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To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.


Thumbs up for Adam!

Bloorview staff harness the power of Adam's only moving digit to give him a new level of communication

Adam Rodziewicz, 17, has a rare disease that destroys his muscles: he can’t breathe without a ventilator, is unable to speak and can’t move.

During the nine years he’s lived at Bloorview Kids Rehab, his communication has been limited to eye blinks (up and down for ‘yes,’ side-to-side for ‘no’), tongue movements and the crinkling of his eyes (a hearty laugh).

A talking machine was mounted on his wheelchair and his hand was positioned so his thumb could hit a switch to activate words represented by pictures on the screen.

Six months ago - in a bid to expand his communication - Bloorview’s augmentative communication team and numerous other disciplines at the children’s rehab hospital worked together to harness the power of the only movement Adam has: a tiny bend of his left thumb.

“He surprised everyone by picking it up like crazy,” says Marilyn Emery, Adam’s teacher at the Bloorview School. While Adam was lukewarm to a communication book others controlled by pointing to pictures and waiting for his ‘yes’ or ‘no’ blink - soon after being given his talking device, Adam was scanning through multiple pages of 25 words each and clicking out messages independently.

The machine contains pictures and words related to people, school, social interactions, feelings, art, medical needs, sports, story writing and movies.

Liberating technologies for children who are ‘locked-in’

Most of the children who stay at the complex continuing-care unit at Bloorview Kids Rehab are “locked-in” by their inability to speak or to move.

Dr. Tom Chau, a biomedical engineer at the Bloorview Research Institute, believes every child has the right to express himself - even if that child has no speech or motor control.

So Dr. Chau is developing a system that will detect subtle physiologic processes - changes in a child’s brain waves, breathing patterns, heart rate or skin conductance - then translate them into electronic speech or control of a wheelchair or household device. For example, the holding of breath, a slower breath and a deep breath could each be linked to different words on a communication device - or to control of different functions on a television.

In this way, children who are “locked-in” physically and verbally will be able to express their personalities and control their environment physiologically. To indicate “yes” or turn on the TV, a child may simply think or breath it.

Dr. Chau is Canada Research Chair in Pediatric Rehabilitation Engineering and leads a multidisciplinary team of scientists, health-care professionals and graduate students at Bloorview in developing breakthrough technologies that improve the quality of life and independence of children with disabilities.

Bloorview staff were surprised to hear Adam call out their names for the first time and ask how they were, Emery says. “He no longer has to wait to express himself until someone comes over to him.” And instead of staff sometimes guessing at what he wants, he can be specific - asking to have his vent suctioned or to be told the score in the hockey game from the night before.

“He knows stuff we had no idea he knew!” Emery says. “He’s been hiding under a bushel for quite some time!”

The key to Adam’s success is that staff and volunteers across the organization have become active partners in his use of the talking machine, Emery says.

Teachers and educational assistants, nurses, respiratory therapists, speech therapists, therapeutic recreation specialists, volunteers and even Ricky - Bloorview’s therapeutic clown - have jumped on the bandwagon.

In school, Adam can use his communication device with teachers to learn basic numeracy and literacy and write stories, while in other areas it’s opened up a whole new world of self-expression and socializing.

“He’s able to initiate conversation, instead of waiting for someone else to figure out what he wants to say, and then being restricted to a ‘yes’ or ‘no,’” says Kim McFarlane, a therapeutic recreation specialist who worked with Adam all summer to boost his familiarity with the communication device.

When working with a volunteer on a painting, Adam can now independently suggest what he wants to paint and in which colours. When crafting a story with Ricky the Clown, he can let Ricky know which characters are involved and who’s the bad guy. And when he goes to school each morning, he loves his new ability to share news of what he did the night before: “He’ll let staff know that he saw a movie, went to the Blue Jays game or decorated his room for Halloween,” McFarlane says. “Sometimes he’s so excited about communicating that we have to remind him that he only has to tell people something once!”

When asked what his favourite movie is, Adam quickly scans to his movies page, and clicks on Big Momma’s House and The Incredibles.

