For people with disabilities, the need to stay fit starts early

By Louise Kinross

Last year we reported that 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.

The numbers were shared at a consensus-building workshop at Holland Bloorview that brought international experts and families together to address weight management.

Canadian Living has an excellent piece on this topic in its November magazine: Staying fit when disabled.

Many of you will recognize Joanna Miedzik, who's interviewed in the feature about her own struggles with weight growing up with spina bifida. Joanna is one of Holland Bloorview's amazing receptionists.

The story includes research from scientist Amy McPherson in the Bloorview Research Institute and commentary from Lorry Chen, one of our clinical dietitians.

Most important are four tips to help your child with disabilities stay active. Click on the link above.
 

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Get your kid active at Variety Village

By Louise Kinross

Check out this video of Rick Mercer spending a day at Variety Village, the fitness and sports club in Scarborough, Ont. for people with and without disabilities.

Variety Village’s physical design, accessible equipment and welcoming culture make it easy for kids and adults of all abilities to enjoy exercising.

Now the club is offering families who receive services at Holland Bloorview a great deal: a free four-month membership to children aged four to 12 years and two free programs—or a subsidized annual membership to families of children with disabilities.

E-mail Lindsay Mulock at lmulock@varietyvillage.on.ca to learn more. The offer ends Feb. 28!

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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.

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Where everybody knows your name

By Louise Kinross

Ben's done an amazing co-op program at Variety Village this year. He works at the club two to three days a week, cleaning equipment in the cardio room, counting inventory and helping members get set up on machines.  

Anyone who's been to Variety Village knows it's an exceptional place. There's a sense that everyone belongs: young and old, those who walk and those who wheel, those who speak and those who don't.

Today I went to visit Ben because he was having an assessment with a physio. I noticed as we walked around the track (he on bike) and through the halls that people stopped to recognize him. A guy in a wheelchair held up his fist to bump Ben's fist. Another one gave him a high-five. I was introduced to CEO John Wilson and he shook my hand and thanked me for Ben's contribution. Even an older gentleman who was walking around the track knew Ben.

Ben was relaxed and knew his way around. Did I say Ben was relaxed? Incredibly relaxed. He smiled while riding the bike. As we put it away he showed the physio and I one of the hand-powered bikes and signed that he wanted to try it too. Then he took that one all the way around the track as well.

This surprised me. For the last couple of years Ben's done very little exercise. We've struggled to find something that he can do and enjoys.

The only bike that ever worked well for Ben was an adaptive bike he used while an inpatient here at Holland Bloorview. He loved cruising around the halls and it gave him a great sense of freedom.

I wanted to get him one of his own—until I learned that it cost several thousand dollars.

I couldn't understand why it was so expensive, because the parts all seemed to be standard ones that are mass-produced. Welcome to the world of "specialized equipment" and its inflated price points. We'd tried to adapt regular bikes ourselves but without success.

Today I began to see how Variety Village's physical design and accessible equipment and welcoming culture made it easy for Ben to enjoy exercising.

The physio said an adapted bike would be wonderful for Ben. She also told us about personal training offered at Variety Village. The club isn't close to us, but I began to see how much it's worth the drive. Maybe my family could start working out there.

I've had some disturbing personal reminders recently of how unwelcoming people and places can be to people who are different.

A few weeks ago, Holland Bloorview life-skills staff presented findings of a review of 56 studies on friendship for youth with disabilities. Research shows that in general typical peers interact in a superficial way with disabled youth.

I get that. I see it.

And that's why I don't take anything about Variety Village for granted. What they've created is priceless.

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Virtual exercise game connects kids with cerebral palsy

Holland Bloorview is marking World Cerebral Palsy Day with a demo of the Cycle to Fun project that combines exercise bikes and a virtual video game to motivate kids with cerebral palsy to exercise while having fun and making friends.

"Our study is focused on kids who are using a walker and who might typically have moved to a wheelchair for longer distances," says Dr. Darcy Fehlings, a developmental pediatrician at Holland Bloorview who's partnering with computer science professor Nick Graham at Queen's University.

"We wanted to develop a game that's fun and keeps their muscles strong so they can continue walking with a walker. We find that they grow a lot in their teenage years, but their muscle strength doesn't increase, so they become more tired when moving and that leads to a decrease in fitness. What's also unique about our project is the idea that we can use networking to decrease social isolation."

Youth can log into the game and pedal and play together, getting their therapy done while making friends. 

