Click click. Dress your chair with stylish, snap-on accessories

By Louise Kinross

It’s a bit of bling for the wheelchair, and security and control for the user.

Lucy Jones—named one of the world’s brightest entrepreneurs by Forbes magazine in 2016 for designing clothes for people who use wheelchairs—launches a new line of wheelchair accessories today in New York City.

A small US$49 metal clamp with a dock that fits on manual wheelchair tubing is being sold with two leather clutch bags and a cupholder that attach with magnets. It allows you to snap and secure a bag or cupholder to your wheelchair.

The smaller bag—available in electric blue, hot pink, tangerine, yellow and black—is perfect for credit cards, keys, a phone and cash. It costs US$108. The slightly larger black bag is made for people who want to carry more makeup, or other stuff, close by. It goes for US$138. Check them out in this video.

“In focus groups, people were often telling us that they were sitting on their phone or wallet or keys, because they had nowhere safe to put them,” says Lucy, whose new company is called FFORA. “That could cause pressure sores.” 

Other people carried things openly in their lap. Lucy recalls that one of her friends, who has multiple sclerosis, used to ask her to go into her bag, which was hanging on the back of her chair, to get things. “I often wondered, ‘How is this safe?’ The community wanted fashionable bags, but they often had to jury-rig them, or hack them, so that they fit on their chairs.” 

Lucy says it was a challenge to make a clamp that was light, sturdy and small, and something people would want to leave on their wheelchair. Early users say the product, which comes in champagne, silver and midnight black, “looks like a piece of jewellery.”

When attached, the dock swivels at 360 degrees, so users can position it in a way that doesn’t interfere with their movement. “It can go anywhere along the lower wheelchair tubes. We have one guy who places it behind his leg, and others who have it up high beside their knee cap facing forward, and others who position it outward.”

Lucy, and her team at FFORA, had to create a product that would work with seven different wheelchair tube sizes. “We’ve created seven different silicone inserts,” she says. “On our website, the customer will check their wheelchair model and brand, and when the product is shipped, it already fits their chair.” 

About a dozen wheelchair users aged 22 to over 60 trialled the products for a week at a time, then came back to review what worked and what needed tweaking. “One of their biggest asks was that we make something that was functional and easy-to-use but also cool and stylish, something that their sister or mom might want to use too,” Lucy says. “If you don’t have a disability, and love the bag, you can wear it across your body with a strap. These bags are competing with the rest of the small leather bags market.”

Also in the line is a US$25 cup holder that fits in the wheelchair dock—so you can take your coffee with you, and not worry about spills.

The new line only ships in the United States, but FFORA hopes to expand to Canada and Europe in the next year. Lucy and her team are working on ideas for products targeted to kids. “Imagine Disney or Marvel. Imagine if we could get a license, so a child could have their super hero character in a cup design?” Plans are in the works to create an attachment that fits on electric wheelchairs and scooters too.

In 2016, BLOOM interviewed Lucy about her clothing collection called Seated Design for wheelchair users. She developed it as a graduate student at the Parsons School of Design in New York.

Lucy says she named her new company FFORA to recognize all of the wheelchair users she’s worked with. “When we had focus groups, it felt like this was a real honest place where people could make their opinion heard,” she says. “It was a forum. I didn’t like the word ‘forum,’ so I changed it to fora, which is the plural of forum. Then I added the double F, purely for selfish reasons. I’m Welsh, and I wanted to make the word look Welsh. In Wales, there are a lot of double Fs that make the ‘F’ sound. I thought it would be unique. Now we think of the two Fs as symbolizing fashion and function, or form and function, and being future-forward.”

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Carrying friend in backpack, next stop China

By Louise Kinross

In 2016 we told you about Kevan Chandler's trip to Europe with friends who carried him in a modified backpack when places wouldn't accommodate his wheelchair. Kevan, who lives in Fort Wayne, Indiana, has spinal muscular atrophy and weighs about 65 lbs. Sitting in an adapted child carrier worn by his friends, Kevan and the group hopped over stiles in the British countryside, climbed up 600 rock steps to an Irish monastery, and checked out the underground cemetery in Paris. 

Since then, Kevan and his friends have released a film of their European travels and started a non-profit group to promote accessible travel. Kevan now has his sights set on a trip to China in 2019. We did this interview by e-mail.

BLOOM: Why did you decide on China as your next tour?

Kevan Chandler: Even while we were in Europe, the guys and I talked about visiting China. One of our guys has a niece and nephew who were adopted from China, and he'd gone with the family to get them. So we had that connection and perspective, plus we had interactions with numerous Chinese tourists while in France, which helped to prompt the conversation.

It's an old, magical, and exciting place to explore, and like anywhere in the world, it's also a place where we could maybe be an encouragement in regards to disabilities. Then, last year, a great door opened for us to connect with an organization called Show Hope that serves orphans with disabilities there, which really solidified the idea to go.

BLOOM: Will you be using the same backpack and also taking your wheelchair?

Kevan Chandler: We have a newly developed backpack, along the same lines as the original, but more professionally done. We'll be using that, and like our last trip, we won’ be taking my wheelchair.

BLOOM: Are you travelling with the same friends who carried you through Europe?

Kevan Chandler: We will have the same film crew, and two of the four carriers. The other two guys just had other stuff going on. So, we've added two other carriers, who are friends of mine from Fort Wayne. We will also have a translator with us and a project manager, who will keep us on track.

BLOOM: You plan to visit a series of care centres for children with health issues and disabilities supported by Show Hope. Why?

Kevan Chandler: Yeah, we are really excited for the opportunity! I'm reminded of what Jesus said about kids, and I can't help but see the Kingdom of God in these little ones and the folks working with them. So much need, so much vulnerability, and so much love to redeem it all. Who wouldn't want to be part of that? Our hope is to be encouragers of the good work that's already being done among the kids and care staff there. We can't wait to spend time with them, play, share our story, hear their stories, and also take some backpacks like mine for the staff to use with the kids.

BLOOM: Do you know what percentage of these children are adopted? 

Kevan Chandler: I'm not really qualified to answer this. And at the same time, we as a team are more focused on the current circumstances of these kids and meeting them in that, with the bit we can do to help. It's important to be faithful with what's in front of you to do, right?

BLOOM: Where will you be staying on the trip? 

Kevan Chandler: We plan to do some exploring around both countrysides and cities, but the Care Centers of Show Hope will be kind of like our hubs that we come back to and spend most of our time.

BLOOM: Are you anticipating any challenges in China that you didn’t experience in Europe?

Kevan Chandler: Well, there is the language barrier! Haha! There is that, but also a pretty extreme difference in culture that we will need to navigate. These are all things we dealt with in Europe, especially France and Wales, but China just takes it all to the next level, so we will have a translator traveling with us to be of assistance.

BLOOM: Are there particular places or historic sites you’re eager to see?

