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Slip slidin' away

By Louise Kinross

Yikes.

The Canadian winter is treacherous for youth who use wheelchairs or walkers finds a Holland Bloorview study published in Disability and Rehabilitation last month.

Researchers interviewed 12 youth aged 15 to 22 who use walkers and power or manual wheelchairs about the challenges they face getting around in winter.

Their comments paint a stark picture:

“In the slush and snow my walker seizes up” explains one participant, who notes that she falls regularly and has broken her leg “more than once.”

From a power wheelchair user: “With public transit sometimes their ramps don’t work…because it’s cold so the hydraulics don’t work…So even if the bus comes, the ramp doesn’t work. So you wait for the next bus. I have times where I waited for four buses.”

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

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

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

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

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

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

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

Researchers found that youth with walkers had more serious challenges in the winter than those with wheelchairs, due to smaller wheels on their devices.

Clinicians must ensure youth get proper training on maneuvering their wheelchair or walker, and enlisting mentors may be helpful, researchers said. Expanding clinic times should be considered to recognize the extra time it takes to get to appointments and to leave enough time to assess clients for signs of depression. A winter survival guide could include tips for spotting hazards at street crossings, maintaining wheelchairs, dressing appropriately and recognizing signs of frostbite, as well as a list of adapted local activities.

Research neglects alarming obesity rates in disabled children

By Louise Kinross

Children with disabilities are two to four times more likely to be overweight, and two to four times less likely to be physically active, than their peers, according to Dr. James Rimmer, a professor in the School of Health Professions and research chair in Health Promotion and Rehabilitation Sciences at the University of Alabama.

Despite these alarming numbers, the bulk of U.S. government funding goes to research into weight management for typical children, Dr. Rimmer said.

Dr. Rimmer was speaking today at a consensus-building workshop at Holland Bloorview in Toronto bringing together international experts and families to look at research to address weight management in children with disabilities.

Dr. Rimmer shared a number of American studies that showed dramatically higher rates of obesity in children and teens with physical and intellectual disabilities and lower rates of participation in school gym class and recess and extracurricular activities. “There is a tendency to not take these children out for physical education or recess and to involve them in more sedentary activities,” Dr. Rimmer said. In addition, after-school programs and playgrounds in the community may be inaccessible.

“We have to teach society that there are ways to adapt programs and include kids with physical and cognitive disabilities,” Dr. Rimmer said.

In addition to being socially isolated, youth with disabilities and obesity are more likely to have a host of secondary conditions such as high cholesterol, asthma, pressure ulcers, fatigue, depression, low self-esteem, high blood pressure and liver and gallbladder disease.

“My mission in life has been something called inclusion,” said Dr. Rimmer, noting that he has an adult daughter with autism who has been excluded from preschool and playdates since she was three. “Doctors need to understand that there are many associated consequences of obesity.”

Dr. Rimmer said that some tools that screen for weight issues don't identify problems in kids with certain kinds of disabilities. For example, using body mass index, which is a ratio of height to weight, doesn't work with children with paralysis.

Factors influencing the association between disability and obesity, he said, include: increased dietary intake; less physical activity; decreased fat-free body mass; lower resting metabolic rate, which is the rate at which you expend energy while at rest; and poorer heart function.

Despite the prevalence of obesity in children with disabilities, a disproportionate amount of U.S. government funding goes to research into weight management for children in general, Dr. Rimmer said.

He referenced a 2010 chart from the National Institutes of Health showing 116 federally-funded studies on obesity intervention for the general child population, compared to only eight studies targeted to children with disabilities. Dr. Rimmer noted that research on the general population typically excluded children with chronic medical conditions and genetic syndromes and those who don't walk or take medication.

Dr. Rimmer said we need to learn from weight management programs that have been effective for the typical child population and adapt them for children with disabilities. “We need a systematic framework for developing guidelines, recommendations and adaptations.”

