Monday, October 17, 2016

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.”

Thursday, October 13, 2016

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.

Wednesday, October 12, 2016

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.

Friday, October 7, 2016

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.

Wednesday, October 5, 2016

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.

Tuesday, October 4, 2016

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.

Friday, September 30, 2016

I can't catch up

A month ago I decided I couldn’t keep adding things to my to-do list.

I wanted to spend more time with my son learning and modelling how to use his Speak For Yourself app, as well as adding content and purchasing a mini iPad as a dedicated device.

At the same time, I was in the process of hiring a new support worker; trying to get my son an opportunity to work with animals on a farm; organizing personal training and physio to help with his curved spine; implementing new exercises at home (they should be done daily, but that’s fallen apart); arranging to have an oxygen monitor overnight so we could check on his breathing; driving across town to get a new lift put on his shoe; taking his clothes to be altered since he doesn’t fit standard sizes; and buying him a fancy electric razor. In addition, I did a CCAC assessment and redid the cumbersome, mind-twisting SIS assessment for Developmental Services Ontario, to reflect his new diagnosis of scoliosis.

Inhale. Exhale.

Given these demands, I decided we’d drop Kumon for a month. My son usually goes once a week and does math and reading books during the week. This would give us more time for the voice app.

It is now the last day in September, and I can report that we’ve made a teeny tiny bit of progress with Speak for Yourself. I purchased a mini iPad and I then ordered my husband to set it up because I didn’t have the brain power.

I figured out how to back-up my son’s profile, and I added the word “stupid” with an image I pulled off the Internet. He kept signing “stupid” when I tried to get him to wear a pair of adapted Tommy Hilfiger khaki shorts I’d bought online. The word wasn’t in the pre-programmed vocab, so I figured he’d need it. He does use the device to ask his dad to play Lego Dimensions with him. But I need to spend a significant amount of time getting more familiar with the device, programming it and modelling it.

I also need to get some kind of case or holder for the mini iPad.

I’m working on the BLOOM e-letter and our care-tip for October is about teaching life skills. The first step is to “start early.” As I edited the story I felt a twinge of inadequacy. I wished I could turn back time and try all of that again, with a younger son.

I suggested my husband and I have a discussion about life skills, with an emphasis on consistency, and he said, “Well, one thing we are consistent about is our failure as parents.”

Then I read this piece by Sue Robins called So Much Lemonade. Sue and her family moved from Alberta to British Columbia earlier this year so she could take a family engagement job at a children’s rehab centre there. Due to a lack of supports for her son, who is 13, she’s just resigned. A short school day (9 or 9:30 to 2:30) and lack of after-school care made swinging work, home and advocacy for her son impossible. “I fear,” she writes, “the only people that care about these issues is us. And us are tired. Really tired.”

“If Sue can’t do it, who can?” I posted on Facebook. And I thought: Maybe I'm not the only one who feels like I’m running a marathon, and that no matter how hard I try, the finish line keeps moving.

Today Boston author Susan Senator posted on a similar theme. Her book Autism Adulthood came out earlier this year. Since then, her 27-year-old son, who was living on his own with support, returned home when it was discovered he had unexplained broken ribs and bruising.

She writes: “I feel a little sheepish when people ask me to give talks about Autism Adulthood. I feel like Didn’t they get the memo? I failed Autism Adulthood! I already have to rewrite parts of that book, for God’s sake.”

To be honest, while I wish only the best for Susan and her son, there was a tiny part of me that was glad that another parent was acknowledging just how tough supporting our kids in adulthood can be. 

Louise Kinross