McFarlane says Adam’s success reflects the spirit of Bloorview, which is captured in its new tagline: From Disability to Possibility.

“The mission of all of us here at Bloorview is to enable kids to express themselves and have the opportunity to do what they like. With technology and dedicated professionals who are creative, work together and see possibilities, we can bring these opportunities to clients like Adam.”

To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.




Tuned in, turned on

Music program uses adapted instruments to give teens with disabilities the opportunity for artistic expression

Nicole Turner can’t lift a fork to her mouth.

Yet thanks to an innovative program that brings adapted music to Ontario children with disabilities, the 15-year-old is a drummer in the band Train Wreck.

Nicole Turner, centre, 15, jams with other members of the Thames Valley Children's Centre Train Wreck band.

A recent performance at the University of Western Ontario had the aura of a rock concert: Nicole’s image was projected close up on a big screen while she and two other teens belted out tunes like Boulevard of Broken Dreams and Sweet Home, Alabama.

It didn’t matter that Nicole and her peers had minimal use of their hands and one player didn’t speak. Two band members triggered bass and snare drums with head switches on their wheelchairs, while a third plucked guitar strings, her attendant pressing down the frets.

“For children with disabilities, often the attention is on them because they can’t do something, but this time the attention was on them because they could,” says Janal Bechthold, music therapist at Bloorview Kids Rehab (formerly Bloorview MacMillan Children’s Centre) in Toronto. “For the first time, people were listening to them and hearing them.”

Bechthold and Roger Knox, a music researcher at Bloorview, are partnering with children’s treatment centres across Ontario to launch programs that open the world of music to children unable to play conventional instruments.

As part of Ontario Wavemakers - a program funded by the Ontario Trillium Foundation and Bloorview Kids Rehab Foundation - Bechthold and Knox helped nine treatment centres purchase adapted equipment, then provided training, curriculum resources and ongoing support so they could offer music programs to about 200 Ontario children.

The technologies include Midimate - an interface that gives children the ability to control a keyboard with switches (this is how Nicole played her drum) - and a virtual instrument children play by waving their hands over coloured balls on a screen, each sounding a different note. Both were developed at the Bloorview Research Institute.

Children receiving services at the participating treatment centres - from Thunder Bay to London - had never had the opportunity to play music before.

“We couldn’t have offered this program on our own,” says Jeanie Hicks, principal of the Ottawa Children’s Treatment Centre School. “The training is key, as is the awareness of adapted music. We wouldn’t have known (about it) or followed up without the support of Bloorview.”

Ontario doesn’t fund adapted music equipment, so it’s not available on an organized basis across the province, Knox explains. The one-time Wavemakers grant from Trillium gives treatment centres a unique opportunity to build the capacity to run their own programs. “As a provincial resource, we wanted to share the technology and music expertise we’ve developed here at Bloorview."

In about half of the programs, a music therapist was involved, while at some centres occupational therapists or therapeutic recreation specialists took a lead role. In most cases, 10 sessions were offered to groups of about five children who ranged in age from preschoolers to teens. In one case, children with and without disabilities participated.

At Thames Valley Children’s Centre in London, Ont. - where Nicole receives services - a unique partnership with a local music academy was struck: the academy provides a music instructor to lead the sessions and support the development of their spin-off band, the Train Wreck.

“I dreamed of being a drummer but I never thought it was possible,” Nicole says. When performing, “I feel a sense of accomplishment and an adrenaline rush. It’s also helped me gain more control in my movement.”

“Staff tell us they’re seeing abilities in the kids that they never saw before,” Knox says. “The kids are listening to the music and responding to it. Many of them may not have had the opportunity to develop their social skills, but now they’re participating in a group where they each need to chip in and work closely together. Even though they have little movement, they’re able to make the big gestures of music and that opens up a whole new realm of experience.”

At the Ottawa Children’s Treatment Centre School, where a program was offered to children aged four to seven, “We were surprised at how some students responded,” Hicks says. “It was evident that they were anticipating their role and waiting to hit the (switch), and this was not a behaviour we would have predicted.”