Dr. Rimmer spoke of a model that included convening an expert panel to assess whether existing guidelines target the disability population and creating focus groups where parents and youth with disabilities evaluate proposed adaptations. “We always find multiple holes in our recommendations after we go through the family focus groups,” he said.

Dr. Rimmer said it's generally not that difficult or costly to adapt programs, and that two common areas that need attention are training instructors on how to work with kids with disability and developing disability-friendly parent education materials.

Overall, adaptations should consider the built environment, such as the need for a ramp or access from a vehicle to a field; appropriate equipment; inclusion of all children in every game, sport or activity in and outside the class; and instruction for staff, for example, in how to communicate with a child with autism.

Dr. Rimmer said obesity is associated with carbohydrates and “our rates of obesity can come down demographically if can get refined carbohydrates, such as high fructose corn syrup, out of our diets.”

Inclusion is a right, he said, not a privilege.

Furniture that fits every child

By Megan Jones

Despite the many sights in New York, it was children’s furniture that stopped Jason Nolan in his tracks.

While walking the city during a trip in 2008, the Toronto-based early childhood studies professor and some friends came across a striking Manhattan storefront. Behind the large window was a collection of kids’ furniture. Each piece was brightly coloured, each was different and individual. The group instinctively stopped and moved in closer.

As they examined the furniture through the glass, they realized it was handmade. Slowly, it dawned on them: the chairs and stools and rockers were custom pieces for kids with disabilities. Jason (photo centre) is autistic and one of his friends uses a wheelchair. The group was so fascinated that they knocked on the storefront’s door—they felt compelled to know more.

They were greeted by Alex Truesdell, founder of the Adaptive Design Association, who invited them up and explained her project to make custom adaptive devices for children. Jason’s first thought was that the furniture must be expensive. It was, after all, made and sold in New York. But, Alex told him, it was actually the opposite—they were giving pieces away for free if families couldn't afford them or if there was no funding. After all, they cost less to design and build because each object was made from cardboard.

As he walked out of the studio, Jason began conceptualizing how he could bring these devices to Canada. Over the next few months he returned to New York to learn from Alex and her team. After being taught how to make a few pieces, Jason started to build his own in Toronto.

Parents took immediate interest. “We had people saying ‘I need something right now,’” Jason explains. So he teamed up with a student at Ryerson University, where he works, and began to experiment with building on campus. They bought a set of tools and used cardboard from recycled student projects to make their first prototypes.

Initially, they designed a corner chair—essentially three pieces of cardboard in the shape of a two-faced, hollow tetrahedron. The chair was made custom for a three-year-old girl who could not sit up independently, and had previously needed an adult to hold her while she played in the sandbox. When the girl attempted to play with other kids while being held, they ignored her.

But once she could play on her own using the bright orange and yellow chair that Jason and his student designed, other kids no longer registered her difference. Within minutes, they began communicating, and brought their games to her. One of Jason’s graduate students documented the group of kids over the course of a year as part of her thesis. She found that during that time, the girl’s preschool classmates continued to modify their play without having to be asked.

For Jason, that is what adaptive design is all about: changing the environment the child is in, as opposed to changing the child. “For me, children aren’t disabled, I’m not disabled,” he says. “Society disables us. The problems that children with special needs have are created by society. Either by how we physically build the space, or how we engage other people.”

To Jason, cardboard is the best material to use because “it’s the greatest visual metaphor,” he says. “It’s a discarded thing. And people with disabilities are largely discarded.”

But it also has practical advantages. Cardboard is available essentially anywhere in the world, he explains, and it doesn’t necessarily require expensive tools to build with. Without scissors or a blade, someone could rip cardboard using their hands. Without access to glue, a would-be builder could use leftover rice water as an adhesive.

“It’s not got any sort of colonialist baggage. It’s equal for us all. But it’s also reminding us that we should be looking at all the objects in our lives to figure out how we can change them to be useful for us.”