The game is still in the research stage. For more information, contact Lauren Switzer at lswitzer@hollandbloorview.ca.

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Stepping out: Moms move from cautious to confident

Five children who attend Holland Bloorview's Play and Learn nursery school are participating with their moms in an adapted kids' version of a Toronto triathlon called Family, Fun, Fit on June 1.

The idea came from Andrea Haefale, a phys-ed teacher and marathon runner whose daughter Bella, 4 (above), has developmental delay and autism.

The kids' triathlon is a 15-minute event that begins in the wading pool, moves to adapted trikes, and then walking or wheeling in wheelchairs.

It's a bold step for a mom who used to hold her daughter back from public places.

"I wasn't so open about my daughter a year ago," Andrea says. "I wasn't confident to bring her to a place like the Science Centre or zoo. I was worried people would be asking: 'Why doesn't she walk? Why doesn't she talk? Why is she still drooling?'"

Andrea says that after her daughter's diagnosis she had little contact with other parents of kids with disabilities. "We were alone. Then when I brought her to Play and Learn and met the other parents there, it was like 'Wow, I'm normal. I have problems and some of these people share the same problems I do.'"

Andrea says that talking with other moms in the hallway, going for coffee while their kids are at preschool, participating in Play and Learn parent discussions and having playdates has been "almost like a support group for us. Meeting other moms really helped me be able to come to an acceptance that hey, there are a lot of other people living the same life that I do. And these moms want their children to participate in things other kids do. We want to bring awareness to other parents."

Andrea says the acceptance she's found at Play and Learn has extended to other parts of her life. "This is the first year where I'm able to talk about my daughter openly with my colleagues and friends, and have the confidence to go out, too. I used to be so embarrassed because Bella drools profoundly and still wears a bib. But now if someone asks me about it I can say: 'Yea, she drools a lot.'"

Andrea says she's no longer cautious about letting Bella try new things. "I want to introduce her to as many activities as are out there. I want to give her an opportunity to try it, and if she doesn't like it, we've tried our best."

Andrea received a flyer about the triathlon and contacted the organizer to find out if they could adapt the event for children like Bella. This will be the first year children with special needs participate, she says. "All these people are willing to have us be integrated into this race successfully, and for our kids to be active."

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Making the sea accessible

A Greek man who became disabled as a result of an accident inspired Seatrac -- a device that allows him to get into the water on his own.

A great way to mark International Day of Persons with Disabilities today, which is about removing barriers. The World Health Organization reports that 15 per cent of the world's population -- or one billion people -- live with disabilities.

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Skate soccer: 'This is all I got'

Rollaball is a film about a group of Ghanaian polio survivors who are pioneering an extreme sport that combines skating and soccer. Very cool!

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Hey kids -- get mom to read this!

I have a wonderful Ryerson journalism student working on BLOOM this summer. Her name is Megan Jones. Here's a piece she did on the benefits of video games for children with cerebral palsy. The image left shows a child's skeleton while playing Wii tennis, as captured by a motion tracking system. This allows scientists to calculate to what extent the wrist, elbow and shoulder were used during the game.

Hey kids -- get mom to read this!
By Megan Jones

Active video games like Wii Fit may have physical benefits that play a role in rehab for kids with cerebral palsy, according to a study published online in the Archives of Physical Medicine and Rehabilitation.

Seventeen children participated in the pilot study, and were observed as they played four games: Wii Bowling, Wii Tennis, Wii Boxing and Dance Dance Revolution. During play, researchers monitored and documented the kids’ motion, energy and level of muscular activity. After playing the games, participants filled out a survey about their level of enjoyment.

Researchers used this data to evaluate the potential therapeutic benefits of the video games. They found that while the games couldn’t replace more vigorous or formal exercise, they were effective in providing enjoyable therapy focused on specific joints and movements.

In children with one-sided weakness for example, Wii Fit acted as a fun way to exercise and strengthen weaker limbs. The games also relied heavily on fast wrist movements. Many children with cerebral palsy have difficulty extending their wrists, and continuous, quick, wrist muscle use could help to improve this.

Elaine Biddiss, a scientist at Holland Bloorview and the study’s lead investigator, says it's worth looking at the role of technology in rehab because it can help to engage children. She believes video games in particular can improve kids’ participation.

“Video games incorporate a lot of the characteristics we would like to see in physical therapy and motor- learning programs,” Elaine says.

“Kids are rewarded with points, there’s feedback provided so they see how well they’re doing in the games, and you can change the level of difficulty.”

