The blame game

By Louise Kinross

This morning I woke up with a sense of dread. My chest felt like an aching black bruise.

I'd read this piece in The New York Times Magazine about pregnant women and anti-depressants last night. 

Somewhere between my reading and the hours I'd spent asleep a thought had taken root in my mind: Maybe I caused my son's genetic condition. And now I was gripped with terror.

I had to get up and reread this piece I wrote a few years ago, about how parents tend to fall down a rabbit hole of "why" when their child is born with a disability. And how we're determined to find a storyline, or cause and effect, that starts with something we as parents did wrong, even if it doesn't make sense.

I had to remind myself that my son's genetic condition happened at conception, not because I was on a low dose of Prozac while pregnant (to keep severe, recurrent depression at bay).

Thankfully, over the years I'd had contact with Dan Wells, a University of Houston scientist who'd isolated one of the genes affected in Ben's syndrome, and he'd explained how the random deletion occurred. 

The most likely reason was something called "unequal crossing over." When my husband's chromosome eight exchanged parts with my chromosome eight, to ensure more genetic diversity, a tiny piece was left out. He likened it to a green ribbon and a yellow ribbon binding together to become a 150-inch green and yellow ribbon. But two inches were cut out in the middle and the ends reattached. Chromosome eight has about 150 million genetic letters and my son's is missing about two million. "There are some places in the genome where you could cut out two million letters and it would have an almost unnoticeable effect," he told me.

The cause of my son's genetic condition, Dan said, was random and couldn't be linked to an identifiable cause. And then I read a study showing that the error was more likely to occur in the sperm than the egg, anyway.

"There's nothing you could do to reduce unequal crossing over," Dan said. 

So how is it that 21 years later I could be hit with such a massive sense of guilt? 

We know from the March of Dimes that the cause of up to 70 per cent of birth defects is unknown. It follows that in most cases a woman can't control whether her baby is born with a disability. But this isn't a storyline we're comfortable with as a culture.

This paragraph from Andrew Solomon's New York Time piece resonated: "We have defined pregnancy as a universal Lent in which a thousand talismanic things must be forsaken for the health of the developing child. The conventional wisdom in the United States is that women should not sip half a glass of wine during pregnancy, or do the wrong exercise or take prescription medication of any kind. Some women find these relinquishments reassuring; they support an illusion that the mother's behaviour can guarantee a healthy baby."

And the corollary is that if your child is born with a disability, you did something wrong. 

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First steps for a boy attached to an oxygen tank

By Louise Kinross

A couple of weeks ago I got to meet the most adorable child you see above. His name is Branko, and he's almost four, and his mom Jennifer Philp Zakic had written this exquisite piece for BLOOM about having another child after Branko was born with a rare genetic condition.

Jennifer called me from the lobby at Holland Bloorview to let me know that Branko was in the rehab gym on the second floor taking his first steps in physio. 

So I got to race up and meet Branko and his mom and dad and sister, and watch this precious little boy hold his arms down tight at his sides to stabilize himself, kind of like a penguin, and take small steps back and forth between two tables (see photo below). His task was to pick up coloured plastic bugs from one table and bring them to the other table where he matched them to pictures of the bugs. 

Branko was ecstatic with his progress and it was a beautiful moment to share.

To read more about Branko, check out this long interview with his mom: Branko, 3, has bones growing out of his chest.

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Why I don't believe 'disabled' dolls invoke pity

By Louise Kinross

I was so psyched when I heard that British toy company Makies was creating dolls with disabilities and differences, like a birthmark on the face, in response to the #ToyLikeMe campaign run by parents of kids with disabilities.

So when I saw this New York Post piece by Kirsten Fleming criticizing the move, I was puzzled.

Kirsten writes that she has a "massive birthmark" on the left side of her face. Growing up with a doll that looked like her would have "magnified the very thing I learned not to focus on," she writes. And more than that, she argues that creating dolls with disabilities or "quirks" that set them apart is "code for condescending pity."  

I think Kirsten is wrong.