For children with motor and communication disabilities, adapted music provides a powerful creative outlet, says Cathy Kelly, manager of recreation at Grandview Children’s Centre in Oshawa, Ont. “For the kids who are non-verbal, this allows them a method to make sound independently,” Kelly says. “It’s an opportunity to creatively express themselves and socialize with other kids. The smiles on their faces say it all.”

Bechthold says next steps are to expand Wavemakers into regular schools where children with disabilities are integrated, as well as group homes and other organizations working with adults with disabilities.

To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.


The engineer of childhood wonder
Tom Chau recognized for bringing the world of play to all children

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.
“Our goal is to create devices that learn about the child and evolve with their needs, rather than casting them into some kind of ‘typical’ mould,” Tom says.

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
'Being able to speak for yourself is an important skill in developing independence'

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.”
The catalyst, Libby says, was an innovative Chat Club that brings together children using voice technology to boost their comfort and skill interacting in a wide range of 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.
“They all had a page with verbs for making pizza - such as roll, kneed, flatten, sprinkle; food choices, such as toppings; and comments like ‘I don’t like this’ or ‘it’s gooey,’” Gail says.

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

Speech-recognition software designed for students with learning disabilities: “It closes the gap,” mom says

The first speech-recognition software for students with learning disabilities hits the market this month.

SpeakQ - developed at Bloorview Kids Rehab in Toronto with funding from the U.S. Department of Education - is targeted to students who have strong verbal skills but struggle to read and write.

For Adam Nicholson, 14, it’s meant being able to excel in gifted programs instead of struggling in a regular class where he was labeled a behaviour problem.

“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 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

Nature-based play programs to help children in Southern India cope with the psychological trauma of the Asian tsunami will draw on the philosophy and activities of an arts garden at Canada’s largest children’s rehabilitation hospital.

Jan MacKie, co-ordinator of the artist-run Spiral Garden at Bloorview Kids Rehab, will travel to Tamil Nadu in January with the International Institute for Child Rights and Development to train local staff for outdoor play programs. The goal is to help Southeast Asian children rebuild their sense of trust in the natural world.

Toronto’s Spiral Garden brings kids with and without disabilities together under a canopy of trees to tend to an organic garden; sculpt a world out of a mound of clay; work wood with saws, hammers and nails; bake bread; and celebrate community through storytelling. It’s based on the philosophy that interaction with natural and creative processes provides a context for healing.

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
courtesy of OACRS, Family Net, Natalie Miller

Gillian Nadel, swim instructor and aquatic program leader, works with Harry Barberian, 4, who wears an accessible wetsuit, a new invention, in the Bloorview Kids Rehab's Snoezelen pool.

Design brainchild of Bloorview Kids Rehab aquatics co-ordinator

After five minutes of swimming in his community pool in Aurora, the boy was chilled.

Complaining he was too cold and wanting to go in the hot tub, his swimming lesson ended abruptly. For children with special needs, generating and retaining body heat can be difficult and their tight muscles clamp more when they're in cold water. That's why for several years children with special needs and their parents traveled to Bloorview Kids Rehab in Toronto where the pool is kept intentionally warmer at 92 F.

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 was recently recognized by her colleagues for her invention "anybody could have thought of." The aquatics co-ordinator received a Bravo! award, a new initiative that recognizes staff innovation and creativity at the children's centre. While Louise says she was "certainly proud " to receive the award, "we're not in it for the accolades."

Sheila Jarvis, president and CEO, say there are some employees who are "quite exceptionally creative" and "we wanted to recognize this in a meaningful sort of way. "

"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.