Most importantly, Elaine says, children have fun.

“It’s something that kids would be willing to do in the home, whereas practising traditional exercises might be laborious,” she explains.

Although the study’s findings were promising, Elaine says that using the Wii system did present the team with challenges.

Some children found ways to “cheat,” as the sensor in the Wii remote couldn’t tell the difference between a small wrist flick and a full arm movement. Kids sometimes made smaller movements, using less physical effort, but still achieved success in the games.

As a result, Elaine recommends that parents monitor their children’s play. She also suggests they encourage kids to put the same degree of movement into the virtual games as they would in real-life sports.

Finally, parents should discuss the way their child is using the system with therapists to ensure that the games are being played therapeutically.

Elaine says she and her current team see the pilot study as a starting point, and she hopes that further research and technological development will lead to more effective gaming systems.

“The Wii is not the tool that’s going to provide the best quality therapy,” she says. “But based on the success of this study, we’re working on developing better games and systems that are targeted towards therapy.”

The team is looking into the use of camera-based systems, which would be harder to cheat with. They're also hoping to design games which would allow therapists to tailor goals for individual children.

“We’re still a ways away, but we’re hoping that these games will maximize the potential of low-cost technology that can be used in the home,” Elaine says.

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The upside of going downhill part 2!

This piece is written by a member of Holland Bloorview's family advisory committee. Thank you to our FAC!

Before children, my husband and I took yearly ski vacations. We looked forward to getting away and enjoying the great outdoors. We travelled near and far. We flew and we drove. We’d go anywhere where there was snow. We lived for these vacations. We liked the sport, the sights, the food and the culture. We eventually took our ski vacations in Italy because it was cheaper to ski in Italy than to ski in Western Canada. What a great lifestyle.

Then we had kids. Screeching halt to skiing! Then we found out that one of our children had cerebral palsy. We thought our ski days were over.

Not so.

Our children’s nursery school teacher told me about a sit ski that allows people with physical disabilities to get out on the hills. Maybe one door for a certain type of vacation had closed, but another door had opened.

We went to the Toronto Ski and Snowboard show and asked reps from different resorts if they had an adapted ski program. We also asked if their childcare program could care for a child with disabilities. We had to think of logistics: Could we push a wheelchair from the parking lot, hotel or gondola to the daycare centre or wherever else we needed to go? Because a wheelchair doesn’t go through snow.

The responses from the resorts were varied. We concentrated on those with a good daycare program because we knew that our kids (then three years old) would not want to spend the whole day outdoors. We found out which places would offer us a one-on-one worker for our son. Some places you have to pay for the worker and some places you don’t.

The first year, we went to Silver Star in British Columbia. The kids enjoyed the daycare while my husband and I went skiing.

The next year, we went to Sun Peaks (also in BC) and our able-bodied daughter took a ski lesson while our son (the one with CP) was happy to be pulled around in the toboggan.

We found that we were treated better by the airlines when we flew with a wheelchair than when we were travelling with a stroller. In addition to boarding the plane first, they quite often had someone meet us at the gate when we arrived at our destination to offer assistance and escort us to the next gate or baggage claim area. You, of course, have to show the airline personnel how to release the wheelchair brakes! We also didn’t put a lot of “stuff” on the chair such as bags, knapsacks etc.

When we were at Sun Peaks it was at the same time as the Canadian Association for Disabled Skiing Festival and the Para-Alpine Canadian Championships. There were skiers from all over the world with different disabilities: blind skiers, sit skiers, amputees. It was inspirational to watch these athletes compete. They didn’t let their disability stop them from enjoying the sport so we tried to learn how we could do a family ski vacation too.

The Sun Peaks adapted ski program took our son out for a couple of runs in their sit ski. A sit ski sort of looks like the sled used for dog sledding. It was an exciting and emotional experience to ski with our son for the first time because what we thought wasn’t possible was possible after all! The adapted ski people were so kind to us that we decided to continue taking family ski vacations.

On the Internet we found out that Vermont has an adapted ski program -- Vermont Adaptive at Pico Mountain. We started going to Killington Mountain for March Break. The Friendly Penguin Daycare supplies us with a one-on-one worker for our son at no extra charge. The first worker happened to be a nurse. There was also a doctor who had recently graduated working in the daycare. They don’t guarantee this type of worker but all the workers we’ve had in the past three years have been excellent. The daycare said that they will take kids up to the age of 13 even though it's aimed at children who are five and under. They will supply a worker unless the child has behavioural issues. The parent has to give any necessary medications. Our son required diapering and help with feeding. We let the daycare know in advance what kind of help we needed and they did their best to accommodate us. The more information you share with the daycare, the better your child’s experience will be. Information such as what your child likes to eat or play will make for a better vacation for all.