When our family adopted two children from Haiti 10 years ago, it was painful to take them into a mainstream toy store and find only white dolls. What does it say to a child when they don't see themselves mirrored in the culture around them?

Creating dolls that look like real kids, whether it's different races or abilities or with birthmarks, doesn't generate "pity" for those kids. It allows those kids to see themselves reflected back, and it allows their peers to make kids with differences part of their imaginative play. 

Last year 10-year-old Melissa Shang and her sister Eva got almost 150,000 people to sign a petition asking American Girl to release a doll with a disability storyline. Melissa has a rare form of muscular dystrophy and is the only student in her class who uses a wheelchair. "I hope they learn how it feels to be in a wheelchair and how it feels to be such an outsider in middle school," she told BLOOM in an interview. "Most importantly, I want them to know I'm just like them."

American Girl declined, missing what appeared to be a slam-dunk marketing opportunity.

I think Kirsten Fleming is a lone voice. And there's something mean-spirited about her words, as if she's really never gotten over being singled out for her own birthmark. 

In her piece she recounts the story of a family with a toddler with red birthmarks covering her legs in this way: "They complained that when they went out, her splotchy legs drew persistent stares. How inconvenient for them."

What do you think?

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Could special-needs parenting 'stress' be good?

By Louise Kinross

There’s been so much research recently about how chronic stress puts parents of kids with disabilities at greater risk of physical and mental health problems, including the suggestion that it can cause us to age faster.

That’s always made me feel pessimistic and kind of doomed.

So when I was sitting on a rotary bike at the club yesterday and saw an interview with the author of The Upside of Stress: Why Stress Is Good For You And How to Get Good At It I perked up.

I figured it was some kind of fluffy book, but when I later pulled it up on Kobo, I realized it was written by Stanford University psychologist Kelly McGonigal and has a lot of research behind it.

Her premise is that most people view stress as toxic and harmful to our health and that this belief creates physiological responses that lead to a self-fulfilling prophecy.

On the other hand, there are people who view stress as enhancing: they see it as improving work performance, improving their health and vitality, and something that can be harnessed to promote growth.

I haven’t gotten far into the book, but McGonigal summons research that suggests that how you expect stress to impact you—either positive or negative—plays a role in how your body responds to it.

She references research that shows “that people who believe stress is enhancing are less depressed and more satisfied with their lives than those who believe stress is harmful. They have more energy and fewer health problems. They’re happier and more productive at work. They also have a different relationship to the stress in their lives: They are more likely to view stressful situations as a challenge, not an overwhelming problem. They have greater confidence in their ability to cope with those challenges, and they are better able to find meaning in difficult circumstances.”

And she says she’s not talking about trivial, garden-variety stress like getting stuck in traffic. People who have used her techniques have found them most helpful when dealing with major life losses.

So I’m just throwing this out there, thinking that you too may want to learn more about this research and how it can apply to parents of children with disabilities.

In the meantime, I'm going to take a brisk walk around Spiral Garden.

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Sisters: 'Look at me, I'm disabled too!'

By Jessica Geboers

When I was a child doing physical therapy at Grandview, my younger sister Avery climbed into a nearby hand-bike and began riding around the room calling out, “Look at me, I’m disabled too!” She wasn’t trying to be offensive or insinuating that I, somehow, had it better; she only wanted to fit in and have fun like me.

I often ask my mother what she thinks BLOOM readers may be interested in reading about. In addition to her own personal experience of raising me, she now belongs to a Facebook group where moms of children with cerebral palsy share stories and advice. Mom suggested that I write about siblings, given that parents in the group often express concern about not spending enough time and attention on their able-bodied children because their child with a disability requires more care. They also worry, she said, that they might be putting too much pressure or responsibility on their children without disabilities to pick up the slack.

These concerns seemed reasonable, even for larger families with many children without disabilities. Like any good journalist, I decided to begin with some preliminary Internet research to see what had been written on the subject. What I found focused mainly on siblings of children who had severe disabilities and required constant care.