Kevan Chandler: Yeah, we are excited to visit the Shaolin Temple and the Great Wall, for starters!

BLOOM: I think you raised about $35,000 US to cover the cost of your Europe trip. How many weeks will you be in China and what will the total cost be? Is there a link to your funding page?

Kevan Chandler: Yes, and we were pleased to end up on a similar budget for this trip to China. With travel included, we will be gone about three weeks, like with Europe. This trip is budgeted at $40,000US, which makes sense because it's farther and our team is a bit larger (nine of us vs. the seven that went to Europe). We just launched our GoFundMe page this week, and since we're now a 501(c)3, any donations are tax deductible.

BLOOM: I notice you are taking a translator. Do any of you speak Chinese?

Kevan Chandler: Nope. That's why we have the translator, a really cool friend of ours from China who lives nowadays in British Columbia.

BLOOM: What messages about disability do you hope people take when they see you on your trips?

Kevan Chandler: I think it's bigger than just disability. We are all broken in some way or another, and we're all looking for some relief. So, when folks see a guy carrying another guy whose brokenness is so clear, I hope they see themselves.

What I love most when I travel is when walls come down and people just start sharing honestly about their own lives and experiences. It's a stark expression of what we all feel and desire inside, so we act as a kind of ice-breaker for people to look inward and dig deep. My hope is that that winds them up at a place of peace, whether they are encouraged or challenged, because both—if received—end up at the same place.

BLOOM: You said you’ve started a non-profit called We Carry Kevan since your Europe trip. Do you sell backpacks like the one you use? What does the non-profit do?

Kevan Chandler: We did start a nonprofit! We are working with Deuter to develop a backpack like mine for mass-production. Our hope is to have them available in the Spring of 2019. In the meantime, we are customizing a few backpacks ourselves here and there, and we are also taking time to tour, speak, and spend time with people.

Our mission statement says it best: ‘Believing in the inherent value of all people, We Carry Kevan mobilizes individuals with disabilities by redefining accessibility as a cooperative effort.’ That job of redefining involves a lot of examples lived out and a lot of conversations had, and it's been amazing to see those opportunities come with the nonprofit these past few years.

BLOOM: Do you know of any other people with disabilities who were inspired by your Europe trip to try to do something similar? I’m imagining that the backpack option only works for people who are very light?

Kevan Chandler: It's been wonderful these past few years to see, hear from, and meet folks, both disabled and able-bodied, who are inspired by our adventure. And the backpack was just our way of doing things. It will work for some people and not for others.

But the the backpack isn't the be-all and end-all. It's a tool to exercise the deeper idea, which is that accessibility comes with courage and creativity and people working together. So it's been awesome to see people getting that and acting on it in their own way. It's been a joy to come alongside them in their adventures.

BLOOM: Are you still working as a sound editor producing podcasts?

Kevan Chandler: No, actually! Just recently, I stepped out of that career to give We Carry Kevan my full attention.

BLOOM: What are your thoughts on the new treatment Spinraza for people with spinal muscular atrophy? Is this something you are interested in pursuing?

Kevan Chandler: I'm excited to see its positive effects on my sister as she participates, and my hope is that it does provide relief and strength for folks with SMA who go that route. I am personally not involved at this time.

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'We're the custom tailor for people who use wheelchairs'

Koolway co-founders Jennifer Gallienne and John Cook with head cutter, sewer and pattern designer Vienna Liu.

By Louise Kinross

Jennifer Gallienne is co-founder of Koolway Sports, a premium Canadian line of coats, capes, boots and mitts designed for children and adults who use wheelchairs.

“Our outerwear is for people in wheelchairs who want to go out and enjoy life and be warm, comfortable and dry,” Jennifer says. “The reason people come to us is they can't find anything off the rack that has zippers in the sleeves—to make it easy to put on and take off—a half back for comfort, shoulder openings for chair straps, and little g-tube openings. 

“We work with every body shape. We work with children who use traches, and can't have fleece in the top of their coat. In one of our focus groups, a woman said that while she was running, the blanket she had on her child in the stroller kept falling off. I sat on the floor with her and drew a picture of a blanket with a zipper, like a bunting bag, and said 'Is this what you want?' That's how our product is developed—through parents, or the person in the chair, telling us what they need and want.”

Jennifer runs Koolway out of a home studio in Whitby, where she works with a team of professional industrial sewers who make the coats. “We're paying top wages and buying top-of-the line fabrics and notions from Toronto, Montreal, Calgary and Colorado. We make quality coats that last 10 years.”

Koolways sells its products worldwide, with about 75 per cent of orders coming through its website, says co-founder John Cook, who is also president. Before taking an order, Koolway asks customers to watch a video on how to take six key measurements, then confirms sizing on Skype or Facetime, so that they can see the customer’s wheelchair and make recommendations. They also do in-home fittings or group fittings at schools, Holland Bloorview, Variety Village and Whitby Ability Centre.

The adaptations in the coat are designed to reduce dressing time from 20 minutes to two minutes, John says. “For parents and school caregivers, that frees up a lot of time.” The company's most popular product is its winter coat with a detachable front and back blanket. It costs $510 to $760, based on features.

“Our main challenge is the lack of government grants for families who can't afford them,” says John. “If a family doesn't have the resources, we'll try to work with them. We'll contact third parties. Variety International recently authorized our product in some regions as eligible for funding. Sometimes we may have a family within our circle whose child has outgrown their coat, and they may ‘angel gift’ it to another family. We've reached out to Easter Seals, but they raise funds for other items.”

Koolway is partnering with parent-run foundations Three To Be and Peaceful Hearts Georgina, as well as Ability Online, to “matchmake” families who can benefit from a gently-used coat, Jennifer says. “If only people realized that a coat is a necessity.”

Jennifer began Koolway after losing her job as a graphic designer at age 40.

Like the “connector” personality described in Malcolm Gladwell's book The Tipping Point, Jennifer had a knack for knowing people, and using these connections to develop her business idea.

Jennifer's cousin was a seamstress. A parent had asked her to custom-make a coat for her son who used a wheelchair. “I knew dressing was a struggle for people with disabilities, and I said let's go into business,” Jennifer recalls.

As a graphic artist in Toronto, Jennifer had worked in the Fashion District in Toronto. “I used to sit on the street car with Agnus, who was a pattern maker for a high-end designer in my building. I picked up the phone and called Agnus to see if she would design some patterns for us. Do you remember those bug shirts that are made for people who go into the woods at their cottages? I called up the bug shirt man and picked his brain about where he manufactured his products in Toronto. I had to learn everything by trial and error and I did that, picking up the phone and asking people.”

One of the people Jennifer called was John, a neighbour who’d volunteered with Special Olympics when he worked in insurance in Calgary. “It was a Wednesday night and I was watching Dragon’s Den and I got a phone call from Jennifer saying ‘I’ve got a business, would you like to see what we’re doing?” John says. “They needed a friendly dragon and that was me.”