Vermont Adaptive has a pediatric-size sit ski. Considering how much one of these things costs, I was amazed that they had one. Since we ski at Killington, we pay a small fee for Vermont Adaptive to bring the sit ski from Pico to Killington. We book the sit ski sessions in advance through Vermont Adaptive. It costs more if you book the same program through the resort.

Vermont Adaptive sends one or two volunteers to take our son out for as many runs as he'll tolerate. We learned that our son gets cold quickly in the sit ski, even though he normally runs hot, so we put on his regular cold weather gear and then a blanket on top of everything at the beginning of the session. You need to have two people to lift the sit ski onto the chair lift. So my husband helped the Vermont Adaptive volunteer lift the chair. I don’t know if the ski lift operator would get involved. Bring your own helmet unless you don’t mind your child wearing a loaner helmet worn by many other people.

In our son’s case, the sit ski is held from behind (like a dog sled) and is controlled by an able-bodied skier. We went down the regular ski runs so you have to watch out for other skiers.

Our son is verbal but not always able to express himself well. But we know that he enjoys skiing by the smile on his face. We hope that if you dream of a family ski vacation, you too will find a way to make it happen. Good luck and happy skiing!

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The upside of going downhill

 





















The upside of going downhill
By Ijeoma Ross

We happened upon skiing almost by accident. Four years ago we had a bad case of cabin fever. Canadian winters are hard with a child in a wheelchair. Going down south or on a cruise was too expensive. Cruising online we happened across Maine Handicapped Skiing (now Maine Adaptive Sports and Recreation) based at Sunday River Ski Resort.

We couldn’t believe that our son Deane could go skiing at Maine Adaptive for free (the group offers free lessons to children and adults with physical disabilities). Deane, who has cerebral palsy and uses a wheelchair, would be taught to ski by volunteers. And we could ski with him. We booked five afternoons and over March Break drove to Sunday River.

The team at Maine Adaptive was amazing. They have an occupation therapist and equipment “doctor” on site who assessed Deane’s strengths and abilities and adjusted and adapted equipment for him. Their building is slopeside so the skiers can get fitted and go right on to the hill.

It is a busy place with volunteers and skiers of all abilities coming and going. Deane and his “team” made up primarily of his father (Mark) and a good friend (Ali), who is a keen skier, were immediately welcomed. Because of their experience, expertise and friendliness, we will be going back for our fourth year in March.

For the first two years, Deane skied in a slider – the front of a walker on skis with arm rests for him to help support his weight while on his own skis. A volunteer would control his speed and direction from behind using straps attached to the slider.

The volunteers were more than willing to teach Mark and Ali how to control the slider. By the end of the second year, the volunteers were there primarily in a teaching role.

Other family members and friends could ski down the hill with Deane - as long as we stayed out of the way!

This past year we switched to a sit ski because Deane had the beginnings of hip dysplagia. Deane was more than happy with the move. Because the sit ski is more stable it can go faster and Deane loves speed. Now I’m working to keep up with him.

For the past two winters, we have also been skiing with the Canadian Association of Disabled Skiing (CADS) at Brimacomb Ski Hill outside of Oshawa.

There are provincial branches of CADS across the country with different ski hills running programs. In total CADS has 1,130 skiers assisted by 1,900 volunteers to participate in recreational and competitive snow skiing and snowboarding.

At Brimacomb, a team of dedicated volunteers take 30 skiers out on the hills for one of three 1.5 hour lessons each Sunday for eight weeks during January and February. All equipment is provided by CADS.

It is a tight-knit group of instructors, volunteers, family members all there to help the skiers get the most out of their time on the hill.

All of the instructors and volunteers must be trained on all of the equipment from sit skis to harnesses for blind skiers and three-track outriggers for leg amputees. Family members are encouraged to take the training so they understand the process. The cost is $110 for participants and $35 for volunteers to cover the insurance.

It was at Brimacomb that Deane first moved into a sit ski. Mark and Ali were trained to drive (holding on to the back bar on the sit ski) and tether (holding a strap while skiing behind as an anchor). In our first year, I found it difficult to keep up with the speed of sit ski.

This year, I have learned to tether and have loved being a crucial part of Deane’s skiing.