While this is obviously a reality for many families, it didn’t apply to my family. I am moderately disabled and able to take care of myself for the most part. Growing up, my parents always told my siblings—sister Avery, now 17 and brother Jared, 15—and I and anyone else that was around that I was part of the family but that our family didn’t revolve around my disability and me. This meant that while I may have needed extra care, my parents were also mindful to make time for Avery and Jared as well. So, for all the time they spent playing with the toys and adaptive equipment while I went through physiotherapy, it could be said that they were just killing time until Mom dropped them off at gymnastics or hockey.

In a lot of ways, this was Avery and Jared’s normal. Mom recently reminded me that it wasn’t until my sister began school that she realized that not everyone needed ankle-foot orthoses or had sisters who were disabled. Every morning Avery sat on the bottom stair trying to put my AFOs on the way I did, while telling Mom that she couldn’t go to school without leg braces. Before then she hadn’t known any different. Avery even learned to walk pushing my walker around the front lawn.

Obviously, Jared, who came along two and a half years after Avery, had a wider frame of reference, but he was still rather desensitized to my differences. Once he learned to walk, his favourite game was running away with my canes. He learned very quickly that I couldn’t get around, let alone get them back from him, without at least one of them. (This is when I learned to get around the house with the aid of the furniture and walls; from which point onward Mom cursed me as she scrubbed my fingerprints from the walls.) Once Jared began to talk, he would yell, “You’re nothing but disabled!” whenever he got mad at me. “Thanks Tips” was often my response.

When I was around eight, and we still lived within walking distance of our grandparents’ house, Dad would often walk us over to visit them. I would drive the grey Power Wheels Jeep my parents gave me as a reward for using my quad canes for two months straight. My sister was strapped into the passenger seat with a pillow for support and always fell fast asleep (how she slept through my jerky stop-go-stop-go driving no one could quite understand). Our green wagon, the one with two seats and a door, was attached to the back carrying my canes and whatever else we needed to bring. Dad, with seemingly endless patience, strolled slowly behind us.

Avery grew into what my mom calls a “Mensa baby” because she not only reached all of the expected milestones in a way that I had not, but she did so quite early. My parents couldn’t help but be shocked and impressed. Not long after she crawled, she walked, climbed and ran. One of her favourite activities for a time was dismantling her crib, escaping from her room and climbing into bed with me (although I now find this funny and cute, at the time I had mixed feelings). To try to remedy managing a wheelchair and a double stroller, Mom briefly entertained the idea of putting Avery on a harnessed leash of sorts. This was short lived however, as Avery quickly began behaving like a dog in public, and I encouraged her by laughing shamelessly and patting her on the head. From then on, the kids would take turns riding on my lap.

The juggle and struggle of three kids, one with special needs, never stopped Mom from taking us on trips and activities. Together we have flown countless times between Toronto and Edmonton and Palm Springs to visit family, and been horseback riding in Banff and white water rafting in Jasper. Mom told me that rarely if ever did she worry about how to manage us until we were on our way and she had no choice but to figure it out. 

A great example was rafting: When our 20-something instructor, highly attractive, shirtless and with a nipple piercing, saw me struggling to walk over the rocks to the boat, he picked me up out of nowhere and carried me to the boat to sit with him. I was 15 and mortified that my mother might tease me, as she looked like she could barely contain her laughter. Although it wasn’t always easy, I really appreciate my mother’s determination to do these sorts of things with us. Not only has it given us all wonderful family memories, but it has also taught me not to be held back by a potential struggle because it could be worth it for the life experience.

As the oldest I’ve spent a lot of time babysitting and caring for my siblings while my parents worked. This included playing house with my sister while she used my canes to pretend she was disabled too; watching movies while pretending our living room was a movie theatre; trips to the park, me with my walker and them on Jared’s Power Wheels dirt bike; and making grilled cheese, Kraft Dinner, chicken nuggets or tea and toast—the only foods they’d eat for years.

When my brother and sister began school, I assisted with kindergarten and primary school homework. When they bathed I would answer the call to rinse soap from their eyes and check their hair was free of shampoo. To accomplish a lot of these things I taught them how to “help me help them” by carrying things, opening doors or climbing up on the counter to reach dishes I was too short to reach (thanks to my short stature of 4 foot 9). I may not have always appreciated this time with my siblings, but in hindsight, I love this time with them! They were so funny and cute, and it made me feel good to play a helpful role in my family. I’ve also realized, as I’ve gotten older, that it’s helped me to prepare for the possibility of having my own children.