Recently, Koolway reached an agreement with George Brown College’s Fashion Exchange Program to have students help them plot, grade and digitize a cape, so that it eliminates cardboard patterns. “I had no idea this Fashion Exchange existed,” Jennifer says, “then I heard Matt Galloway on CBC’s Metro Morning interview the director.” The program trains students to be industrial power sewers, and includes refugees who were skilled sewers from other countries and need to learn Canadian standards. Koolway has placed an order for over 100 capes.

Jennifer describes the business as a labour of love. “We’re the custom tailor for people who use wheelchairs around the world,” John says.

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A scientist works with toy maker to get disabled kids moving

By Louise Kinross

Five years ago, Cole Galloway had an existential crisis.

The scientist at the University of Delaware was publishing papers about developmental gains in pre-crawling babies who were given robots they could drive with a joy stick.

“Everyone was happy, with the exception of one group—families of kids who needed power wheelchairs,” says the professor of physical therapy. “Their kids are waiting four to seven year to get mobile. When they do, the lightest chair is 150 pounds and costs up to $45,000. Families typically keep them at home or at school, but never in-between, because it’s a nightmare to get them around.”

Cole says he felt like a fraud returning to his lab to churn out studies that wouldn’t benefit immobile kids in the real world. “I either had to give up this work or find a low-cost alternative because the community needed something now.”

He turned to Toys R Us and Fisher Price.

Today, he leads Go Baby Go, a grassroots research and advocacy group that’s adapted 6,000 toy ride-on cars for toddlers with disabilities through 60 chapters, many of them run at local schools. The cars cost under $200 to buy and another $100 to modify with a bigger push button, more stable seating and a safety cage.

Mobility is a human right, Cole says. “When we don’t give a kid a wheelchair until they’re three years old, it’s a failure. It’s way too long to wait. They’ve missed hundreds of thousands of opportunities to move and connect and socialize with their peer group.” Movement gives kids access to a rich environment that helps their brains grow, he says.

A blind spot in research is the absence of families at the table. “Medical researchers are usually taught to have an arms-length distance from users, to work separately from the real world. So the people we purport to care for are not involved in the design of things.” What results is often not nimble or beautiful.

For example, he compared a bulky $10,000 exoskeleton device that helps a child lift their arms with an inexpensive, invisible alternative designed by a colleague: $25 worth of piano wire sewn into a child’s onesie.

“A fashion designer walked into our lab and said: ‘Why do you put things on this population that you purport to love that you wouldn’t be caught dead in?’”

To get closer to user needs, Cole does real-world research. “The perfect lab isn’t a magic building where only kids with special needs go,” he says. “It’s a regular child-care centre, a playground, a living room where I can compare what you’re doing with your typically developing peers. Scientifically we want enriched environments to build big brains and that means leaving the lab.”

Cole is studying a harness system that can be used by people with brain injuries in everyday environments like a house or restaurant—rather than only on a treadmill in a gym.

A lack of innovation characterizes many medical markets, Cole says. “Think of someone working at NASA or in other high-tech programs. If that person, who works on the deepest questions about our universe, has a stroke, the next day they’ll work with 11th century technology. They’ll get a walker. We can do way better.”

Cole is trying to create a mandate for user-centred design. When asked why we don't have more intuitive voice devices for kids who don't speak, he said we need to involve non-verbal kids in how they're made.

Go Baby Go is based on a do-it-yourself mantra. “We’re taking medical equipment and hacking it and taking toys and hacking it,” Cole says.

But while some equipment makers are threatened when Cole adapts their products, the toy industry welcomes him. “They said we’ll work with you, we’ll consult with you. The difference is that they’re innovators. The Power Wheels team at Fisher Price is made up of artists, engineers and researchers. They want to have direct impact. They need to reinvent their toys every year or two, so they’re constantly innovating to make more kids have fun.”

For example, a new Fisher Price driving toy called Power Wheels Wild Thing has universal design features that benefit kids with disabilities. The toy, which costs $250CDN, drives straight and back, spins, and has three speeds. “The seat is deeper and tilted back which likely helps kids with spinal cord injury and spina bifida have fun,” Cole says. Cole says Go Baby Go has already had requests to modify the product.

Cole presented at the CP-Net Science and Family Day at Holland Bloorview recently. Watch his talk.

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How one family's dream of a service dog came true

By Kara Melissa Sharp

I knew Sebastian needed a dog when he was two. He was recovering from pneumonia in hospital, and we hadn’t seen him smile in a week. Then the hospital therapy dog arrived and he beamed.

Four years later I applied for a service dog for Sebastian, only to be heartbroken when he was turned down.

I’d spent months on the 15-page application for a dog trained in seizure assistance. But five minutes after the charity received my package, I got an e-mail saying Sebastian didn’t qualify. Because Sebastian is dependent on others for everyday tasks, they said he was incapable of bonding with a dog.

I was appalled. How could they be so dismissive? Without even meeting Sebastian, or our family, they’d made a decision based on paperwork. Sebastian had already developed a great relationship with a therapy dog at his preschool, so I knew he could bond with a dog of his own. And he wanted one. He’d started to tell his teacher and classmates at senior kindergarten that he had a dog at home because he wished it so much.

I didn't give up and extended my search to organizations throughout North America. I spoke to a few groups that have families fundraise to cover the cost of the dog and training. But the family also needs to cover travel costs for the trainer. Training alone can cost up to $30,000.

There were also organizations like the first charity we tried, where you apply and, if accepted, are put on a two-year wait list. Unfortunately, we didn’t qualify based on our location. I wasn’t sure what to do. I spoke to everyone—even my hairstylist!—to brainstorm ways to get a dog and cover the training.

Our search led us to a woman named Sherry at Swissridge Kennels. Each year she donates a dog to a family in need and organizes a fundraiser to help pay for the dog's training. Sherry breeds Goldendoodle and Berndoodle puppies. I sent her a letter introducing ourselves and asked about that year’s fundraiser. I learned we were in the running! After a few emails back and forth, Sherry came for a visit. She even brought a few dogs to meet Sebastian. It was an exciting day for the whole family! After our meeting, Sherry decided that Sebastian would be a good fit for one of her puppies.

Sherry wanted to wait until the litters would be born in the spring to choose the right puppy for Sebastian. It was a long winter! When we returned from our trip to Australia in May, Sherry had a visit planned to bring along one of the other women who helps with the Swissridge Doodle Romp charity, Karley. To our great surprise, when we opened the door we were greeted by Sherry, Karley and a new Goldendoodle puppy!

Sebastian and this puppy immediately bonded. We were over the moon. There would still be a long wait with training ahead but Sebastian had a service dog! Over the next two weeks we went through every name we could think of before Sebastian chose Ewok.