Despite its potential simplicity, very few people are doing adaptive design, and designers are geographically spread out. Jason and his students at Ryerson work closely with Alex's design association in New York—the professor recently joined their board of directors—but for the most part groups are few and far between. One of Jason’s goals is to create a global social network so that everyone experimenting with designs can communicate. He recently submitted a research proposal to build an adaptive design studio in Ghana. Earlier, the Ryerson Lab was visited by students from Japan. But, Jason says, innovation moves too quickly for groups to be in occasional contact.

“It’s not enough just to get information out,” he says. “We have to have a two-way continuum. As soon as someone learns something from me, they’re going to say, ‘That’s nice. I have a better idea.’”

Today, Jason directs the EDGE Lab in a newly renovated workspace in the Bell Trinity Square Building behind the Eaton Centre. He still works with a group of students, but their designs have expanded beyond custom furniture. Jason’s space is littered with piles of prototypes, which he shows off enthusiastically: open source computer hardware, a shoe designed to warn people with low vision about tripping hazards, a 3-D printed prosthetic arm.

None of their designs are mass-produced or sold for profit yet. At any time, about a dozen people are working on designing and building, but since they’re students, the groups turn over nearly every 13-week semester. Parents requesting specific devices for their children go through the university. Jason’s biggest challenge is figuring out a way to harness enough builders to meet the volume demands from parents. “I’d love to be running off two or three of these a day,” he says, pointing at a corner chair. “But we’re not there yet.”

Still, Jason hopes that some objects will be commercialized. One student, for example, recently created dollhouse–sized furniture that looks like the real-life pieces Jason and his team build. They are looking to mass-produce the toys at cost and sell them to daycares, with the hope that if children get used to playing with adaptive technologies from a young age, they won’t view them as a sign of difference later.

Jason also plans on outsourcing assembly of the real-life furniture as well. He’d like to be able to sell pieces to families at an affordable rate, not for profit. His ultimate goal is to work solely on design, and have someone else manage the business aspects.

Until then, he will continue to push for a change in attitudes by doing what he does best: making and creating. “Being autistic, I still primarily make sense of the world through physical exploration,” he says. “I communicate by making something for somebody.

“Everyone needs what I’m doing. We’re all going to need some kind of custom adaptation at one point in our lives. The difference is children with special needs can’t function without it.”

Photos by Annie Sakob and Jason Nolan

Free to move, free to learn

By Louise Kinross

For three months researcher Coralee McLaren watched 20 kindergarten children play in the Bloorview School—some with disabilities and some without—to study the relationship between how they moved and their physical environment.

Recent brain research shows that when children are free to move naturally they interact with objects and features of their environment in a way that promotes learning.

But what does this mean for children with disabilities whose mobility is restricted?

“What we discovered was that not only do the physical features of the class elicit creative ways of moving, but movement itself, and the children’s interactions and how they move together, generates new ways of moving,” says Coralee, a professional dancer who was studying the children for her PhD thesis in nursing. “By watching the other children move, or being caught up in the physical energy of their movement, the children with disabilities were drawn into different groupings and found non-habitual ways of moving where they experimented with their bodies.”

Even when children aren’t moving, research suggests that watching peers at play can trigger brain responses similar to those activated when children are playing themselves.

The findings could have implications for how classrooms are designed and provide additional evidence for the benefits of inclusive education.

Coralee, who watched and filmed the kindergarten children’s unguided play and interviewed them about it, was fascinated by how the children used objects to change the way they moved and their environment.

For example, they modified a pretend cockpit chair in a mock space station set up by teacher Paul Alcamo.

“It was a scooped chair with a base that was detachable to give you the feeling you’re flying in a rocket,” Coralee says. “When they discovered they could take the chair apart they turned it into all sorts of things. They’d get rid of the base and make a teeter totter and hook up levers and straps, and they’d tip the seat like it was a swivel chair, and they’d use the base to climb over and around. Some of the children that used wheelchairs and walkers abandoned them and crawled, using the floor and the shelves to propel themselves around the space, to integrate with their peers and experiment with the chair.”

