These cool costumes are for kids on wheels

Occupational therapy student Chantal D’Souza wanted to create costumes that work with wheelchairs for inpatients at Holland Bloorview. “I know kids in wheelchairs often get asked: ‘What happened?’ or ‘What’s wrong with you?’ says the University of Toronto student. “I wanted to change that to: ‘Tell me about your costume?’ or ‘How did you make that?’

Chantal volunteered with artists Lynn Simmons and Marek Wojcik in Holland Bloorview’s Centre for the Arts to run a four night costume-making course.

“Don’t worry so much about whether the costume is something that’s Pinterest-worthy,” Chantal advises parents. “The process of creating it themselves is engaging and fun for kids and makes a memory.”

Here are her tips:

• Let your child come up with the idea of what to be.
• Make the structure of the costume from cardboard (your local grocery probably has spare boxes). Stabilize the structure with light PVC tubing from a building store. PVC works great because it bends. For example, one child made a mermaid tail out of PVC tubing that was sawed into circles to create the frame and then covered in fabric.
• Paint the cardboard structure with acrylic paint from the craft store, or cover it in fabric. Go to your fabric store and look for samples.
• One child cut feathers out of cardboard, then painted them in blues and greens and attached them with wire to her larger peacock costume. You can get really cool metallic paint too.
• Use zip ties to attach your costume to your child’s chair without damaging it.
• A glue gun is great for sticking pieces of the costume—like ears—on.
• Think about how you can adapt activities so your child can participate. For example, instead of you cutting the fabric, hold the fabric so that your child can cut it.

“Throughout the process there is a lot of taking the costume and putting it on the wheelchair and then taking it off to make sure you know where to secure it.”

This piece in parents.com walks you through how to make 17 wheelchair costumes.

By Louise Kinross

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How to build a family

Nine years ago Robyn Sheppard welcomed a son into her family through adoption. It was Deion, 7, a student she’d worked with as an educational assistant at the Bloorview School. She and her husband Norman would later adopt Benjamin, also a student in the Bloorview school, as well as their daughter Skylar. BLOOM spoke to Robyn about adopting two children with disabilities.

BLOOM: Tell us about how you met Deion.

Robyn Sheppard: I originally met him when he was two in the Easter Seals daycare where I was doing a college placement. I was only 18, so I wasn’t in a position to adopt anybody. Then I met him again when he was in Grade 1 and I worked as an EA at the Bloorview School. He was going through a hard time. He’d been apprehended from one foster home and moved to another. He missed a month of school and when he came back he was sad and said: ‘I just want a family to love me.’ I would go home and tell my husband about this kid. We were just planning our wedding at the time. ‘Maybe we should look into adopting him?’ my husband said. He’s got a big heart.

BLOOM: How old is Deion now?

Robyn Sheppard: He’s 16 and in Grade 11. He goes to a mainstream high school. He loves Pokémon and he loves to draw and play video games. He has a few close friends he spends his time with. He’s very independent—he manages all of his own self-care and own laundry. He has very mild cerebral palsy and ADHD. He’s a really good kid and we’re very lucky.

BLOOM: How did you meet your son Benjamin?

Robyn Sheppard: Less than a year after we’d adopted our daughter—we adopted them out of birth order—I met Benjamin when he was in junior kindergarten at Bloorview. He was four and not very verbal and just learning to walk. He had a lot of trouble regulating his emotions and his behaviour. He was adorable. He was a little monkey who got into a lot of trouble and had a hard time of things. But he had an amazing smile and was really interested in cars and trucks and police officers. He’d recently moved to a new foster home and wasn’t happy there. We were at an AdoptWalk event and one of the children’s aid workers came up and said: ‘Did you know there’s another child at Bloorview available for adoption?’ We said, no, we can’t do another adoption.’ But the seed was planted and of course we couldn’t just leave him.

BLOOM: Was disability a factor in why your boys were placed for adoption?