There are not many activities that both Deane and his sister Rayne, who is not disabled, can do together. Skiing is one of them. It has become an integral part of our family’s recreation.

On the iPad Deane uses to communicate, he will readily tell you that he likes the chair lifts, the sit ski and going fast. What we thought was just a rash idea to cure cabin fever has become a way of life for all of us.

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Vote for Busy Bodies!

A seven-week program designed to get young kids with disabilities hooked on fun, physical activities is vying for a $50,000 grant from the Maple Leaf Sports & Entertainment Team Up Foundation Fund.

You can vote for Holland Bloorview's Busy Bodies program today and everyday until Feb. 20 (click on View the candidates, then click on Holland Bloorview Kids Rehabilitation Hospital Foundation).

Research shows that children with physical disabilities take part less in social, recreation and physical activities than peers.

Busy Bodies gets kids with disabilities aged seven to 12 out once a week to try creative dance, yoga, sledge hockey and wheelchair basketball.

Read about the difference the program made in Cassidy's life (above).

Then vote!

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Freedom for my daughter






















I'm delighted to share another post with you from a parent member of Holland Bloorview's Family Advisory Committee. Louise


Freedom for my daughter

My daughter (above) is a fabulous, bright and fun little girl. She was born with athetoid cerebral palsy. She is affected in all limbs, as well as in her speech and overall control and balance. She will be six this summer.

Last year we began working with a doctor in a coaching role, to help coordinate our daughter’s therapies and organize our goals.

When she was four, she was seeing six different therapists and going to over 10 therapy sessions a week. At the same time, she was not making progress and anything new we wanted to try caused tension with the therapists we had.

With the help of the coaching doctor, we got focused and took control of the therapy program, working on measurable goals that were a priority for us and having all our therapists work together to create a plan for our daughter. There was improvement almost immediately – in our daughter’s strength and abilities as well as in our stress levels. It was and continues to be a challenge to get our therapists to communicate effectively, but it's worth the effort.

Last summer the doctor encouraged us to try it a water exercise program she had developed. We had never tried anything like this and were excited to try something new. We got our daughter a hydrofit wet vest -- a unique wet suit style floatation vest designed for athletes, so that she could do deep-water jogging three times a week. We hoped to improve her balance, encourage reciprocal motion in her legs, and build up strength and stamina.

The improvement was phenomenal. Our daughter had been taking swimming lessons for a year but it was a challenge because she had trouble controlling her body in the water. It seemed that when she went into water she became more spastic and had more uncontrolled movements than on land. Generally, she can sit well on a chair or bench, but when the swim instructors wanted her to sit on a table in the water with the other kids, she couldn’t keep herself up. Floats and glides were difficult even with a lot of assistance.

The wet vest changed all that. My daughter could sit easily on the table and float and glide on her back with minimal assistance. Needless to say, her swim instructor was pleased. The vest provided my daughter with just the right amount of input and floatation. It was so much better than a typical life jacket, which would just tip her right over.

When we first started with water jogging, my daughter had trouble keeping herself upright, even with the vest. It was a new experience and it took time for her to learn this new skill. She quickly progressed to being able to keep herself upright for two to five seconds before falling over to the side or onto her back. With more and more practice we saw this time improve. After three weeks she was able to stay upright and jog for 30 seconds consistently. After four weeks she could do a minute. By the end of the summer, she could jog on her own, easily, for more than 10 minutes at a time. I'm a good swimmer and 10 minutes of treading water is tiring for me, so I was impressed. Not only could she tread for an extended period of time, but she was doing it totally on her own, she had good form, was in control of her body and was having fun.

The improvement in my daughter’s stamina and strength was noticeable out of the pool too. Even though she had lots of therapy, before last summer she didn’t really have any cardiovascular exercise. She couldn’t run and play like other kids and tired easily. This is no longer the case. Her strength and energy improved greatly. This allowed her to walk longer distances in her walker and translated into an improvement in speech volume.

All that aside, the most amazing thing that came out of the water program was independence for my daughter. She is so physically limited that before last summer, she was never without an adult to hold or support her. Now, she has unrestricted movement in the water. She can swim on her own. We can swim together as a family, for fitness or fun. She began to wake up every morning asking to go swimming or saying that she had a wonderful dream that she swam to one place or another with one of her friends. I will never forget the look on her face the first time she jogged from one end of the pool to the other on her own.

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She shoots, she scores!