Ewoks are a race of Star Wars' creatures who look like furry teddy bears and have their own language. I used to call Sebastian my little Ewok when he was a baby because of the sounds that he makes (since he doesn't use words like we do). I showed him a video of an Ewok and asked if he thought the puppy looked like it, and whether it would be a good name. He said yes!

Ewok currently lives with a family to do his imprint training, which is the basic house training, obedience and socialization stuff. He’s started to work with the trainer and soon will live with him full-time for more intensive training to become a therapy and seizure alert dog. Once Ewok is ready, we’ll join in the training sessions twice a week. Then Ewok will come home with us, but we’ll continue to go back to Swissridge for training as needed.

How does all of this get paid for? Through Sherry’s generosity and the community she has created with other Swissridge dog owners, all of the funds have been raised to pay for Ewok’s training. In August we attended the Swissridge Doodle Romp, a reunion of sorts for other familes that have Swissridge dogs. While people drive from all over to meet and connect with other familes and their Swissridge dogs, they also come to donate. And donate they did.

This year the Doodle Romp raised over $25,000. We will not need to personally fundraise or contribute financially to Ewok’s care and training. We are so thankful to have been welcomed into this caring community. While at the romp several photos were taken and one now hangs on Sebastian’s wall while he waits for Ewok to come home.

We’ve talked a lot with Sebastian and his sister, Tallula, about what having a service dog means. We have talked about how Ewok will be Sebastian’s dog. He will sleep in his room. He will go for walks with Sebastian and Sebastian will be in charge of feeding him and giving him water, with our help. We are even programming commands for Sebastian to say to Ewok using his eye gaze with the goal that the trainer will use clips to help Ewok become familiar with Sebastian’s "voice."

We hope that Ewok will help break social barriers while we’re out. We also look forward to Sebastian feeling a bit of independence as it will be his job to care for Ewok. Most Toronto parks are not inviting to kids using wheelchairs. As Sebastian gets bigger it is more difficult for him to be carried up and down the slides and sometimes even the inclusive swings are broken from misuse. Soon Sebastian will have an alternative. He can take Ewok to the dog park!

I grew up with dogs in our home. When I was 11, I even had the opportunity to choose and care for my own dog. Having a dog certainly adds responsibility and creates a life change. But for our family, for Sebastian, I can only see that as positive. Sebastian’s whole face lights up when we talk about Ewok. He loves telling friends and people he meets about his dog. We get video and photo updates every couple of weeks from the family he’s living with, and they’re often the highlight of Sebastian’s week. Sebastian asks questions to learn more about Ewok and what he’s learning, too.

Ewok will be trained to walk alongside Sebastian. He will nudge Sebastian’s head up when Sebastian is tired and his head control wavers. We hope he will be able to notify us if Sebastian is having a seizure during the night or otherwise needs us. He will provide Sebastian a companionship that he will find nowhere else. He will also provide Sebastian a sense of responsibility and independence. Having a dog will help others see that Sebastian is a kid—a kid who loves a dog and loves life.

We don’t have a home date for Ewok because his trainer wants to make sure Ewok is ready for us and we’re ready for him. But he's already part of the family.

Follow Kara at Free as Trees.

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'Merrywood' sparked my passion to work in rehab

By Meaghan Walker

People who say Disney World is the most magical place on earth have clearly never been to Merrywood Easter Seals camp.

Merrywood looks like any other summer camp—with sailboats, canoes, kayaks, arts, music and drama, a dining hall, and cabins.

But a few simple changes transform this beautiful plot of land in Perth, Ont. into an accessible summer camp for children and youth with physical disabilities.

For example, the canoes have beanbags and lawn chairs available for kids who need additional support. The sailboats have deep seats and can’t be tipped by winds. The pool has chairs that can be lifted in and out of the water with a rotating handle. The dining hall has pureed options and adapted cutlery. And the paths connecting all programs and cabins are paved with smooth cement.

When I was 16, my English teacher suggested I spend a summer working at Merrywood.

I thought it would be a summer of learning new skills and expanding my knowledge about different abilities. But it gave me so much more. It became a place I loved like a second home and ignited my passion to study Rehabilitation Sciences this fall.

I’ve now spent four summers at Merrywood—working as a counsellor, cabin leader and leader in training programmer. Each summer I meet campers who teach me more than I could ever learn at home.

My first days at camp I remember wondering if I’d be able to change diapers and shower and feed campers. I was concerned that I would say the wrong things—such as “say your name to the group” to a camper who doesn’t speak, or “stand over there” to a child who may not stand. These fears vanished the moment my first camper rolled in.

Providing care, feeding and communicating in different ways is second nature to the staff at Merrywood. Changing diapers becomes something as natural as tying shoelaces. Feeding someone while eating your own meal is the norm.

We naturally ask questions that offer the camper many ways of providing answers (whether this is asking a yes/no question to a camper who moves their head as a response to each, or asking questions they can answer with pictures on a voice device or photo sheet).

Every person who works or volunteers at Merrywood is changed by it. As staff we receive tremendous training, learn so many skills and meet campers who push us to be innovative in the ways we adapt programs to suit different abilities.

Merrywood is one of the only places that’s fully accessible for campers. Youth are seen for their abilities and personalities, not their disabilities. Campers often say it’s the only place in the world where they can do everything and feel “normal.” Camp is a place of firsts, where youth try activities they can’t access at home.

For me, watching the interactions between campers is the most special part of camp. For example, one year I heard two young men with Duchenne muscular dystrophy talking.

The younger boy eagerly asked the older one, who was about 18, questions about how it felt to lose different physical functions over time.

The older boy answered the questions with patience, optimism and reassurance. This simple conversation has forever stood out in my mind as one of the many benefits of Merrywood.

On departure day parents often tell us that their child is so happy at camp that they count down the days all year. Parents express their confidence in the care provided and are grateful that their child has a place where disability isn’t a factor in taking part and belonging.

Merrywood changes lives every day for campers, staff and parents. The camp provides children and youth between seven and 26 with a fully accessible, inclusive oasis where they can forget about the challenges they face and enjoy camp the way any child should be able to.

Meaghan Walker was a student in the Ward Family Summer Student Research Program at Holland Bloorview this summer.

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Best source of rehab ideas? Parents, says research head

By Louise Kinross

Biomedical engineer Tom Chau came to Holland Bloorview the same year I did—in 1999. Tom trained computer chips to empower children who can’t speak or move in conventional ways. His devices interpreted a child’s hums, eye blinks or physiological signals and turned them into words, a mouse click or even music. For several years I had the privilege of promoting media stories about his work. In 2012 Tom took over as head of the Bloorview Research Institute. Above, members of our children's advisory test out therapeutic video games developed here.

BLOOM: Why did you get into the field of children's rehab?