Robyn Sheppard: I believe it was absolutely. I think a lot of birth families that have children with disabilities are already struggling to raise children and when you add in the disability factor and the extra care, you can’t do it. They tugged on our heartstrings and we saw these beautiful kids and didn’t want to walk away. It seemed everyone had been walking away in their lives. It would be nice if other people were interested in adopting kids with disabilities because there are so many of them.

BLOOM: What kind of a kid is Benjamin now?

Robyn Sheppard: He’s a funny guy. His interests have changed and he’s into sports and fashion. He has cerebral palsy and uses a wheelchair for long distances. He needs assistance with all of his healthcare and dressing.

BLOOM: What was the most challenging part of your adoptions?

Robyn Sheppard: Just figuring out how you’re going to raise these kids who have already had such a hard start. They’ve already had so many influences in their lives and all of a sudden we’re new parents and we don’t really know how to parent. It was a big learning curve for sure. When we first got Deion we’d never been parents and all of a sudden we were parenting—things like knowing how to enforce rules without being too strict. I think we were too strict.

Ben had had a harder start to his life so it was difficult for him to adjust. He brought new challenges with a lot of difficult behaviours and we still have challenges with him. We think he also has fetal alcohol syndrome and it’s affected how he can process things. When we adopted him he was still going to school at Bloorview and we live in Whitby and I’d drive him every day. He’d have major, major meltdowns in the car.

The mental health support in this province is non-existent and we can’t find help that is appropriate for Ben. They look at his physical disability and dual diagnosis and say send him here for this aspect, and send him there for that aspect. But we can’t separate him up. He’s 120 pounds now, so if he does get out of control I’m not physically able to handle him. It’s really difficult. He had hip surgery in March and was at Bloorview for four months. That was a long, difficult road for him and he’s still experiencing a lot of pain.

BLOOM: How do you manage when you can’t seem to find the mental-health help for Ben?

Robyn Sheppard: We take it one day at a time, to be honest. Some days it’s really overwhelming.

BLOOM: What kind of changes have you seen in the boys?

Robyn Sheppard: They’ve both developed more confidence. Deion has his own personality and he’s comfortable with that. He feels secure and loved and he knows that he’s good—that’s the biggest change for him. Benjamin’s personality has really come out. He’s always singing and he wears bright gold shoes and loves to talk about baseball and basketball.

Love goes a long way, but you also need other supports.

BLOOM: Are you able to get help?

Robyn Sheppard: Ben goes to Holland Bloorview’s respite program once a month for a weekend and that’s been a great physical and mental break for us. He loves the nurses and rec programs.

A lot of people don’t know that children’s aid provides an adoption subsidy that is not necessarily income-based if they’re placing a child with significant needs who needs extra support in the community. They give you a daily per diem that adds up to be quite significant. It makes a big difference in being able to meet those extra costs. Just the months that Ben was an inpatient at Holland Bloorview were very expensive months for us. It’s made a big difference in what we can provide for our kids.

I wish there was more emotional support. They say there’s post-adoption support, but whenever I’ve reached out to the children’s aid they haven’t had anything for us.

BLOOM: Your adoption is interracial. Have there been issues related to that?

Robyn Sheppard: There have been some. When we first got Deion I had no idea I had to bring him to a special barber. I took him to First Choice and that was a disaster. He was culturally raised in a very white foster family and at this point he’s not interested in his roots but we would love for him to learn about that in the future.

Ben is much more culturally black. He would like us to be really into all of the black basketball players and he wants to dress like them and have his hair done like them. I don’t even do my own hair and I’m not very fashion savvy. So that’s been a bit challenging. We incorporate his culture into our lives as much as we can and encourage connections in the community.

BLOOM: What advice would you give a parent thinking about adopting a child with a disability?

Robyn Sheppard: Take it one day at a time. Just because they have a disability doesn’t make them any less valuable. They have a lot to give.

BLOOM: How has adopting children with disabilities changed you?

Robyn Sheppard: It’s been eye-opening to understand more of what other parents experience every day and how hard it can be to navigate the medical system and the mental health system, not to mention schools and IEP meetings. There are so many more things for you to navigate every day. It’s overwhelming. I wish it was easier to keep it all under one umbrella. But there’s one piece over here and another piece over there.