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
courtesy of OACRS, Family Net, Natalie Miller

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:

  • Louise Kublick for her invention of a wetsuit that helps kids maintain body heat
  • Barbara Germon for helping establish ‘Kid Talk’, a peer support group to help children who have cerebral palsy deal with bullying and teasing
  • Val Lusted for helping establish ‘Future Zone’, a life skills day program for youth and young adults living with acquired brain injury
  • Shane Glasford for inventing a new prosthetic fitting system using custom silicone liner
  • Bill Johnson for making a multi-adjustable mounting system for wheelchairs

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’

Biravina, 8 (right), perfects her favourite bubble: an oversized one that wobbles back and forth precariously before touching down.

One minute Biravina’s face is covered with a mask as a nurse treats her laboured breathing.

The next it’s in front of a bubble tube held by a clown named Flora. “Coming up is the magic” the eight-year-old promises, pursing her lips and blowing an extra large bubble that wobbles unsteadily through the air.

Biravina, who’s receiving rehabilitation at Bloorview following her body’s rejection of a bone-marrow transplant, receives a weekly visit from Flora - a therapeutic clown with a red nose, floppy hat and bag of wind-up toys, animals, bubble bears and stickers.

“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’s palmtop voice output device

Last Christmas, 13-year-old Kayle grabbed his palmtop, typed in a sentence and hit the voice button to share it with his grandparents: “Santa brings presents, Christmas tree, snow, two mittens,” declared the handheld device.

Kayle, who has autism, had never acknowledged Christmas before and his grandparents had struggled to convey the spirit of the holiday to him. “Kayle’s message was the best Christmas gift ever,” recalls his grandmother Lynne, noting that the mittens were a reference to a story they had read Kayle about a child receiving mittens for Christmas.

Kayle is one of a growing number of non-speaking children with autism who are finding their voice through technology. “In the last 10 years we’ve discovered that kids with autism have a lot to say and can express wishes and thoughts we never knew they had,” says Margaret Ettorre, the speech-language therapist in Bloorview’s communication and writing aids service who prescribed Kayle’s palmtop voice output device.

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.
It’s this combination that has allowed Kayle’s communication to soar. “The keyboard makes a huge difference because he always liked writing things down but we often couldn’t read them,” Lynne says. “The keyboard gives him access to any word he can type in, not just those that are programmed into the device.”

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.”
Kayle’s palmtop includes pages for words and phrases related to places, people, school, his favourite restaurants and common social expressions.

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.”
Lynn says her grandson’s palmtop has made a huge difference in how other people respond to him. “In our civilization, the spoken word is the be-all and end-all. When he used to pull out a piece of paper and pen, people would ignore him and look to us for the answer. The palmtop has given him a voice and people who wouldn’t have given him two minutes before pay attention to him now. They’re fascinated to watch him use it.”

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
Canadian awards support development of new smart hand and study of how children learn to move

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.
“ These plastics are flexible, quiet and durable and have more natural, life-like movement than the bulky motors and gears used in conventional prosthetic hands,” Elaine says.

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.


For Phoebe, 14, who has fibromyalgia, Bloorview's heated pool is an oasis. "It's the only time the pain goes away"

With pain disorders, looks can deceive

‘So many doctors didn’t know about (fibromyalgia).

They kept sending me to psychiatrists who asked why I didn’t like school”

Alice can think of only one word to describe her daughter Phoebe’s descent into debilitating pain and fatigue. “Horrible,” she says.

“Phoebe had constant pain in her back, neck and head. She couldn’t do anything. She was home all day and missed almost two years of school. Sometimes she would sleep all day and be up all night. We would go to the doctor two to three times a week, trying to get help. We tried everything we could possibly think of, but nothing made a difference.”

A year after being told that Phoebe fit some of the criteria for fibromyalgia - a musculoskeletal disorder associated with deep muscle pain, fatigue and disturbed sleep - Alice found herself down at the Hospital for Sick Children “sobbing and begging for help. ”

Phoebe’s diagnosis was confirmed and the 13-year-old was referred to Bloorview’s inpatient pain service - “a structured program that aims to get these kids back into a more normal routine,” says physiotherapist Lisa Engle. “We don’t promise that the pain and fatigue will get better. Our goal is to make the children more active participants in society and better able to manage their pain. Historically, the only treatment they’ve received is medicine-based.”