I received this moving story from David and Carol Fisher who run a hockey team in Peterborough, Ont. for players with physical, emotional or neurodevelopmental challenges. David and Carol have two adopted sons with disabilities and their eldest daughter, who has cerebral palsy, attended Holland Bloorview's nursery school years ago.

Check out a very special moment in hockey history, described below by the Fishers and coach Dale Lowe, on this Youtube video.

We are called the Kawartha Komets Special Needs Hockey program. We now have 35 players on two teams aged six to 41 years of age. We are part of an organization in Canada called Special Hockey International and we just returned home from a tournament in Boston. This event was attended by over 1,000 hockey players who were part of 68 teams from across Canada and the U.S.

As the undefeated Junior Komets entered their final game against the Steel City Icebergs of Pittsburgh, it was clear that our team was faster and more skilled than its opponents. Realizing this, our juniors quickly adapted their game, showing a tremendous amount of empathy for the Icebergs. Then, the most incredible, spontaneous act of sportsmanship happened in front of the Steel City net.

Brandon of the Kawartha Komets gave the puck to 6-year-old Nicole Mullins of the Icebergs. As you will see in the video, Nicole uses a custom-made walker created by her father, fully equipped with her hockey stick. Nicole was born with hip dysplasia. She has two dislocated hips, two short-bent femurs, and two club feet. But, special needs hockey has allowed her to be part of a team and achieve her goals.

After Brandon put the puck on Nicole's stick, the entire Komet line skated the length of the ice beside her, and watched her score a goal -- as fans from both sides cheered wildly. Afterwards, there were tears running down the cheeks of many of us who had witnessed this unprompted, unscripted act of sportsmanship. We have never been so proud to be part of a sports program.

Brandon, the young man who passed the puck to the little girl, has lived in group homes since age five and was always told he could never play hockey. He has a developmental delay and is a natural on the ice. He has never played hockey before and is incredibly intuitive and versatile.

We wanted to share this story with you to encourage parents of children with disablities. Some time ago you had an article on the BLOOM blog about a father who had a little boy who suffered a stroke in utero. The father expressed concern about the challenges his little guy would face in life with one side of his body paralyzed. Our junior goalie also has hemiplegia and plays goal without a goalie stick. He is very good because his father and his brothers, who are very athletic, have been taking shots on him since he was a toddler. He is the goalie in the video and his name is Colin. I would love for that father to see that video because I feel it would be very encouraging for him to see that sometimes children learn how to compensate for the challenges in life that they face.

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8 a.m. workout

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Triumphant return

Ben returned ecstatic from another training session tonight. He spent more time on the treadmill and used new equipment. D'Arcy said Ben really enjoyed it and felt a sense of accomplishment.

This is quite a contrast from the 50 per cent Ben received in physed on his last report card. I couldn't understand why he scored "good" in most of the related items (e.g. work habits) but did so poorly if the program is adapted to his disabilities (unless he refuses to participate).

I heard an interesting interview on CBC radio today about researchers who have developed exercise guidelines for people with spinal-cord injuries. This is a related CBC The National broadcast.

Queen's University researcher Amy Latimer followed 700 Ontarians with spinal-cord injuries for 18 months and found that over half reported no recreational physical activity at all.

"This is often more to do with the nature of the barriers people with spinal-cord injuries face in trying to exercise, rather than because of the nature of the injury," Latimer says, noting that many gyms don't provide accessible fitness equipment.

Next steps for Latimer's team are to look at exercise best practices for people with multiple sclerosis.

These guidelines are exciting, but we need accessible gyms and attitudes to go with them!

A couple of months ago I spoke to Holland Bloorview researchers about partnering with a fitness club to develop exercise programs for children with disabilities. We plan to brainstorm this idea.

I thought GoodLife, where Ben is a member, was a perfect fit because CEO David Patchell-Evans has a daughter with autism and has donated $4 million to autism research. But I heard from GoodLife that they thought the investment in equipment would be too high.

With new exercise guidelines for adults with disabilities, and with parents of children with disabilities eager to get their kids active, I believe an untapped market waits.

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'Just be kind'

Here's a pic of Ben (with brother Kenold) just after his first personal-training session at the club last night. As you remember, I wanted to sign Ben up at our club because his physiotherapy has ended and he really needs exercise. But, I was filled with angst about whether the club would be welcoming to a person with disabilities and whether Ben could even use the equipment because of his tiny stature.