The biggest change is that I used to be very quiet. I didn’t really seek out people. I was very introverted. You can’t be introverted when you’re raising kids with special needs. It brought out the mama bear in me and made me face things I wouldn’t have before. It brought me out of my shell.

BLOOM: Do you think differently about life now?

Robyn Sheppard: Yes. The things my kids have been through and they’re still smiling every day. It’s humbling. Some people look at adoption and think all the problems go away. They don’t. Their early experiences affect every aspect of their lives.

BLOOM: Had you planned on adopting prior to meeting your boys?

Robyn Sheppard: It was something I’d always wanted to do eventually, but it wasn’t on the radar. But these situations presented themselves.

By Louise Kinross

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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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A play, an alphabet board, a new voice

This Is The Point is a play about two couples: a man and woman who have cerebral palsy, and a man and woman who have a child with cerebral palsy. One of the actors uses a head pointer to communicate with an alphabet board. “The play is about love, sex and disability,” says Dan Watson, a co-writer and actor whose son Bruno, 7, has cerebral palsy. He co-leads Ahuri Theatre, which is producing the play with The Theatre Centre. “The themes we circle around are love, parenthood, communication and acceptance.” BLOOM interviewed Dan to learn more.

BLOOM: Tell us about Ahuri Theatre.

Dan Watson: It was formed by me and a few other people who went to school together in France. We did a lot of physical theatre there. We worked with mask and clown and mime and tragedy. Ahuri works in Japan and Canada. We’ve done a lot of shows that incorporate different languages. When we write, we write on our feet, not sitting at a computer. We get in a space and we do improvisation and the script comes at the end. This Is The Point evolved more out of my personal life. Our older son Bruno is non-verbal and I wanted to do something that looked at language that went beyond words.

BLOOM: I'd love to hear more about Bruno.

Dan Watson: Bruno really likes rough-housing, loud music, wrestling, and going fast. His brother Ralph is four, and the two of them have fun running around with Bruno in his walker and Ralph on his bike. To communicate, he may look at things he wants, or vocalize or gesture with his arms. He uses an eye-gaze system and some low-tech tools like a communication book. We want to find a way for him to consistently advocate for himself—not just by saying ‘no,’ but by actively saying ‘I want to do this.’

BLOOM: In This Is The Point, one of the characters has cerebral palsy and uses a head pointer and alphabet board to communicate. Why did you want to do this play?

Dan Watson: Tony Diamanti is the actor who is non-verbal and uses a chair. We met Tony through another project called What Dream It Was. We invited him to work on that, but he said he wanted to do his own play and he sent us a play. I was struck by his voice, his sense of humour, his passion and his wanting to share his sexual experiences and to make sure that people know that people with disabilities are sexual human beings that live very full lives. I think a lot of people in the general public don’t see someone who looks like Tony that way. I thought this is exactly the kind of opportunity that I want to make happen. If Bruno was older and wanted to do this, this is something I’d hope someone would take on and work with him on.

I didn’t know where it would go, but we started to work on this play. We wanted all four of us to be on stage.

BLOOM: So in addition to you and Tony, there is Liz MacDougall, who is Tony’s partner in real life, and Christina Serra, who is your partner? 

Dan Watson: Yes. At first we tried to make the play the way you usually do. It was very physical, with scenes and blackouts. But it wasn’t working for Tony. We were trying to fit him in to something that wasn’t going along with the way he communicates and lives. So we started to have Tony communicate the stories himself, but then we didn’t fit in. We’ve come to something where we talk in the show and we talk with the audience and we also jump into scenes that are re-enactment scenes. By the nature of who we are, these scenes all have connection to disability.

A lot of the stories we share are, for lack of a better term, trying to normalize in a certain way disability—and sharing our lives, rather than lecturing or trying to teach people. We model the way we work together so we don’t hide the transitions that take a long time. It takes a long time to get set up and there’s nothing wrong with that, whereas we live in a society that is obsessed with speed. We’re asking people to stop and slow down and be with us and to feel that that’s okay. It takes Tony a long time to communicate because we have him talking directly to the audience and the audience has to read along with him.