Phoebe stayed at Bloorview for four weeks, following a daily program that included regular wake-up and bed times, exercise in the pool and on a bike and treadmill, occupational and physical therapy and social work counselling. She also attended our onsite school with regular rest breaks that were reduced as she became better able to manage.

“A structured routine with sleep and wake times and cardiovascular exercise is key to getting the sleep problems - which can exacerbate pain - in order,” says occupational therapist Dana Driesman.

Counselling focuses on the emotional effects of chronic pain. “Quite often children are scared that they won’t be able to make changes, that this is the way life is going to be,” says Elaine Smith, social worker. “They can feel hopeless. Some feel anxious because they wonder why this is happening to them.” Most clients have missed a year or more of school and are isolated at home “with a much smaller circle of friends,” Elaine notes.

Phoebe says the most helpful part of Bloorview’s pain program was the recognition that she had a legitimate health problem. “This is something real and the people at Bloorview know that. They know that even though I may not look like I’m in pain, I am. So many doctors didn’t know about (fibromyalgia). They would look at me and say you don’t look sick. They kept sending me to psychiatrists who asked why I didn’t like school.”

Alice echoes her daughter’s frustration about getting a diagnosis. “Many doctors had dismissed it - suggesting Phoebe was depressed, lazy or having problems at school, or that I wasn’t strict enough,” Alice says. “At Bloorview, there was no question of us doing something wrong. The focus was on getting better and what made a huge difference was that the people there believed they could get her back on her feet. We both felt an overwhelming sense of relief.”

While in the program, Phoebe’s pain decreased and her sleep improved. When she went home, she was able to return to school. “Getting her up and moving was very important, because she hadn’t been getting out of bed and as a result her muscles had atrophied,” Alice says.

Phoebe still has pain, but she knows how important exercise, diet and sleep are to managing it. “No matter what, I have to get up in the morning and I have to go to bed early - there’s no staying up late,” she laughs, noting this is no easy feat for a teenager. “I need to have regular cardio exercise. Going to school and walking around isn’t enough. During the Christmas holidays I started to go to bed later and get up later and then I went downhill again.”

Phoebe recently came back for a short stay at Bloorview. “The problem isn’t totally solved, and we still don’t have a cause for any of this, but we know how to control it,” Alice says. “We also know that if she ever gets really bad, she can go to Bloorview and get the help she needs.”

To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.


Hospitals join forces in child development

A program that assesses childhood developmental disorders moves from Sick Kids to Bloorview

Bloorview Kids Rehab and the Hospital for Sick Children are pooling their expertise in treating children with developmental disabilities by transferring Sick Kids’ Child Development Centre to Bloorview.

The new integrated program - called the child development program - will assess “the most complex and challenging children with developmental disabilities, including autism and learning disorders,” says Dr. Golda Milo-Manson, chief of medical staff at Bloorview. It will provide one access point for children requiring assessment, with the goal of seeing more children sooner.

The move grew out of a health ministry directive that Toronto teaching hospitals work together to improve efficiency and care.

“We have the capacity in terms of developmental pediatricians and given the leadership role we’ve played in research, clinical work and education, and our new building, it made sense to bring everyone together here,” Golda says.

Depending on the needs of children, they will be assessed by a developmental pediatrician or a multidisciplinary team that includes psychology and speech-language pathology.

The program will then work with schools, treatment centres and other service organizations to help families access services in the community when possible. “At this point we haven’t received any additional funding but we’re hoping to advocate for increased resources,” Golda says.

In partnership with Sick Kids, Bloorview trains pediatricians to work with children with developmental disabilities in the largest fellowship program of its kind in Canada. “Caring for children with developmental needs is a very specialized area and there’s an extreme shortage of trained physicians in Canada,” Golda says.

The field got a boost with the creation of a division of developmental pediatrics at the University of Toronto’s Faculty of Medicine last month. With the consolidated child development program at Bloorview, Canada’s largest children’s rehabilitation hospital and Sick Kids have a great opportunity to expand research into developmental disorders.