However, this isn’t to suggest that there was never any jealousy. We battled from time to time for the upper hand, as many siblings do. But, likely due to the age gap between the kids and I, most of the jealousy came from me rather than them. I’ve always admired the apparent ease with which they did things, and I never wanted to see them waste their potential—especially when it came to their education. The struggle to accept my physical disability is definitely real—and at times, ongoing—but I’ve always been particularly annoyed with the limitations of my learning disability. Although I’ve often enjoyed school and achieved good grades, I’ve always had to work hard to achieve them. (I think one of the reasons school has always been so important to me is that, unlike my CP, I have a bit more control over it and can more easily combat it with time and effort).

Avery, on the other hand, is quite naturally academically inclined. I’ve always felt that if one can do well easily, one should. So I’ve always encouraged the kids about the importance of school. In reaction to Avery’s apparent ease, both my parents and I have always praised her while unintentionally developing an expectation of her success. And although it is difficult for me to know the full extent, we have learned in recent years that this expectation resulted in Avery putting a lot of pressure on herself. She feared disappointing us if she did not keep it up. We now make an effort to praise her accomplishments without any implied pressure. Jared has always been far less bothered by such things, and is quite easy going in general.

When Avery, Jared and I would argue while growing up, Mom would often remind us to be kind as we may need each other one day. This always bothered me because I took it personally to mean that I may not be able to remain independent as I aged. More recently, I realized that Mom only wants us to be able to depend on each other as family. It has also been an interesting realization for me, now that the kids are older, that I can depend on them to help me. 

For instance, when we were at the West Edmonton Mall’s indoor waterpark a couple of years, Avery and Jared worked together to assist me: in inner tubes, we all linked together, with me in the middle, to keep me from floating too far from them in the waves. Later, Avery held me up as we walked out of the pool towards my canes. Mom was so happy with this that, we later discovered, she took a photo and sent it to Dad. More recently, when I injured my back in a fall, Avery came to Toronto to look out for me. Jared, while he is less likely to volunteer, will help me if I ask him to carry or reach something. I see the effect of growing up with me more so in the way Jared responds to and is tolerant of others who are different. While the other boys made fun of another boy in his class with CP, Jared did not, and was mindful to help him when needed (even though, Jared told me, he did find the boy a bit annoying, but not because of his disability).

During my research in preparation for this piece, I asked Avery if she had ever been jealous of me or worried about caring for me when we were older. She told me she’d never been jealous, except when I went to Easter Seals’ Merrywood Camp: “That made me a bit jealous,” she said, “because it looked like fun.” As for caring for me, she’d never given it much thought because I was older and she’d always seen me take care of myself. “I’ve just thought that maybe we should live in the same city,” she said, which we soon will. 

Avery recently rented an apartment in Toronto with a friend in my building and will be studying at the Ontario College of Art and Design in the fall. Not that I think Avery moved here for me. It just so happens that we both love Toronto. But it will be nice to have her close by. As much as I hate to admit such things, maybe Mom was right: we may need each other one day.

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How to rock Miami Beach in a power wheelchair

By Louise Kinross

In February, Maria Tassou did something she’d never done before.

She flew to Miami Beach with a friend to hang out at the ocean.

Maria, who is a Toronto real-estate lease administrator, had never travelled without her family.

That’s because Maria has Arthrogryposis, a condition that causes stiff joints and weak muscles. She can’t propel herself over distances in a manual wheelchair or carry luggage. The places she’d travelled to in Europe with her family hadn’t been accessible enough to bring her power chair, so she relied on her parents to help her navigate in her manual chair.

This year, Maria planned a trip to Miami with her friend Michelle, who also uses a power wheelchair, knowing she could count on better accessibility. Michelle also had lots experience travelling on her own in the United States.

BLOOM asked Maria how she planned for the trip and what she’d recommend to parents travelling with children with disabilities.