Tom Chau: I used to volunteer at Riverdale Hospital. My mother created every opportunity for us to interact with people who were going through very significant challenges in their life. At the hospital there were many people with severe disabilities. I helped to feed some of the patients and sometimes my siblings and I did entertainment and played the piano. That’s where I started thinking about how technology could be used. My mother motivated us to have that consciousness and to try to be helpful where we can.

BLOOM: How has our research institute changed since you took over?

Tom Chau: First, we’ve made a number of very deliberate steps to bring clinical practice and research closer together. Our clinical investigator appointments and centres for leadership are examples. We’ve even added ‘clinical researcher integration’ as a competency on all scientists’ performance appraisals.

BLOOM: Why is that important?

Tom Chau: Researchers are trained to ask interesting academic questions, and that’s great if you have lots of money. But because our resources are so constrained, we have to make sure we’re focused on work that will have a near-term clinical impact. The questions we’re asking need to be really important ones, not just interesting or academic ones.

Another change in the research institute is our partnership with families. In large part through the hospital’s robust family leadership program, we’ve been able to jumpstart an engagement program in research. We now have families reviewing research grants before we send them out and doing consultations with researchers where they comment on their ideas.

BLOOM: What kind of changes have you seen?

Tom Chau: One area where families have really helped us is in improving the feasibility of the grant. Sometimes a researcher has an excellent and robust protocol but their idea for how to involve children and families won’t work. So families can help us improve the execution of the grant. They also help us tweak questions. We might be on to something but the question needs to be modified to make it more relevant to families.

The other thing we’ve done in the last four years is raised academic standards. The academic environment has never been as competitive in my career as it is now. Success rates for grants are so low. We needed to raise the bar internally, and today we’re so much further along in publications and external research grants. All of the scientists have stepped up.

BLOOM: What is the current focus of the research institute?

Tom Chau: One underlying thread is our focus on maximizing participation: what really matters to that child and family and can we enable that to happen? We’re not focused on increasing two points on a standardized test when that doesn’t translate into anything in the child’s real life. We have a growth strategy for our four centres of leadership: participation, child development, brain injury and innovation. And our scientists are clustered under those themes.

There’s an increasing emphasis on maximizing brain plasticity. So, for example, there’s an interest in getting children moving at a very young age as infants, even though they may not be able to move in a functional way when they grow up. Having that experience of moving through space—the sensory experience, feeling the wind, feeling the body move through space—may help to strengthen brain networks so that they’re more adaptive in learning other motor skills. We’re learning that the brain is more plastic than we thought—throughout the life span. It gets harder as you get older, but it’s still possible to rewire. And there are things we can rewire that we didn’t think we could rewire and side benefits to forming certain kinds of connections.

BLOOM: What is your role leading the institute?

Tom Chau: The most important part of my mandate has been to build up the other scientists as independent investigators—to grease the wheels or skids for them to take off by providing the resources they need to be as excellent as they can be. That might mean providing bridge funding, helping to support a student, helping them acquire instrumentation, nominating them for external awards to build their profile or editing grants to make them as competitive as possible.

BLOOM: How many students do we have in the institute?

Tom Chau: Over 120 trainees from summer students to post-doctoral students.

BLOOM: What are some of the challenges facing scientists working in pediatric rehab?

Tom Chau: There’s been a real dry spell in federal funding for health research in the last three years and the process has gotten tougher and tougher. Success rates with the Canadian Institutes of Health have never been this low and that’s really discouraging. The first budget from the Liberals already injected something like $30 million into CIHR, so things are going in the right direction, but it will take a number of years to increase the investment.

Another challenge is this small market issue. I was at a workshop in Washington two weeks ago and that was one of the first things the National Institutes of Health identified: we’re dealing with a small marketplace and people don’t like to invest in things that serve a small market. There’s no economic argument. That said, one in seven people in Canada and one in five in the U.S. have a disability, so it’s not that small.

We’re starting to think about potential secondary applications of the work we’re doing that would give us access to larger marketplaces.

BLOOM: Have your thoughts about disability changed over the years?

Tom Chau: Having been a parent myself, I think that I see less of a difference between a child who might be a client here and my own children. They’re interested in the same things, like video games or movies, and may have the same worries. The good fortune I’ve had with students with significant disabilities coming through our doors has opened my eyes in terms of how similar these people are, despite the daily challenges they have. They want to achieve, they want to have friendships.

BLOOM: What have you learned from families?

Tom Chau: Over the years I’ve come to realize that parents are truly the experts. If you think about the innovations we’ve done that people think are so cool and such great ideas—the ideas came from parents. For example, our thermal switch that captures the posture of the mouth was the idea of a mother.

BLOOM: What are you most proud of in the research institute?

Tom Chau: I’m most proud of the people. The people are truly excellent. They’re very collaborative. When a student parachutes in for a couple of months they say our culture is out of this world. They say: ‘I feel so supported here, everyone was so helpful.’ I’m also proud of the fact that we have such an interdisciplinary research institute. Nowhere else will you find such an eclectic mix of disciplines united with a common mission and passion. We have folks doing technology, social science and clinical science all under one roof. All those perspectives coming to the table leads to some really creative ideas.

BLOOM: How do you find a balance between accepting disability/difference and changing it?

Tom Chau: When I first got the Canada Research Chair, we transferred the onus of change onto technology and took it off the child. It didn’t make sense that the onus of clear communication is 100 per cent on a child who is non-verbal, and not on the communication partner whatsoever.

I think what we think we can change is evolving, which goes back to the brain plasticity stuff. I think there’s potential for acquisition of abilities through exploiting brain plasticity that we didn’t know was possible.

First of all, you have to embrace your difference. Then there’s maximizing a child’s participation and an opportunity to teach the individual new skills through brain plasticity, and that’s fine. But we don’t ever want to lose sight of the uniqueness and the irreplaceable quality of the individual.

BLOOM: What are your hopes for the future?

Tom Chau: What keeps me up at night is the calls we get from families whenever there’s a story about our work. We get flooded with calls—not from other scientists—but from our families. There are calls from the U.S. and as far away as Australia. The need is huge and families are still so hopeful that one day their child will be able to express themselves. I hope that in the years I have left I’ll be able to enable access to communication for many more kids and families.

I’m also hoping that we can bring about transformational change in childhood disability. I dream of the day when we have kids on Parliament Hill telling politicians what they need and advocating for themselves. There’s still a lot of change we have to bring about in terms of attitudes.

Find out how you can participate in research at Holland Bloorview.

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Grandma gets UK retailer to adapt clothes for easy access

By Rita Kutt

My grandson Caleb had a very difficult start to life, which included seizures.

Last year when he turned three, his mum Zoe and I started looking for clothes to accommodate his feeding tube and nappies. Until then, we’d been able to buy clothes from the high street stores and supermarkets here in England.