BLOOM: In a trailer for the play, Christina makes a comment about how we’re not as inclusive as we think we are. Then she says: ‘You don’t know about disability until you’re opened up into that world.’ It seems like your play might be giving people an immersive experience into that world.

Dan Watson: That might just be the thing we want to have happen to an audience. When people encounter disability, it can bring up a lot of different feelings, and some uncomfortable ones. What we want to do is share and open them up to that world and show them that it’s okay that people with disabilities live all different kinds of ways. Just like anyone, they have struggles and happy moments.

BLOOM: I found it very interesting what you said about speed. Our culture glorifies speed. This is something I’ve been aware of because my son has a number of physical disabilities and he can’t move quickly.

Dan Watson: We were initially trying to fit the play into a form that was about speed. We need to move onto the next scene, keep it going, keep the energy up. Then we realized that’s not what this group is bringing, and slowing down is not a bad thing. That’s when things opened up for us. We presented it a couple of times and audience members say they feel at ease and there’s a real casualness to the show. We’re welcoming them and opening them up into our world for a moment.

Of course this is part of a bigger conversation. I don’t have any visions of everyone coming away from the show knowing everything about disability, nor do I want that. We’re just sharing our lives and our perspectives. I do hope they go away and take us with them, and that maybe we pop up into their heads in their daily lives when they need us—perhaps even when they’re encountering people who don’t have disabilities but who are different.

BLOOM: Did you have experience with disability before Bruno was born?

Dan Watson: No. I don’t think I even knew what cerebral palsy was before Bruno was born. His life has opened me up into a whole different community. I have these memories of being in school and kids with disabilities were in chairs on one side of the playground watching us. And I look back and think ‘Oh my god,’ I didn’t even think about them.

BLOOM: Have your thoughts about disability evolved?

Dan Watson: Yes, and with this show too. At first we were focused on the way Tony communicates. When I see people encounter him it’s a bit of a novelty—they’ve never seen something like that before. Then Tony says: ‘Pay attention to what I’m saying, not how I’m saying it.’ Over the course of working on this show in a funny way disability is less of an issue. The differences aren’t so apparent to me anymore. Tony is who he is and it’s only when I see other people encounter him that I go ‘Oh yea, Tony is non-verbal, yet I forgot in a funny way.’

BLOOM: I think having a child who doesn’t speak conventionally is challenging because verbal speech is so prized in our culture.

Dan Watson: It is really hard. There’s constant pressure from outside in terms of how Bruno interacts with people. There’s a scene in the show where I’m on the playground and that’s always a big challenge because Bruno and I go to the park all the time. We go on the accessible swing and I’m always having to negotiate with kids who want to be on the swing. And explain to them who Bruno is and why he can’t go on the other swings. You have to be this advocate and do all this explaining when you just want to hang out on the swing. Then you also wonder—what does Bruno think? I’m sure he knows this is going on.

We were just talking this morning about subtle communication things that you know with your child that other people don’t know. You probably see this with Ben. It’s hard when you can see what’s going on but others can’t seem to see it.

BLOOM: What’s been the greatest challenge of producing this show? Was it altering it from a traditional format?

Dan Watson: Yes. But that’s also the artistic—that’s what artists need to do is push beyond what they know, and that includes disability but also how you make things work. Usually people who don’t have disabilities are cast as characters with disabilities. That’s because it’s easier for the show—and the way the show is done.

But if you take a step back and say no, we’re working with people who are differently abled on stage, there are a lot of opportunities that present themselves. That’s really exciting as an artist. Instead of doing it the same old way you’ve always done it, it can generate amazing, different work that you’ve never seen anywhere else. It’s all about who’s in the room. Sometimes that’s a challenge—it’s taken a long time for us and trying different things. But the challenge is actually part of the reward, as well as what’s really engaging.

This Is The Point runs from Nov. 4 to 20. Book your tickets here. Photo below of Dan Watson, Christina Serra with their children Ralph and Bruno. 

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Why I can't be 'for' the 'SickKids vs' ad

By Louise Kinross

Disability is personal. It’s part of identity. When your child has significant disabilities, it becomes part of your identity too.