To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.


Jacob, 15, simply says what he wants to write and SpeakQ turns it into text in his computer document

Device puts spoken word in writing

With SpeakQ, students with learning disabilities simply talk to get their thoughts on paper

The first speech-recognition software for students with learning disabilities hits the market next month.

SpeakQ - developed at Bloorview Kids Rehab - is targeted to an estimated 10 per cent of students who have strong verbal skills but struggle to read and write.

“When they 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 speaks it back so they can identify errors,” says Fraser Shein, the engineer who led the development team.

SpeakQ was designed to be simple, in contrast to other speech-recognition products - targeted at high-end users such as lawyers and doctors - that require a high degree of literacy, Fraser says.

For example, in order to train conventional products, the user has to read text on the screen and speak it back, an obstacle for students with reading problems. “We’ve redesigned the training interface so that the computer reads out the text and prompts the student to speak it back,” Fraser says. “It’s user-friendly and intuitive and allows the student to train independently.”

The other key difference with SpeakQ is that it provides immediate speech feedback so students can check for accuracy in their writing. “Children with learning disabilities who have trouble reading can’t see their mistakes in text,” Fraser says.

SpeakQ can be used in two ways. Students can speak a word or phrase and see it displayed in a box with four alternate choices 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 a powerful 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. “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 translated into text.

“There’s nothing on the market that combines speech recognition and word prediction in a single product in this way,” says Bob Follansbee, project direct at the Education Development Center in Newton, Mass. The research centre - which manages 335 projects that advance learning in 50 countries - received a $100,000 U.S. Department of Education grant to collaborate with Bloorview in the development of SpeakQ. “Clinicians and professionals who’ve seen the product are very excited and anxious to try it with students and clients who need that extra support,” Bob says.

It will be targeted initially to students at high schools and universities.

SpeakQ can work with any software application and will sell for about $200. It’s necessary to purchase WordQ - which retails for $225 - as the two run together seamlessly. SpeakQ will be manufactured and marketed throughout North America by Quillsoft, a private company headed by Fraser.

Other key players in designing the product were Tom Nantais, a senior software engineer and programmer; Rose Nishiyama, a human factors designer; and Shae Birch, a software programmer. All work at Bloorview.

“I have immense respect for the work of Fraser and his team,” Bob says. “They’re well known in the field because of a variety of assistive products they’ve developed in the past.”

To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.


Cracking the language code

A stroke robbed Nicole of the ability to express herself. At Bloorview , she ’s finding her voice again

Nicole , 8 (left), with Bloorview School teacher Cathy Smart, writes math equations with her left hand following a stroke that paralyzed her right side.

Angel girl.

It’s written on Nicole’s shirt and it’s a perfect description of the eight-year-old, says her father Michael. “She was a leader in her class, a straight-A student who was highly sociable and loved to dance, play soccer and ride her bike. ”

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.
“I had great expectations for Nicole’s future and to be taken into this world of unknowns - where no one could tell us to what degree she might recover - was devastating,” Michael says.

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

For school principal, a specialized early program for students with disabilities is best guarantee for inclusion later on
Linda LaRocque recognizes that her current role as principal of a school for children with disabilities seems a bit of a contradiction.

“I spent years as superintendent for special education in the Toronto board and was a huge proponent of inclusion in the public schools,” says the principal of Bloorview School Authority, the on-site school of Bloorview Kids Rehab. “But I learned that true inclusion is so much more than putting a child with disabilities in a class with regular kids. That’s a simplistic notion that almost guarantees the child with disabilities inequity of opportunity.”

Real inclusion takes careful planning and preparation, Linda says, and is at the heart of the early primary program she runs for about 65 children with disabilities aged four to six at Canada’s largest children’s rehabilitation hospital.

Joan and her peers get a workout on adapted trikes at an on-site school at Bloorview that combines therapy with rigorous academics to prepare students with disabilities for later integration.

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.