BLOOM: What were some of the barriers you’d faced travelling?

Maria Tassou: I can’t push anywhere long distance in my manual chair and lifting bags was challenging. I had a suitcase with two wheels but it was difficult for me to manage it with my power chair. So I wouldn’t have been able to leave my condo alone and get to the airport with my suitcase. Now you can get luggage with wheels galore, and that’s really helped. I bought a suitcase with four wheels that spin and it’s easy for me to manage it from my power chair.

BLOOM: Did you have any problems with flying?

Maria Tassou: Because my knees don’t bend nearly as much as someone else’s, I have to have extra leg room and the ability to sit forward in the plane so that I can change my posture during the flight. Even though I’d fill out forms asking for bulkhead or window seating, I often didn’t get it. In one case, when I was on a charter flight with my family, the seating was so cramped that I couldn’t move for nine hours. By the end of the flight I could hardly handle the physical pain I was in. My Dad tried to help me but he couldn’t get me out of my seat. Two grounds people had to come and someone took my legs and someone took my arms and they lifted me up and over the seat. That made me nervous about flying on my own.

BLOOM: How did you solve the seating issue on this trip?

Maria Tassou: My friend had experience flying on a number of airlines and had had the best experience with Air Canada. She said ‘It's worth paying a little more if need be to fly with them because they know how to treat you and your chair right.’ Since I was travelling with someone who wasn’t able-bodied, I wanted to make sure everything went as smoothly as possible. I contacted Air Canada about getting elite seats, where there’s a little bit more room. Typically people pay a small fee for these seats, but I’d read that sometimes they’ll provide them to people with disabilities. Air Canada gave us those seats and we didn’t have to pay for them. They were great and made a big difference for me.

BLOOM: Did you have any issues with checking your power chair?

Maria Tassou: One thing we liked about Air Canada was their policy that you can keep your power chair while you’re in the airport right up until you get to the door of the plane. On some airlines they take your chair an hour or two before the flight and give you an old-style manual chair to sit in which is hard to push. With Air Canada, the grounds people who are going to put the wheelchair in cargo meet you at the door to the plane and ask what the vulnerable areas of the chair are. People with disabilities are boarded first and they bring the flight chair to you so you can transfer in privacy.

BLOOM: How did you make sure that the Miami area you were staying in was going to meet your needs?

Maria Tassou: You can find out a lot online, and then you have to phone to be sure. I did a Google search for ‘wheelchair accessible Miami.’ For example, there’s a website called Oyster.com where they often put ‘best accessible places to stay’ for a given city. also I found out that every bus in Miami is accessible and there were a fair number of wheelchair cabs.

BLOOM: What about your hotel?

Maria Tassou: Most hotel websites have filters so you can ask for a ‘wheelchair accessible’ room. But you have to phone to clarify exactly what they mean by ‘wheelchair accessible’ and what you want. We wanted a roll-in shower, not a bathtub, and luckily the hotel was very clear on its website, and with their images, that they had a roll-in shower.

BLOOM: Were there any other issues with your hotel room?

Maria Tassou: I had called to confirm we were getting a fully accessible room that included the balcony. We felt if we’re going to do this, we’re going to do it right, and we wanted to sit on the balcony and enjoy the ocean. When we got there, we realized there was a step onto the balcony. I told them ‘We paid a lot of money to come here on the understanding that the balcony was accessible and, to their credit, they dug high and low and found some very sturdy ramps for us.

BLOOM: What was it like navigating the beach outside your hotel?

Maria Tassou: There was a great pathway behind our hotel that went for a long, long stretch before you had to get back to the sidewalk of the street. I had googled ‘Miami Beach accessibility’ and found a Miami Beach government site showed where you could find mesh mats. These are mesh pathways with runners on the beach so that you can travel on the sand with your chair and not get stuck. On the same website, when I scrolled down, I was surprised to find that they also had motorized beach wheelchairs that they loan for free to people with disabilities.

BLOOM: What kind of chair is that?