Things in general went great last night. Ben's trainer is called Michael, and he's a very upbeat, positive, accepting person. The evening began with the monstrous stair climb from the lobby to the exercise floor. Michael felt this would be part of Ben's workout. And as Ben climbed one set of stairs, only to turn the corner to another, and another, a young man stopped and squatted down to cheer him on. "I hate these stairs too!" he said.

As Ben limped onto the exercise floor (we still don't have a lift for his shoe) and took in the flurry of bodies twice the size of his in a whir of movement on treadmills, bikes and elliptical machines, I felt a surge of pride. This kid has guts to keep going and keep trying despite the obstacles against him.

Michael took Ben for a walk around the whole gym -- as we're trying to build his walking endurance but he also wanted to show Ben everything. Then Ben did three minutes on the treadmill (Michael wants to start him slow). He got him doing repetitions on a cable machine (pulling his outstretched arms which were holding the handles back to his sides). Then he adjusted a weight machine for the arms and took some of the weight himself so Ben could do it. Finally, he had him do steps and stretching.

Everyone wants him to do well, I thought, as I sat on a bike, looking around. While there are elite athletes here, there are also people of all shapes and sizes, some of whom are just starting out. Everyone remembers what it's like at the beginning, I thought, when the shortest cardio session or lightest weights leave you breathless. Everyone is rooting for him, and he'll feel it.

As we climbed down all those stairs, people stopped to say hello or offer an encouraging word. Michael presented Ben with his new fitness bag.

Then Ben and D'Arcy showered and sat in the whirpool.

"I thought people were very welcoming," I said later.

"I don't think they really knew what to make of us," D'Arcy said, referring to Ben's appearance as a much younger child.

But it doesn't matter, I thought.

I'm sure there will be bumps, but Ben got to feel successful at working out. He broke a sweat, took a swig of a water bottle, and heard Michael praise and encourage him. He was ecstatic after his workout, no doubt because it got his endorphins going.

Later I was reading Buddhist nun Pema Chodron and she talked about this slogan from a Tibetan text: 'Be grateful to everyone.'

It's "about making peace with the aspects of ourselves that we have rejected," she said. "The people who repel us unwittingly show us the aspects of ourselves that we find unacceptable, which otherwise we can't see."

She talked about a meditation student she worked with who was making great strides recovering from a drug addiction, then went on a binge. When she expressed disappointment to her spiritual teacher, he got angry. "You should never have expectations for other people," he told her. "... Setting goals for others can be aggressive -- really wanting a success story for ourselves. When we do this to others, we are asking them to live up to our ideals. Instead, we should just be kind."

That really hit home in terms of parenting a child with disabilities. 'Just be kind' sounds like a great starting point -- for the way we interact with and support our children, and the way we treat ourselves as parents, without judgment. Maybe it's my own struggle with success, I thought, that makes it hard for me to accept the unconventional path Ben is on. Maybe that's something I need to look at more closely.

I got goosebumps watching this video tribute to Zack Hamilton: Paul's video tribute to Zack. Louise

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Game to boost fitness, friendship

Scientists at Holland Bloorview and Queen’s University are developing a virtual-reality game that promotes fitness and social networking for teens with cerebral palsy. I interviewed Dr. Darcy Fehlings (left), co-principal investigator, to learn more about this two-year project.

BLOOM: What is the goal of this research?

Darcy Fehlings: To develop a fun, virtual-reality game that youth with cerebral palsy can use to improve their fitness and interact with other kids through a social-networking platform.

BLOOM: Why is exercise important for teens with cerebral palsy?

Darcy Fehlings: We find that they grow a lot in their teenage years, but their muscle strength doesn’t increase, so they become more tired when moving and that leads to a decrease in fitness. Their body is bigger, so there’s more mass to move, but they don’t have an increase in muscle strength. Our study is focused on kids who are using a walker and who might typically have moved to a wheelchair for longer distances. We want to develop a game that’s fun and keeps their muscles strong so they can continue walking with a walker.

BLOOM: What would the game look like?

Darcy Fehlings: The teen will hold a playstation controller that moves an avatar. They will sit on a recumbent bike in front of a computer or TV at home, and the faster they pedal, the more they control the game. Queen’s University has a lot of expertise in modifying games so that if two students have different fitness levels or physical disabilities, they will be perceived as equal. Their effort will result in the same impact. So no one will be discouraged because they’re playing with someone at a different ability level. Dr. Nicholas Graham is the co-principal investigator at Queen's.

BLOOM: How does the game improve a person’s fitness?

