and-a-half years, and just earned a spot to compete in figure skating at the National Special Olympic Games in Prince Edward Island next year. Her mother attributes her improvement to her ketogenic diet - a high-fat, low-carbohydrate diet that’s offered at Bloorview to children with intractable seizures. “The first thing we noticed with the diet was her ability to focus, which allowed her to move from an early grade 1 level at school to an early grade 4 level in two-and-a-half years,” Debbie says. “She also gained back her motor skills, which allowed her to accomplish her skating. And there was a huge leap in her confidence.” That kind of success with the diet is common, says Dr. Rosalind Curtis, a pediatric neurologist who runs the complex epilepsy clinic at Bloorview. “About 25 to 30 per cent of children become totally seizure-free while on the diet, while another 40 per cent will have a 50 to 90 per cent reduction in seizures.” The remainder don’t respond at all. “The ketogenic diet was invented by a chap in the 1920s who noticed that when his child was sick and not eating, the seizures reduced,” Rosalind says. “So he developed a diet that would mimic starvation in terms of its chemical results.” The ketogenic diet does this by replacing carbohydrates with fat. On the classic ketogenic diet, children receive 90 per cent of their calories from fat, about 5 to 7 per cent from protein, and 3 to 5 per cent from carbohydrates. “Just as carbohydrates are broken down into glucose, fat is broken down into chemicals called ketones, and those ketones are used in place of glucose for metabolic energy,” Rosalind says. For some reason, which has not yet been determined, one or more of the ketones control seizures in many children. “It’s very effective and better than medication when a child has reached that stage of epilepsy,” Rosalind says. However, it’s also “a very difficult, restrictive diet,” she says, because of the lack of carbohydrates permitted. “The children can’t have bread, potatoes, pasta, candy or sugar,” she says. Instead, two-to-three times the amount of fat a child would typically eat is provided through butter, oil and whipping cream. For example, a child’s breakfast might consist of two tablespoons of whipping cream, one egg, one teaspoon of sugar-free applesauce and three tablespoons of butter, says Christiana Liu, a dietician in the complex epilepsy clinic. If the diet is effective, children typically stay on it for two years, and then are slowly weaned off it to a regular diet. While on the ketogenic diet, they may be medication-free, or use a much lower dose of seizure medication than before. “When effective, the diet gives the brain a chance to mature and stop seizing,” Rosalind says. “If we can keep a brain seizure-free, the chances of the child outgrowing it are higher.” Children who become seizure-free on the diet often have no recurrence after going off it, while those who see a significant reduction in seizures will usually maintain that status after the diet. In Ashley’s case, she was seizure-free for the first year on the diet, but then experienced occasional seizures during her second year. When she came off the diet last fall, she required a much lower dose of seizure medication than she had in the past. Although the diet has a high rate of efficacy for children with intractable seizures, “there’s always concern among some health professionals and parents because it’s so imbalanced,” notes Christiana. The children receive vitamin and mineral supplements and are closely monitored, but there are questions about the impact of the diet on their growth, nutritional status and heart health. About eight per cent of treated children develop kidney stones, and a pilot study by Rosalind and her team at Bloorview - published in the Journal of the American Dietetic Association last year - found that 85 per cent of children who had been on the diet for an average of 14 months experienced a slowing in their height growth. “That’s because they’re not getting the typical amount of protein,” Rosalind says. “However, when we look at children who have been off the diet for two years, they tend to catch up in growth.” Rosalind and her colleagues hope to demonstrate that with proper supplementation and monitoring, children can remain healthy while on the diet. They’ve begun an ongoing study that will monitor nutrient intake and growth and biochemical indexes of children with intractable epilepsy at six, 12, 18 and 24 months on the diet. A pilot of the study - which looked at these variables in 30 children who had been on the diet for four months - was published last month in the Journal of the American Dietetic Association. “It showed that there were no changes that one would be concerned about in terms of growth, vitamin levels or nutritional status, and we’re going to use that as a baseline for our long-term study,” Christiana says. Some children do see their cholesterol levels rise during the first year on the diet, but these levels are monitored, so the diet can be adjusted if necessary. Debbie May is confident her family made the right choice in putting Ashley on the diet. “It gave her brain the long rest that it needed, and that had a huge impact on her learning, skating and self-confidence.”
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. Harnessing the murmur of muscles
Until now, prostheses have been powered by measuring electrical signals produced by the muscles, then converting those signals into movements. The sensors that record these signals must be mounted in a hard plastic socket just below the elbow, so they can be secured on the forearm muscles. But this limits function and comfort. Because the elbow fits into the hard socket, the user can’t naturally rotate his or her arm. And because the device is suspended from the elbow, all of its weight is concentrated there, creating pressure that can be uncomfortable. By using muscle sounds, Tom’s team plans to change the location of the sensors, so eliminating these problems. Because muscle sounds travel down the limb, they can be measured away from the contracting muscles. This will allow Tom and his colleagues to place sensors close to the end of a person’s stump in a soft, sock-like device that rolls on. The elbow will be covered by a soft silicone - instead of a rigid plastic - “so users will retain the natural rotation of their forearm,” Tom says. And because the device will wrap around the limb - instead of hanging from the elbow - “its weight will be better distributed, making it more comfortable.” Currently, Tom’s team is designing two components of the sensor that will pick up the small rumblings emitted by muscles. One measures sound and the other vibrations. Both are “about one-quarter the size of a baby nail,” Tom notes. These sensors will convert muscle sounds into electrical signals that will be sent to a tiny microcontroller that will activate various movements, based on control strategies developed for each user. An ongoing challenge with powered prostheses has been how to distinguish between contractions a person intentionally makes to activate the prosthesis and background “noise.” This can be created by sensors moving against skin during unintentional movements - such as when people swing their arms when walking - or may simply be a result of noise in the person’s environment. The research team - which includes Steve Naumann, director of rehab engineering, graduate student Jorge Silva and prosthetist Winfried Heim - hopes to tackle this in two ways. First, by having the sensor embedded in silicone - as opposed to placed in a slot in a plastic, hard-socket device - the silicone will “act as a filter for high-frequency environmental sounds,” Tom says. Second, the design of the new sensor will address the issue of background noise from unintentional movements. The microphone component, placed closest to the skin in the device, will pick up sounds from both intentional and unintentional contractions of the muscles. The vibration component, however, will be placed farther away from the skin and with a thick layer of silicone inbetween, allowing it to detect only unintentional sounds. The signals will then be sent to a microcontroller that will weed out unintentional sounds before powering the prosthesis. The team is looking at how many sensors might be required in one device, and whether information can be combined from a number of them. They’re also analyzing signals from muscle sounds to determine if there are characteristic ones associated with different contractions. The first phase of the project looks at developing the sensors and the second involves embedding them in soft sockets. A prototype is expected later this year.
To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826. |
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