Maria Tassou: It’s a basic power chair with really big flat wheels that can travel on sand—like a little dune buggy. It’s amazing because the mesh mat only goes so far on the beach. The ocean rescue staff told us: ‘We only loan them to people with disabilities so that they can experience the same things everyone else does walking along the water line.’ The beach chairs were a fun adventure that we don’t get to experience here in Toronto.

BLOOM: What was it like to be away with a friend rather than your family?

Maria Tassou: It was freedom. I’m an independent person and when I’m at home I do everything myself, so it’s weird to have to rely on people when I travel with my manual chair. Being somewhere else and really enjoying it with my friend gave me confidence that I can travel with anyone.

BLOOM: What advice would you give parents who want to travel with their kids with disabilities?

Maria Tassou: The key thing is to plan. I found reading online, phoning and asking as many questions as you can ahead of time helped make our trip smooth. If you're told something is ‘accessible,’ ask what that really means. Don't take it for granted that their definition is what you need.

BLOOM: Any other recommendations?

Maria Tassou: When it comes to access and accommodations 'you get what you pay for.' By no means would I say overspend, but where a price differences isn't significant and is something within budget, experience has shown me that in terms of accessibility, treatment and so on, you'll be glad you spent that little bit extra.

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How a disability ramp made one little girl's day

By Louise Kinross

Yesterday on the Danforth I saw a toddler with mini ponytails sprouting out of her head. She looked like she'd just learned to walk. She stopped in front of one of the StopGap ramps that dot the Toronto street, allowing those in wheelchairs or strollers to get up over the single-step storefronts (See our story on Luke Anderson, the man behind the StopGamp ramps).

She toddled up the apple-red ramp, got to the top, produced an enormous smile, then toddled down. Then she did it again. And again. And again. Her mother was several feet up the street, unlocking a bicycle. Every time the girl got to the top of the ramp, her tiny figure disappeared out of her mother's sight line. Just for a moment. Then reappeared.

For the next 10 minutes, this little miss continued to take small steps up the ramp, turn around, smile at her physical mastery, then come back down. People on the street began to stop to watch her.

While she probably wouldn't have tried the single step up to the door independently, the red ramp with the most gradual of inclines gave her confidence. It was the perfect example of universal design.

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What does a 'blind' photographer see?

By Louise Kinross

When Mark Nicol was a kid he picked up his dad’s camera a couple of times but was frustrated because he couldn’t see through the viewfinder.

That’s because he was born with vision loss: he sees one-tenth the resolution of what someone with regular vision sees.

So it may be surprising to learn that today Mark’s passion is photography. And his images are part of an exhibit called The Mind’s Eye at the Canadian National Institute for the Blind (CNIB) in Toronto.

“The beautiful thing about photography is it’s a creative outlet,” Mark says. “No one is saying I have to take the same pictures or do the same style as someone else. Being creative means finding your own way.”

The CNIB exhibit includes pictures from photographers who are blind or partially sighted from across Canada. “There are many misconceptions about vision loss, but none as pervasive as a life of complete darkness,” says Len Baker, executive director and regional vice-president Ontario. “We wanted to challenge this stigma.”

Mark says he got his first camera in his 30s, when digital cameras came out and he realized he could see through the LCD screen. “I thought I’d get it to take goofy snapshots of friends but I started using it creatively right away and was hooked.”

One of the ways Mark makes photography work for him is to have an eyeglass prescription built into his viewfinder so he can take his glasses off and put the camera right up to his eye. “I’m still only seeing one-tenth of what someone with good vision sees, but as far as I’m concerned, things are as clear as they can get.”

Another way he adapts is to use auto-focus. “In the old days before our current round of digital cameras, a lot of photographers were focusing manually by turning a ring on a lens. I can’t see well enough to do that. Mastering my auto-focus system, and knowing when I can count on it and when I can’t, has been crucial.”

Mark, who lives in Victoria, B.C., says he’s a generalist who loves shooting everything from landscapes and architecture to pets and portraits. “I also adore doing travel photography and I have a little studio in my garage where I do some product work.” The photo above of St. Peter's Basilica in Rome is his (please click on it to see it in its entirety).