In addition to the pretend centre, Coralee looked at how other physical elements of the class—the chairs, the space between tables, the pathway that connects two sides of the class and the wheelchairs and walkers themselves—generated movement.

“I asked one little non-disabled boy ‘If you had a choice to move any way that you wanted to in the class, how would you move?’ He said he wanted a wheelchair like his friend because he can move so fast and I can’t move that fast. The chair became a non-issue because it was the speed and capability of his friend that the boy found remarkable.”

Coralee and scientist Barbara Gibson just received funding from the Canadian Institutes of Health Research to co-lead an interdisciplinary team of researchers on a three-year study that will use artistic and scientific methods to build on this doctoral research. Coralee is now a post-doctoral fellow at the Bloorview Research Institute, housed at Holland Bloorview Kids Rehabilitation Hospital in Toronto.

In the first year of the Moving Together study, researchers will develop a dance-play event that integrates objects and choreographed movements to try to elicit some of the creative encounters Coralee observed in Bloorview's reverse-integration kindergarten. Children’s muscle and brain responses will be tracked.

In the second year, children at a school for physical disability will participate in this dance event with peers without disability.

In the third year, the dance-play event will be performed by children with diverse abilities in an immersive live theatre lab at McMaster University in Hamilton, Ont. “We’ll measure neurologically and physiologically what’s happening with children when they’re moving in this space in an artistic way, and we’ll also measure the responses of the audience.”

Coralee says the findings could inform how integrated classrooms, hospitals and medical clinics are designed. “We want to tease out this social piece of how movement itself incites movement. What is it about children moving together that starts to change their movement? How do children with disabilities start to move differently simply by being integrated and moving with their peers?”

Illustration by Jana Osterman.

Mice are key players in study of autism drugs

By Louise Kinross

Holland Bloorview and SickKids have received $2.5 million from Brain Canada to conduct a five-year trial of new autism medicines in children and mice.

Testing drugs at the same time in humans and mice has produced promising results in cancer treatments and is a first for autism research.

Identifying the genetic change that causes a specific type of autism can predict whether it will respond to treatment. But “there are too many different types of autism that we can’t figure out the biological subtype based on looking at a child’s behaviour,” says lead investigator Dr. Evdokia Anagnostou, child neurologist at Holland Bloorview’s Autism Research Centre.

“We’re learning a lot about genes that map on different pathways, but in humans these genetic differences account for a very small number of kids,” Evdokia says. “So we don’t have enough kids for each of the genetic variations to study them properly.”

Enter the mice. “We can engineer lines of mice that carry a specific genetic difference associated with autism and then study their brains and responses to treatment.”

Over the five-year period, two drugs will be trialled in children and six in mice. After two-and-a-half years “the most promising compounds in the mice will be put in the humans and we will continue testing other compounds,” Evdokia says.

Being able to test drugs in mice with a specific genetic mutation “means we can take drugs that exist for a completely different reason, that have nothing to do with autism or development, but which we know affect the pathway we’re looking at.”

Human studies will be done at Holland Bloorview, McMaster Children’s Hospital and the Lawson Research Health Institute. The mice trials will be run at SickKids.

Immigrant moms hit a service wall

York University researchers Nazilla Khanlou and Mahdieh Dastjerdi (above) share the findings of their study on the experiences of 30 immigrant moms in the Greater Toronto Area and their service providers. Rich findings about the barriers faced and how we can better support immigrant families were offered at this BLOOM speaker night.

Mama and Dad

Slip slidin' away

Research neglects alarming obesity rates in disabled children

Furniture that fits every child

Free to move, free to learn

Mice are key players in study of autism drugs

Immigrant moms hit a service wall

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