To my dismay, after looking in stores and online, I found nothing available for his age and size. I tried parenting websites for advice, but soon realized that we could only buy them from specialty catalogues.

Parents and carers told me they had to buy from the United States, as even with postage it still worked out cheaper than buying from the local catalogues. Others were using expensive dressmakers to alter their children’s popper vests and sleeping suits by adding material so that they would still fit.

Disability catalogues charge more because their products are specially made. The cost of a popper or snap vest was about $30 in the catalogue, compared with the $2 vests (up to size 3) we could buy in our regular stores.

How would my family afford this new clothing? Caleb’s mum had given up work to care for him. And the family had to pay for private physiotherapy for Caleb, who is still not able to crawl, sit, stand, walk or even have full control of his head. The cost of this new clothing was a huge worry.

Why couldn’t the less expensive clothing, now available up to size 3, be made a little bit bigger, with extra material?

I decided to campaign for more affordable clothing in larger sizes and asked Marks and Spencer if they would help. I chose them because they're a global company and that meant more children and families would benefit. They have dedicated websites in Australia, New Zealand, Canada and the United States, and they deliver free when you spend $50. They also deliver to over 30 countries at varying cost. Marks and Spencer have a great reputation for quality and are a respected company that started out in Leeds, which is my home town. I thought if they were able to order them by the thousand, then surely they would be priced lower.

I wrote to their customer services’ team, and they promised to pass my e-mail onto their buyers. They quickly came back to me and said that they were interested in my proposal and were hopeful they could help.

Soon they were sending sample suits for Caleb to try. My daughter-in-law Zoe has been able to give very positive feedback and has made suggestions about how the clothing can be tweaked. For example, the neck area was a little too large in one item, so they made the opening smaller.

Zoe asked if they could also do styles for older children and Marks and Spencer got in touch with the disability charity Scope UK for advice from families. Scope arranged for parents from their online community to trial sample sizes with their children and send in feedback too, which has all helped to shape the products.

The new range of clothing, launched in February, is more than I ever hoped for!

Initially I just asked for popper vests for older children. Marks and Spencer have gone above and beyond by also making sleeping suits, long and short sleeve items, all-in-ones, and all with easy accessibility for nappy changing and tube feeding. Two of the items have snaps across the tummy for a feeding tube. They are made for children aged 3 to 8 at the moment, with the age range being extended to 16 later this year.

The older children’s styles will be age-appropriate. The clothing is great quality and affordable, and ranges in price from $8 to $15.

I have to admit that a month or two after contacting Marks and Spencer, I had a little wobble and thought, “What if other families don’t feel the need for these clothes?” I asked the company if I could tell people on my Facebook page about what was happening and they said yes.

In a few days I had over 30,000 responses! There were friend requests from strangers and messages from around the world, including India, Spain, Portugal, New Zealand, Australia, the United States, Indonesia and Ireland. All wonderful messages of encouragement that made me realize I had done the right thing, and that thousands of children and their carers would benefit.

People also shared ideas of their own, and it convinced me that we should be pushing ideas to other businesses. After all, if we don’t let them know what’s needed, then how are they going to help?

I decided to set up a new facebook Group entitled Marks and Spencer and Me: Special Needs Clothing so that everyone could put forward their thoughts. We have over 6,000 members and are still growing. Anyone wishing to be kept updated please join. The retailer is in the process of producing more age-appropriate garments for youth up to age 16 and are making some improvements to the existing line.

We're hopeful that this much more affordable clothing for Caleb will be a weight off his parents’ minds, and will help them continue with the private physiotherapy he so needs. Caleb has profound and complex needs. I know lots of families will have their own individual expenses to accommodate their children’s needs. So this should also help them too.

The attention to detail and quality of clothing is what Marks and Spencer do best. This new adapted line has been so popular that many items have sold out, but they’re being restocked quickly. The demand has been unprecedented, which is heart-warming for me.

Thank you Marks and Spencer, for making this happen.

I am one proud Grandma.

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BLOOM story sparks CTV piece on prosthetic designs

We shared this story in our last BLOOM e-letter about an innovative company in Victoria, B.C. that's blurring the line between prosthetics and design with these stylish covers.

Avis Favaro, medical correspondent at CTV National News, says she saw our story and followed up with this broadcast piece. Click above and check out these funky limb covers live.

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How to travel Europe by piggyback

By Louise Kinross 

In April we told you about Kevan Chandler, who was planning a summer trip across Europe with friends who would carry him on their backs when places didn't accommodate his chair. 

The itinerary included hopping over stiles in the British countryside, climbing up 600 rock steps to an Irish monastery, and checking out the underground cemetery in Paris.

Kevan and his friends raised over $26,000 to fund their adventure, and purchased a child carrier modified for Kevan's size. Kevan, who lives in Fort Wayne, Indiana, has spinal muscular atrophy. He updated us in this e-mail interview.

BLOOM: How did the trip go overall?

Kevan Chandler: Oh, it was awesome! Things went smoother than we could've imagined, but it was also balanced with enough challenges and 'wrenches' to keep us on our toes.

BLOOM: What was your favourite part of the trip?

Kevan Chandler: There were so many unbelievable parts to the trip, and I had really special moments with each of the guys who carried me. On one of my favourite days, a few of us went out walking through the fields and woods outside Westerham, in England. 

Our host, Mike, led the way and even carried me for a bit. The countryside was beautiful and it was exactly the sight that I'd seen a thousand times in films or from my van on the highway, and always dreamed of exploring myself. So, this was an especially precious experience to me.

BLOOM: Did you run into any problems while being carried?

Kevan Chandler: The gates at the subway were a bit thin, so we had to watch my knees. And we had to be careful at doorways. When we'd hop a fence in the countryside, the guys had to remember they were a bit top-heavy. There were challenges every day, whether we were in the city or out in the country or staying home. 

Some of them we saw coming, some caught us by surprise, but we just crossed each bridge as we came to them. That was one of the things I considered in choosing the group that came, not that we'd have everything figured out beforehand but that we could be creative and work together to figure things out on the spot.

BLOOM: How did the pack that you were using hold up? Was it comfortable for you and your friend?

Kevan Chandler: The pack worked great. We made more modifications as we went along, but it was a good, sturdy apparatus and did its job well.

BLOOM: What advice would you give others with disability who might want to consider this kind of trip with friends?

Kevan Chandler: It all depends on the person, as to what my advice would be. Generally, I'd say to seriously consider yourself and your team, and decide together how to go about the adventure. A backpack worked for me, but it may be something else for another person. You have to decide first what you want to do, and then go about deciding how you want to do it. Don't be afraid to think outside the box, and if you try something and it's not right, don't be afraid to say no and try something else.

BLOOM: Did anything surprise you about the trip?

Kevan Chandler: Everything surprised me about the trip! I made plans and sorted out details, but emotionally and spiritually, I tried very had to go in with no expectations, just see what happens and enjoy the ride. It was definitely a trip in which you had to roll with the punches, go with the flow, but I think that's the best way to have an experience like this.