Perhaps this is why the Hospital for Sick Children's latest campaign video SickKids vs—which positions the hospital and its patients against cancer, kidney failure and autism, and includes this image of a girl standing defiantly atop a huge pile of discarded wheelchairs—feels like a betrayal. It’s trending now on YouTube with close to 200,000 views.

“We’re on the front line every day. And we are winning,” says the copy on the foundation page. Indeed, in the video, patients join a simulated battle line with armed 'Fort York' soldiers, hop in a boxing ring to fight cancer and smash apart a kidney dialysis machine with a bat.

I get why it’s so appealing. Viewers are encouraged to choose a fight and donate. Who doesn’t want to be a “winner?” From a fundraising perspective, I'm sure this ad has hit the ball out of the park.

But what about the messages it sends to kids and families who aren’t on the winning side?

When you define things in simple terms, you also imply that those who don’t beat their illness or disability are “losers.” Were they not as tough as the kids wearing the super hero costumes in the video? SickKids vs. plays to the song Undeniable by Toronto rapper Richie Sosa. The chorus goes “We undeniable.”

Are the kids who live with permanent disabilities or chronic illnesses, or who die from their condition, not “undeniable” enough? The word “defeat” flashes during the video. Does that mean some kids “surrender?” Do we really want to believe that children have that much control over their medical conditions? And at some point, doesn’t the concept of fighting just miss the point when we're talking about health and healing?

In her 2015 book Malignant Metaphor: Confronting Cancer Myths, science writer Alanna Mitchell writes about why the battle metaphor isn’t helpful to cancer patients and their families (she also writes about why it's not a great analogy for the latest clinical treatments). “A main concern is that when someone dies of cancer, the message that remains is that that person just hasn’t fought hard enough, was not a brave enough soldier against the ultimate foe, did not really want to win,” she writes.

Many children with congenital disabilities or complex medical problems are patients at SickKids. Their conditions and disabilities are not ones that can be defeated. Did they, or their parents, not try hard enough?

And is it really so easy to define “the enemy?”

The inclusion of autism in the video as something to be battled against is surprising given our current understanding. Autistic adults tell us that accepting and valuing their differences is the way to go. To them, eradicating autism isn’t possible without eradicating who they are as people. Most people in the disability field don’t believe autism can be “cured,” any more than sexual orientation can be changed. Even Autism Speaks just removed cure as an objective from its mission. The focus now is on helping people live good lives that they value.

I honour and respect the families who participated in the video. I understand why viewing their kids as warriors is empowering. I certainly think of my son, and our family, as warriors, but as fragile ones.

From a health organization, I expect a more complex, nuanced depiction—one that includes all kids, whether their disease is cured or not. One that shows that there are many rich ways of living, and dying. In the video, all of the triumphant patients stand on two feet. I’d like to see one rocking a wheelchair, because that’s how she’ll get around for the rest of her life. And I’d like to see more images of kids who look different, like my son, due to their genetic conditions or disabilities. These kids are SickKids patients as well. I’d like to see a video that expands our conception of human value, beauty and diversity. 

We are fierce, but we are also afraid. As parents, we often feel inadequate to the enormity of our child's illness or disability. And that's okay. My dad, who served for almost six years in World War II, told me: “You learned to live with fear.” 

We don't need to buck ourselves up with flashing neon lights that say: “Sick isn't weak.” For one, who ever said that patients and families were weak? And for two, what is wrong with weak? Weak just means vulnerable. It's who we humans are. 

As someone whose child has had close to 20 surgeries at SickKids, I would say the humanity, the compassion, of the doctors and nurses, is what's made all the difference in our care. 

I asked Alanna Mitchell what she thought of the ad.

“Yeesh!” she wrote back. “Imagine if they had those patients dancing, instead of fighting.” 

At the end of her book, she asks readers if dance, rather than battle, might be a more apt metaphor for cancer. I think it’s a useful one for any disability or difference. Indeed, for any life. “Not a win or a loss,” she writes, “but a pirouette.”