Software unlocks the writer in Luke

”Word-prediction tool enables boy with hand tremors to put his thoughts on paper"

Luke is a great story-teller. But the 12-year-old Barrie student used to do anything to avoid putting pen to paper.

Word predictions appear in the box on the screen after Luke types the first one to three letters of a word, reducing the key strokes he needs to make by 50 per cent and making it much easier to write given his hand tremors. Visit

That’s because Luke was born with tremors in his hands that make writing exhausting and the words illegible. He got by at school by giving his answers orally or having his teacher or education assistant scribe his work. But he’d fallen behind in spelling and math, and while a computer helped, his shaky hands made the process painstaking and prone to error.

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.
Seeing word predictions on the screen and hearing them echoed back “has really helped Luke with editing,” Ruth says. “The correct spelling comes up and after seeing it a number of times in this non-threatening situation - as opposed to in a drill - Luke’s spelling has improved. The oral feedback has also helped him in composing sentences and using punctuation.”

To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.


Justine, 5 (left), injured in a ski accident in March, blossomed in the artist-run Spiral Garden, a camp supported by Bloorview's fundraising campaign.

Alex's dad is giving back

Daughter's legacy spurs investment banker to lead hospital's most ambitious fundraising campaign

Dougal Macdonald jets around the world helping companies manage mergers and acquisitions.

But as voluntary chair of the most ambitious fundraising campaign in Bloorview’s 105-year history, it’s his private story of parenting a child with disabilities that counts.

“Our daughter, Alexandra, was born with a genetic disability and died from renal failure at the age of seven,” says the managing director of investment banking at Morgan Stanley. “Alex had complex needs. As a family, a critical point of support for us was the loving care she received through respite services at Bloorview when we needed a break. ”

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.
Dougal is one of many parent volunteers supporting Bloorview’s campaign. When approaching potential donors, he likes to share his personal story - and those of other families - “to make people understand that disability can happen to any family,” he says. “I think there’s a misconception that the hospital just serves children with congenital disabilities. Yet if a child has an accident on the playing field or is run down by a car playing ball hockey, while the first port of call will be Sick Kids, they may very well spend more time at Bloorview in rehabilitation. One of the reasons I joined the campaign is that I think Bloorview is less well known and broadly supported than it should be, given the immensely important services it provides. The notion that a hospital also has a school, social workers, a gym, recreation activities and engineers who develop prosthetic limbs, wheelchairs and other devices, is something that most people are not aware of. Bringing donors here is most compelling because they can see that the objective is to allow children, whether they have congenital or acquired disabilities, to live life to the fullest.”

To be connected with expert sources, call Louise Kinross, Manager, Communications at (416) 424-3866, pager (416) 589-8826.


A restful retreat

Construction is underway on Bloorview’s new $100-million facility - a 343,000 sq. ft. L-shaped building. Terry Montgomery, lead architect, describes it as “a unique design with a country atmosphere - a kind of restful retreat within the city.” Sites & Sounds asked Terry, principal at Montgomery Sisam Architects Inc., to elaborate.

How would you describe the design?

Viewed from the back, this model of Bloorview's new building shows the unique sloping roof - part of plans to build low at the front to fit with the residential neighbourhood.

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

Deane, 5 (right), tries out a vibration sensor worn on a neckband that alerts caregivers to aspiration in children with swallowing problems. Like many technologies developed at Bloorview Research Institute, the device will give children greater freedom at home.

Bloorview Research Institute brings together scientists and engineers to study childhood disability

What do a virtual piano and a steroid have in common?

They’re both used by researchers at Bloorview to defy disability and reflect the broad mandate of the hospital’s new research institute - the first dedicated to childhood disability in North America.

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.
Tom and Doug represent the spectrum of a multidisciplinary team of scientists and engineers at Bloorview Research Institute - which was launched in June with a $25 million gift from Bloorview Children’s Hospital Foundation.

“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.
Areas of focus will include the incidence and cost of specific childhood disabilities; evidence-based evaluation of clinical interventions; engineering of high-tech devices that improve the independence of children; and measuring barriers to social participation. “We want to look at the social, cultural, environmental and attitudinal barriers that children with disabilities face, and how we can optimize their participation and integration into the home, school and community,” Colin says.