Mark says he’s not sure that the images he produces are different because of his vision loss, but his method of taking them is.

“I’ll walk the scene a lot before I take a picture and explore my subjects differently than someone who has better vision.”

Mark says people assume that vision loss is the same for everyone, but in fact is very individual. “There are people in this exhibit with a range of vision and with completely different types of vision from what I have.”

He notes that there are photographers in New York City who work without any sight. “They’re in a photography studio and they sit a person down in a completely dark room and they set the camera on a tripod. They open the shutter and they walk over with various flash lights and they actually paint light on the person, feeling the person’s face and getting a sense of where the person’s limbs are. At the end of the session they have a picture of a person painted with light. It’s a completely different approach.”

He encourages parents of kids with vision loss to let their kids try photography. “As a visually impaired person figuring out photography, you realize a lot of it is simple problem-solving: ‘Mom, I can’t see if my picture is in focus.’ So you have to do some problem-solving. I’m amazed at the incredible images people take who have much lower vision than me, or no vision. Either you solve the problem or you come about it backwards and maybe you don’t solve it, but you take it in a different direction with a photo where that problem isn’t an issue anymore.”

The Mind’s Eye exhibit is on at the CNIB at 1929 Bayview Avenue in Toronto. Friday May 22 from 9 a.m. to 4:30 p.m. is the last day. 

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Could surgeons benefit from a coach like athletes do?

By Louise Kinross

I just read a fascinating review of the new book Do No Harm, a memoir by one of Britain's top neurosurgeons Dr. Henry Marsh. 

New York Times reviewer Michiko Kakutani describes it as "an extraordinarily intimate, compassionate and sometimes frightening understanding of his vocation."

This quote from the book stands out: "It's one of the painful truths about neurosurgery that you only get good at doing the really difficult cases if you get lots of practice, but that means making lots of mistakes at first and leaving a trail of injured patients behind you."

This reminded me of a National Post story last month in which a Toronto surgeon advocates for ongoing coaching of surgeons using video replays of operations.

"We graduate, and then we start practising," said Dr. Teodor Grantcharov of St. Michael's Hospital. "And nobody watches anymore. Nobody sees what you do and how well you do it. We're waiting on adverse outcomes."

The Post story references a study by Grantcharov in the journal Annals of Surgery that compares coaching residents using video to conventional training in the class and in the operating room with senior surgeons.

According to the study, general surgical residents at the University of Toronto who met with an experienced coach who used a video of a trainee performing an operation to identify errors, then showed an expert clip and gave advice, performed at a higher skill level and made barely half as many technical mistakes as those taught conventionally.

It works for training athletes and pilots. Doesn't it seem like a no-brainer that it would work for surgeons, including neurosurgeons?

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How to keep climbing with a medically complex child

By Jade Biesinger

My name is Jade and I live in England at the other side of the “pond” with my husband and four lovely children. Heni, one of our daughters, has Trisomy 18.

Heni can’t walk, talk or do everyday tasks and is classified as having profound and multiple learning disorders. She wasn’t expected to live beyond birth but here we are—almost 20 years later—still heading in to uncharted territory.

I've often described our experience raising her as feeling like we are climbing up a mountain. We started out with lots of energy and supplies, only to find that they have been used up along the way—having covered many different terrains. As time has progressed the ascent seems to have steepened and we've got progressively more tired and feel in need of more rest stops.

During this time I feel I've given up lots of “me”—looking after Heni and subjugating my own needs to the bottom of the pile. I’ve encountered “ill” health, “un” sanity (I won’t say insanity because that’s something different) and at times have been bereft of creativity or balance in my life. Perhaps you could describe it as survival mode?

I was stuck. Stuck in the house, stuck in the role of carer, stuck in the mindset of “will life ever be any different?” I was living what sometimes seemed like a monochrome life—one I had never expected to be living for so long, but all the time keeping my head down and continuing to climb.

As I’ve journeyed on experiencing the valleys and peaks, I’ve not only been searching for ways to help my daughter and family and add colour to life’s struggles, I’ve also been looking to improve my own health and wellbeing.