BLOOM: How did people respond to you and your situation? Did you meet any other travellers with disabilities?

Kevan Chandler: People were inspired, whether they spoke to us or just watched us from a distance. I think what we were doing was so obvious, they didn't need to know the details to be encouraged by it. I loved being on the subway and seeing someone on the other end of the car glancing at us and seeing a smile come across their face. We made their day without a word, maybe impacted their life more than we know. 

And sure, we had some people who just looked at us with confusion, or they saw us and went on with their day unaffected, but who knows how or if that image stayed with them. We didn't meet any other travellers, per say, who were disabled, but one of our hosts in England had multiple sclerosis, and we did see others in passing who also had various disabilities.

BLOOM: What did your friends who went with you say about the trip? Is it something they'd do again?

Kevan Chandler: They loved it! It was funny to me, because they'd thank me over and over for bringing them on the trip. They were physically carrying me, but they saw it as me taking them to Europe, simply because I invited them. This just shows how great they are and how humble. I think they're all up for another trip.

BLOOM: Did you film the trip so that you can turn it into a documentary? 

Kevan Chandler: Yes, we had a film crew of two and they are now working to whittle that 300-some hours of footage down to a 45-minute documentary. We anticipate a spring 2017 release.

BLOOM: Is the film your next project or are you involved in something else?

Kevan Chandler: I'm pretty hands off with the film. I trust those guys completely with it. For the next few months, I'll be speaking some around the country, and writing a memoir-type novel about the trip. Also, we are working with a few other disabled folks and their families to help them have more freedom to travel as well.

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'Do what you love'

By Megan Jones

This summer, 17-year-old Jeffrey Beausoleil (centre) will crawl through mud, scale eight-foot walls and jump over fire. The young athlete has become a regular competitor in Spartan races—running competitions in which participants battle their way through grueling obstacle courses.

Unlike most participants, Jeffrey was born without his right hand and leg. Still, the Saint-Jean-sur-Richelieu, Que., resident has completed six Spartan races since he began training last year, including Sprint races (5+ kilometres) and Super races (12+ kilometres). This summer, he’s aiming for the Trifecta—by attempting to complete a Beast race (19+ kilometres) on top of a Sprint and Super.

Here, Jeffrey weighs in on building confidence, dealing with bullies and why teenagers need to see more role models with disabilities.

BLOOM: Have you always been an athlete?

Jeffrey Beausoleil: I played a lot of sports in my childhood, at school and with friends—handball, soccer, volleyball, badminton. But I never participated anything as intense as a Spartan race.

BLOOM: Right. Most people would find a timed obstacle course extremely challenging. I know I couldn’t do it. What drew you to this kind of challenge?

Jeffrey Beausoleil: There were two things. First, the Shriner’s Hospital for Children approached me and asked me to participate as a way to raise funds for them. I said yes right away because they’ve done so much for me. They taught me how to walk. How to use a pen. How to do everyday tasks. And I’m very grateful for that.

The second motivation was more personal. I’d played enough sports like soccer, and was tired of games with two nets and a ball. So boring. I wanted to try something different, something more challenging. The Spartan race, with its obstacles and its finish line felt like a good idea.

BLOOM: Raising funds is an admirable goal. But do you also get anything out of the races on a personal level?

Jeffrey Beausoleil: When you’re on the course, you cycle through a lot of emotions. Sometimes you feel happy and other times you think to yourself, “Why did I sign up for this?” But when I finish the race I’m always in a great mood. Most of the time I cry. I think having a disability makes the whole thing more emotional for me. I feel a sense of accomplishment. At the end of the races I always think, “I can’t believe I actually did it.”

BLOOM: What sort of adaptations do you make on the course?

Jeffrey Beausoleil: Every time I race I ask family or friends to come with me. You need to use two hands for some obstacles, so I can’t do them alone. During my first race, my best friend Michel helped me with those.

People at Spartan races are very open-minded. I’ve never seen anyone doubt me me at the race. We’re like a big family when we run. Everyone believes in and supports one another.

BLOOM: What about outside of the racecourse? How do people typically treat you when they first see you in public?

Jeffrey Beausoleil: Some people are scared of me. Especially younger people, I can tell. Older people ask me a lot of questions—about how I got my disability or what kinds of tasks I can and can’t do. Curiosity and fear are the typical reactions I get.

BLOOM: Have you ever felt isolated as a result?

Jeffrey Beausoleil: When I was younger I did. My friends could go out and do stuff that I wasn’t able to do. I also used to get bullied a lot. People used to tease me. That left me with really low self-esteem and I was scared to approach new friends.

Then, when I was 12 or 13 I got jumped. I was getting off the bus and a group of guys that was standing nearby made a rude gesture at me. I made the gesture back at them, and they came over to me. They took my prosthesis off and they beat me up.

BLOOM: That’s awful, I’m so sorry.

Jeffrey Beausoleil: It’s okay. Weirdly, after that was when I started to gain confidence.

BLOOM: What changed for you?

Jeffrey Beausoleil: After I was beat up, I had a conversation with my dad about my disability. It lasted, like, two hours. He told me that he loved me. And he reminded me I had much more courage than anyone else he’d met. He also made me realize that I can’t change my body. Even if I cry or dwell, I will still have a disability. So it sank in that I had to accept myself. There will be doubters and haters all our lives. We need to prove them wrong.

BLOOM: Is there anyone else in your life that’s helped you build that self-acceptance?

Jeffrey Beausoleil: These days I feel really well-supported by my family and my friends, and a lot of times my peers don’t even realize that I’m different, physically. I’m sort of the class clown. I’m the only one that makes light of my disability. Sometimes my friend will be like, “Yo, come and help me hold this,” and I’m like, “I can’t…I only have one hand dude.” They forget about my disability because we’re so close. And it’s better to laugh about my disability than to dwell on it. At the end of the day I don’t feel like I’m different. Because I’m not. I’m not different. I’m differently abled.

BLOOM: What advice do you have for teenagers with disabilities who are still trying to gain that self-confidence? A lot of people say 'believe in yourself.' But that’s easier said than done, no?

Jeffrey Beausoleil: The biggest challenge of having a disability is to be able to genuinely believe in yourself. Because you're always thinking about how people perceive you. It’s not physically having a disability that’s hard for me. It’s what people will think: will they accept me? Will they reject me?

I’d tell other kids with disabilities, 'Do what you love.' If someone tells you that you can’t, don’t listen. Do it anyway. If you can try out one thing you’re afraid of, you might be more willing to try another thing that makes you scared. Over time, you’ll become more sure of yourself.

BLOOM: Do you still spend a lot of time worrying about what other people think of you?