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A Family Like Mine: Who should we feature next?

A Family Like Mine is a series of videos on diverse families raising children with disabilities. The photos above feature three of our families to date. We aim to identify families composed in different ways and representing a variety of ethnoracial backgrounds and disabilities. Check out our playlist of five videos here. Is there a certain type of family you'd like to hear from in video number 6? 

Please post your ideas below.

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Drug cuts weight gain in autistic kids who take antipsychotics

By Louise Kinross

Weight gain is a dangerous side effect of antipsychotics used to treat severe irritability and aggression in some children with autism.

Now a randomized study published in JAMA Psychiatry finds that taking the diabetes drug metformin while on atypical antipsychotics decreases this weight gain. The study was led by Holland Bloorview researchers in partnership with scientists at Ohio State University, the University of Pittsburgh, Columbia University and Vanderbilt University.

In the four-month study of 60 kids with autism aged six to 17, those who took metformin saw their body mass index measures fall—three by as much as eight to nine per cent—while those in the placebo group continued to put on pounds. The average weight difference after the study was six pounds: While the kids on metformin maintained their weight while growing taller, the children on placebo grew in both weight and height.

“For the kids who need these medications, we’re trying to prevent long-term health complications from obesity like diabetes and stroke,” says neurologist Evdokia Anagnostou, lead investigator in Holland Bloorview’s autism research centre. “Children on these meds put on more than a pound a week and we think the mechanism for that is insulin resistance. As a result, the kids eat more, the appetite goes up and they store more fat.”

Metformin decreases insulin resistance and has been associated with stopping or reversing weight gain in adults who take antipsychotics.

The children in the Holland Bloorview study were already overweight. Future research will look at whether adding metformin when a child first begins taking antipsychotics prevents weight gain altogether.

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Disabled? Own it, says keyboardist Casey Harris

Renegades isn’t your typical music video: It’s about disabled people doing the things they love.

This summer American indie rock band X Ambassadors hit No. 1 on Billboard’s Alternative chart with this song about people who aren’t afraid to stand out. “It’s not a matter of enjoying it more or less,” a blind guy hiking on a mountain tells us. Then we see athletes with amputations working out. “It’s about enjoying it differently.”

Later the band emerges from a vehicle led by keyboardist Casey Harris, wearing his signature shades and using a white cane. Due to a rare genetic condition, Casey was born with vision loss and needed a kidney transplant six years ago. BLOOM writer Megan Jones spoke to Casey about growing up with vision loss, why disabled musicians matter, and how the Internet rules as a disability resource for kids.

BLOOM: Let’s start with talking about your history. How did your disability affect your identity growing up?

Casey Harris: I didn't go to a special school for blind kids or anything, so for most of my life, I was really the only visually impaired person I knew. I was born in Seattle but my family moved to Ithaca, N.Y., before I started school. Ithaca actually had an amazing school system, and all my educators were willing to work to be adaptive. They made me feel as ordinary of a student as possible.

I never really played sports [laughs]. But other than that, there’s nothing I can point out that was different for me about growing up with a disability.

BLOOM: At the time did you ever want to have access to other kids with disabilities?

Casey Harris: I’ve never really thought about that before! During elementary school there was one kid who had cerebral palsy and one kid who had Asperger’s. But I was no more friends with them than I was with other classmates. I think when I was young I didn’t really know any different so I never really had that craving for company of other disabled people.

If I were to relive my younger years with the Internet it would be much easier to find a community outside of the school system. Young people [now] have an incredible resource.

BLOOM: What was your biggest challenge growing up?

Casey Harris: During my middle school and high school years I sometimes struggled to learn the social ropes. I mean…those years are so awkward to begin with. On top of that, so much of communication is based on body language. There’s a lot of stuff that kids pick up by watching each other. Not being able to do that was difficult.

BLOOM: How did you work around that?

Casey Harris: I sort of didn’t [laughs]. I just did my own thing and tried not to worry. As I’ve gotten older I’ve learned, but it’s been a lot of trial and error. I think, again, if  I’d had access to the Internet, things would have been easier. You get this completely anonymous community and you can ask any question you want. It’s pretty amazing.