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 funny

Film captures a year in the life of a kindergarten where able-bodied kids are immersed in a world of wheelchairs, walkers

Take an enriched, full-day kindergarten that brings learning to life through an onsite dinosaur dig, rainforest and milking farm. Add 21 four-to six-year olds, half of who use walkers, wheelchairs or splints. Season with devoted teachers and assistants, student interns, committed parents and a healthy mix of empathy and disability-awareness training. Place in a school for children with disabilities.

“What you have is the crucible of the very best elements possible to make integration work,” says Tina Hahn, director of How come you walk funny? - a documentary that chronicles one year in the life of Bloorview’s integrated kindergarten. The film - which aired on the Discovery Health Channel last month - set out to answer whether inclusion could work “in this perfect little classroom,” Tina says.

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.
Filmmakers shot about 160 hours of footage in the school, on field trips, in children’s homes and at social events, such as birthday parties.

“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 technology

Tom Chau awarded Canada Research Chair for devices that interpret intent behind eye blinks, hand gestures

Imagine your child has lost the ability to speak following surgery, and neither you nor the medical team can decipher why she’s agitated. Is she in pain? Is she cold? Does she fear you’ll leave?

Now picture your child with a serious swallowing problem. Every time you sit down to feed her, your heart pounds as you wait to see if she’ll aspirate.

Tom Chau is finding ways to circumvent these disabilities, bringing together intelligent computer chips and software to interpret the communicative intent behind a critically ill child’s eye blinks or hand gestures, or recognize unique throat vibrations that signal the onset of aspiration, prompting parents to intervene.

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 ”
Tom supervises biomedical students at the University of Toronto and conducts most of his research at Bloorview, which he describes as “the premiere location if you want to work with children with disabilities.

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’

William used to fall three to four times a day.

“I might just be standing there, and my (prosthetic) knee would give out,” says the 12-year-old.

That instability is a thing of the past thanks to a new prosthetic knee William is testing for Bloorview.

This knee automatically locks when William extends his leg - preventing falls that occur with other knees that require kids to place weight on their foot before stabilizing.

“We wanted a system that would be safer,” says Jan Andrysek, the rehab engineer at Bloorview who designed it.

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 fit

Massive limb use study aims to help therapists track which prostheses work best for children at different stages

Today’s artificial arms are powered by advanced microprocessor-driven myoelectric technology that allows users to do a vast range of two-handed tasks.

But prostheses for children are a little trickier. For one thing, an eight-year-old girl who lives on a farm will use her artificial limb to do different activities than a 12-year-old boy who lives in the city, so the same prosthesis may not be the best option for one of them.

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

Diet that chemically mimics starvation controls or reduces seizures in most kids who don't respond to drugs

Three years ago, Debbie May felt like she was losing her child.

Ashley - then 11 - had complex seizures, as many as 10 a day despite taking regular cocktails of anti-seizure medication. Bursts of electrical activity in her brain - combined with medication that made her groggy - made it difficult for her to focus and learn. At the same time, “she was rapidly losing her motor skills, making it hard for her to do the one thing she loved - skate,” Debbie says. “She cried a lot and said: ‘My legs don’t work anymore.’”

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

'Muscles emit a small, low-frequency vibration but it's never been used before for prosthesis control'

Our muscles murmur as they contract. Now, researchers at Bloorview will harness those sounds to revolutionize the way prosthetic limbs are controlled.

Muscles emit a small, low-frequency vibration that can be heard with the human ear, but it’s never been used before for prosthesis control,” says Tom Chau, co-ordinator of intelligent systems research and project leader.

The plan is to design and embed tiny hybrid sensors - which measure sound and vibrations - in below-elbow prostheses. That will allow researchers to develop a silicone device that rolls on comfortably like a sock, and is more functional.

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.


A teaching hospital affiliated with the University of Toronto


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