Darcy Fehlings: The bike gives them a cardiovascular workout and builds leg strength. But we’re not only interested in improving physical fitness. We want to engage teens in the social networking aspect of the game. They will participate in the design of the game so it’s something they’re interested in.

BLOOM: Is there anything like this on the market?

Darcy Fehlings: Nothing that’s geared to youth with cerebral palsy and physical mobility issues. We’re taking advantage of the explosion of virtual-reality exercise programs on the market. What’s also unique about our project is the idea that we can use networking to decrease social isolation.

BLOOM: How will the game be developed?

Darcy Fehlings: We have a collaborative team of experts in cerebral palsy, virtual-reality exercise, programmers and our youth with cerebral palsy. They will work together in focus groups to develop the game concept. The virtual platform is already in place so we need to develop the game more from the storyline perspective.

BLOOM: How will the game be tested?

Darcy Fehlings: We will do baseline testing of fitness level, whether they're still able to use their walker, how much they walk each day and social quality of life.

BLOOM: Who is funding the project?

Darcy Fehlings: It’s being funded by NeuroDevNet, a Canadian Network of Centres of Excellence. NeuroDevNet’s focus is to bring together basic scientists and clinicians working with children with cerebral palsy, autism and fetal alcohol syndrome.

Photo by William Suarez

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Wanted: an integrated gym

This post has nothing to do with kayaking, but with the expression on Ben’s face (right).

This is how Ben looks every time I pick him up after his weekly physiotherapy session at Holland Bloorview. He’s ecstatic and chipper and obviously coming off of a workout “high.” He doesn’t get a lot of exercise during the week, but this hour of walking on the treadmill, climbing stairs and tossing a ball in the gym leaves him in a sweat.

I can only imagine that he would benefit from more of it.

It made me think it would be a great business opportunity for someone to start a gym for kids with and without disabilities. It would need to have a physiotherapist and perhaps other professionals who could oversee the activities for kids with disabilities. We would be one of the first to sign up!

It reminded me of a conversation I had with Amy Baskin, author of More than a Mom last week. I interviewed Amy about children with significant developmental disabilities who age out of high school at age 21, but have few opportunities for meaningful activities during the day, leaving their parents to scramble to create a good life for them.

“Why doesn’t some entrepreneur say: ‘There are all these adults looking for something funky to do’ and come up with something creative, like a cooking club?" Amy said. "There’s a whole group of people not being served and often money isn’t the issue. It’s that there’s nothing to purchase.”

I’d love to hear of innovative businesses you know that have sprouted up to target the needs of kids or adults with disabilities.

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Ballet in the water

Patty Daly contacted me to tell me about a sport that welcomes children with disabilities: synchronized swimming.

Patty’s daughter Lauren, 18, has cerebral palsy and has been doing “synchro” since she was 10. Her duet partner – Nicole Flynn, 16, has Down syndrome, and the pair compete in Ontario and nationally (see photo).

The sport has had numerous benefits for Lauren “and I would like to get the word out to other families so they’re aware this opportunity exists,” Patty says.

Synchro Canada says clubs across the country have programs for athletes with disabilities – many integrated into regular programs. Our next issue of BLOOM will include a role model column with Lauren and Nicole. Here’s what Patty has to say:

“Synchro has given Lauren a sport that she’s been able to excel at, the opportunity to swim with peers, confidence to swim in front of an audience and most importantly, she sees the rewards of doing therapy.

Before the girls head into the water, they do land drill, which includes stretching and strength-building. It’s the same in essence as what Lauren would do in therapy, but it isn’t labeled “therapy.” All of the able-bodied athletes do it with them, so they aren’t singled out as a result of their disability.

When Lauren has her appointments at Bloorview, they’re always amazed that someone with her disability is as flexible as she is and is able to do the splits. I have tried to get the word to these doctors that this is all a result of synchro.

Synchro has given Lauren confidence in school as well and has taught her how to manage her time (if she didn't get her homework done, she wasn't able to go to synchro). She’s successfully completed her training as a lifeguard and spent the last two summers working at an overnight camp. She’s also a member of her high school swimming team, advancing to the provincial championships every year.

This coming year, Lauren and Nicole (her duet partner) are hoping that they might have the opportunity to swim in Japan!

Every synchro club is encouraged to include swimmers with physical and cognitive disabilities. In the water, disabilities are not as pronounced. The coaches work with each child to maximize their ability.

I think there are other parents out there who have children who could greatly benefit from synchro if they only knew about it. ”

(note: Synchro Canada’s Aquasquirt program is open to boys and girls)

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