Jeffrey Beausoleil: I rarely worry about my disability anymore. I’m more concerned about what people are going to think of my outfits [laughs]. That’s a classic teenager thing, I guess.

Recently I’ve actually been trying to stand out. I mean, my body is already different. I don’t want the rest of me to look like just another person in the crowd. I want to own that difference. Besides, at my school they all wear saggy pants and big t-shirts. I’m going for a classier look.

BLOOM: Have there been any upsides to having a disability?

Jeffrey Beausoleil: Lots! On top of doing sports, I love to create music. I think I got into that partly as a result of my disability. Music helps me get my anxiety and stress out. Throughout my life, working on music and listening to it has helped give me a break from my problems.

My disability gave me a strong imagination, motivation. If I wouldn't have had it, I wouldn't run Spartan races. I wouldn’t have gotten into music. Honestly, I would probably be, like, a gamer. So overall, my disability is an upside. And I’m proud of having it.

BLOOM: What are you hoping to do in the future?

Jeffrey Beausoleil: My biggest goal is to be able to work as a DJ. Music allows me to express my emotions. I can describe how I feel and who I am and I never feel restricted when I’m making music.

If I become famous, having a disability will be a good business shtick for me. You don’t often see artists with disabilities in music. So people will be like, 'Oh my God, look at this guy. He’s a DJ and he only has one hand [laughs].'

But seriously. We need people with disabilities in sports, music, art. It would be inspirational to younger people. Teenagers need to see role models so that they can believe they’ll grow up and do the same things. I know it would have made a difference for me growing up. I think I would have become more confident younger.

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Why do rehab clinicians need training in 'hope?'

By Louise Kinross

A fascinating document on the role of hope in children's rehab caught my attention.

“Offer hope training to clinicians” is one of three recommendations by the Parenting Matters research team at the Centre for Research on Children and Families at McGill University in Montreal.

Parenting Matters, funded by the Canadian Institutes of Health Research, is studying what it means to parent a child with a disability like autism, Down syndrome or cerebral palsy.

The recommendations for bringing hope into care are based on feedback from 87 parents, clinicians, managers, researchers and policy-makers at a 2014 symposium for the Canadian Network of Children and Youth Rehabilitation and the Canadian Family Advisory Network.

They include:

-Create opportunities for discussion about parent and child hopes where families feel listened to, respected, and supported

-Offer hope training to clinicians

-Align service provision with family goals, needs and hopes

Before drafting the strategies, participants heard about findings from a doctoral study on parent hope by researcher and social worker Sacha Bailey.

Sacha suggested that the idea that "parents who are hopeful are in denial" was a myth. "I showed that parents are quite grounded in the realm of what is possible with their hopes,” Sacha says. "Every family is unique. To assume that what one family hopes for is what all families hope for is not helpful. Hopes shift over time and are often about establishing a new normal."

Participants then broke into small groups where they developed ideas on how to integrate hope into their work.

BLOOM: Why is hope important in understanding parents raising kids with disabilities?

Sacha Bailey: My interest comes from my clinical experiences. Initially I worked with adults with intellectual and developmental disabilities in a community setting. Then when I went back to study to be a social worker, as a student I had lots of experience working with families of younger children with neuro-disabilities and I started to notice that despite their kids' challenges, these families displayed a lot of resilience.

BLOOM: As a parent, I know hope is an awkward topic that can cause tension between parents and clinicians. On the one hand, I've always said that if parents didn't have some hope, they couldn't carry out the gruelling therapy expected of them. On the other hand, as a parent who got stuck on hope for years and years and years, for something that wasn't in the cards for my son, I can only imagine how frustrating it might be for a clinician. I've often thought about what someone could have said to me so that I might have gone up the learning curve faster with my son, so that we weren't spending an inordinate amount of time focused on something he couldn't do.

Sacha Bailey: It is an awkward topic. One reason I chose to do my doctoral study was to understand from the perspective of parents what did it mean when a parent said 'I want more hope' or 'I'm looking for hope' or 'That doctor gave me hope.' Since presenting my findings to working groups, I've been given a lot of good feedback that helped me recognize the tensions around how clinicians understand hope and how families do. Clinicians often bring up the idea of not wanting to give false hope and being a little tentative about giving or encouraging hope.

BLOOM: What are the main ideas about how clinicians can make their practice more hopeful?

Sacha Bailey: To me, the biggest finding from this activity was creating opportunities for conversations about parent hopes. It's as simple as asking parents 'What do you hope for the future for your family and your child?' And also asking the child. It gets back to family-centred care. It's easy to get away from that when each professional has a different focus. We want them to think bigger picture.

BLOOM: So do you mean maybe ask a question about 'what kind of life would you like your child to lead?' as opposed to 'how many steps can he take?'

Sacha Bailey: Even if the parent says 'I hope my child will walk' and in the clinician's mind it's not a realistic goal, that opens up a conversation: 'this is your hope, this is my perspective.' Parents tell me that having the conversation is more important than whether the goal is obtainable.

BLOOM: As a parent I sometimes cut clinicians out who told me something wasn't possible for my son.

Sacha Bailey: For the parent who wants their child to walk, for example, and won't take no for an answer, I think the answer is to continue the conversation. 'What else do you hope for? If your child doesn't walk, how does that change your hope for the future? Are there other ways he can participate that don't involve walking but would still make the future bright?' Instead of getting stuck in the goals of a particular discipline, this opens up the conversation to think a little bit more broadly. Instead of pushing for a specific function, it's about how can the child participate in life activities.

BLOOM: I know some parents say that their child's rehab goals don't necessarily translate into something that improves their daily life.

Sacha Bailey: It's a quality of life issue. Sometimes we come up with these goals without asking the child or the parent. Ultimately, is this going to help you? Is this going to increase your quality of life? Hope is a part of life. Does this child have hope for the future?

BLOOM: We know that parents of kids with disabilities are at greater risk of experiencing mental and physical health problems. Is it possible that hope mediates these problems?

Sacha Bailey: Parents of kids with disabilities have higher levels of stress, depression, anxiety and health problems compared to other parents. When you look at the literature on hope, where they measure hope, it certainly does act as a resilience factor and seems to mitigate negative outcomes. Parents who report more hope also report less depression, anxiety, stress and better coping than those who report having less hope.

BLOOM: How would 'hope training' be offered to professionals?

Sacha Bailey: The idea first came up when people talked about integrating it into curriculum of any program that has clinicians who will work in pediatric rehab. But it also has to be part of continuing education. As a clinician working within difficult systems, it can be frustrating and you can get discouraged, and clinicians need hope sometimes. Continuing education could be an interdisciplinary workshop or grand rounds. These are opportunities to bring clinicians together to talk about how we can help our families be more hopeful in our practice.

Sacha Bailey is research coordinator at the Centre for Research on Children and Families at McGill University in Montreal. She is also a doctoral student in the School of Social Work at McGill.

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