BLOOM: What about parents who have kids with special needs—any advice for them?

Casey Harris: One of the most important things you can try to do is to teach kids to own their disabilities. They shouldn’t be embarrassed by them—disabilities are just one thing that makes people unique. My parents instilled that thinking in me, and I think its one of the most important things they could have.

BLOOM: How did you get into music?

Casey Harris: Our mom was a cabaret, jazz and folk singer for most of her adult life. And our dad, a big music enthusiast, had also tried to become a songwriter at one point. So we were always a really musical family. We had a piano in the house, and when I was around six or seven I started plunking around on it and learned to play a few Broadway songs—I really liked Phantom of the Opera—by ear. Then, a few years later, I started formal lessons.

I also owe a lot to a music teacher in high school who introduced me to all sorts of rock and jazz music. It opened me up to the idea [that] music could be freer. Around that time, me and my brother Sam joined up to make the band. We’ve been playing together for more than 10 years at this point.

BLOOM: Tell us about your keyboard. Is it adapted?

Casey Harris: Nothing is particularly specially adapted. But the keyboards that I use are Nord brand—they’re known for not requiring any screen interaction. Everything has a button or a knob. A lot of keyboardists, visually impaired or not, tend to like that because you can completely change your sound on the fly without having to bury your nose in a menu.

I’m starting to branch out to computer synthesizers, but I’m running into that screen problem. It’s adaptable on a computer screen—you can use magnifiers and screen readers—but it’s still so much less intuitive and musical than turning knobs on the keyboard.

BLOOM: What’s your experience been as a person with a disability working in the music world?

Casey Harris: Honestly, it’s been really great overall. It sounds terrible to say but—it’s a good PR talking point. Weirdly, my visual impairment becomes a point of human interest. There’s a million and one keyboardists out there, but there aren’t that many visually impaired ones that are playing rock music.

BLOOM: At the risk of them stealing your thunder, would you like to see more musicians with disabilities in the mainstream?

Casey Harris: Absolutely. If kids can see more people with disabilities succeeding, then they’ll have concrete examples of what they, themselves, can do. There are a lot of things you obviously really can’t do when you’re blind. You can’t, for example, be a commercial airline pilot. That’s just not going to happen. But there are many other activities or jobs that you can figure out your own way of participating in. By seeing what other people have done, you can see yourself in their shoes.

BLOOM: Is that why you wrote a song like Renegades, which is about celebrating difference?

Casey Harris: My brother is the one who writes the lyrics so I hesitate to speak for him, but that theme has been present throughout a lot of our music. We were never the kind of band that managed to blend in or be part of a scene. I think that’s a strength—the more different you can be, the more interesting you are. That’s where the lyrics came from.

Renegades was the last song we wrote for the album. It wasn't a throwaway piece by any means, but we really weren’t expecting it to get placed in a Jeep commercial and get on the radio.

BLOOM: Did anyone ever suggest that it was risky to make a music video about disability? What’s the mainstream reaction been like?

Casey Harris: I don't think anyone involved in the music video process said anything other than, “This is a cool, inspiring idea.” I don’t think there was any hesitation.

The mainstream reaction’s been nothing but positive. I’ve met and talked to so many people who have said they’ve been inspired by. I had no idea it was going to be this global. It makes me realize that we now we have a responsibility and platform to use our voice to do some good in the world.

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On World CP Day, recognizing a 'mama bear'

When Roma Bennett's son Joshua was only two weeks old, she had to return to work. That meant working till 3, then going downtown to care for Joshua who was at SickKids Hospital, spending the night, and doing it all over again the next day. Roma was raising Joshua on her own.

Early on, teachers suggested that Joshua, who has cerebral palsy, wouldn't do well at school. "I'm a mama bear," says Roma in this A Family Like Mine interview with Roma and Joshua. "And I thought differently." Mother and son share their advice as Joshua gets ready to leave for college.

Happy World CP Day! If you missed the fabulous speakers at the CP-NET Science and Family Day at Holland Bloorview today, please watch them here online.

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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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