When Heni was younger she used to have the energy to do full days at school but progressively over time I’ve seen her energy wane and her capacity reduce (strangely on par with my own?).

Nowadays she only has the energy to go to college for three-and-a-half hours in the mornings and then comes home to rest, sleeping for about one-and-a-half hours.

My time to accomplish anything has therefore dwindled from a whole day to a few hours.

Making time count is important to me, and I put my health as a high priority. Some of the things I do during that time frame are to go for a walk or run or do some form of exercise (according to how and what I feel I am capable of). I try not to overextend or overdo anything, but to be consistent in my actions. An important learning point for me was:

I can only give out so much before I become depleted. So I have to consistently fill myself before I can give to others.

I liken it to a watering can with a bunch of holes. It’s never going to be full up because it’s continually leaking out. You have to patch the holes up and replenish it before it can give water out of the spout and shower the flowers! I can’t always control every type of energy expenditure (like when my husband works away a lot or when Heni takes a dive for the worse) but I can control the other holes that leak energy.

For me, those include food intolerances, not eating right, sleep problems, negative thinking and too much or the wrong type of exercise.

It wasn’t until about eight years ago that I suddenly realized that I was “toast” and needed to have a break—on my own! My husband virtually forced me to go. I cried all the way to the airport and most of the journey to my destination, by which time I wondered how on earth I had got in to this state.

I had always been an independent person who would do anything and loved exploring and adventure. But I’d become a shadow of my former self. I needed some ME time. Which is the second thing I had to learn:

I’m always too hard on myself and feel guilty for everything and anything. Therefore it’s important to learn to quit the guilt.

How could I leave my daughter? I asked myself. How could my other children cope? What if anything happened to my daughter while I was away and the worst happened: she died? Would I ever forgive myself for leaving?

The week I had away was a wonderful pause in space and time. It made me realize that I needed to be strong, I needed to recharge so I could go back and have something to give back out again. I needed to stop the guilt and realize I wasn’t super human and could only cope with so much. I needed to look after myself too.

It sounds kind of selfish when you read it in the cold light of day—but what is the alternative?

There is a quote that says: “To lift someone else you have to be on higher ground.” How does losing your physical or mental health put you on higher ground?

I returned back from the holiday in a better space, but guess what?

It wasn’t long before that watering can was emptying again…and quicker! For a number of years I did a solo holiday or went away with a girlfriend. I always had fun, enjoyed the change in scenery and always came back feeling recharged and ready to go again. But, it’s surprising how soon you forget, so my lesson 3 was:

Remember the things you’ve already learned! Get up, dust off, try again.

I would forget to take a break and replenish my energies and land back in the same place as I’d previously been!

Even now I’m still resistant to the fact that I need help and I need rest from time to time. I still feel guilty and find it hard to just do nothing!

So what is the consequence of consistently neglecting yourself and not listening to your needs? Probably one of the most frequent occurrences resulting from “dis” ease today is that of chronic stress, which is the precursor to most illness out there.

Which leads me on to lesson four:

I’m in charge of my own health.

Now that doesn’t mean I don’t go to see any one to advise on health matters…on the contrary. I think it’s important to get the best advice possible and that often involves a number of different opinions.

For me that involved getting a series of lab tests done to show me what was happening in my body. I learned I was quite severely depleted in practically everything! All of a sudden I understood why I felt so rubbish! What I had failed to realize was that the constant stress I had been under was using up all my nutrients and leading me to a point where it was a struggle to do anything.

On to lesson five?

By small and simple habits are great things brought to pass!

Everyday consistency of small actions for me means taking supplements, small changes in eating or exercise habits and getting to bed a few minutes earlier. It takes time to get in to a hole and it takes time to get back out again. Often the temptation is to do something a few times and say “well that didn’t work” and move on to something else, without really giving it a chance. Sometimes it takes years for health to return fully. So, I am expectantly hopeful. Which leads me to lesson number six, my most recent:

Be patient, hold on to hope and enjoy the journey.

I read an article recently that described a demonstration. A person held two soda cans, one empty and one full. The empty can was squeezed and began to bend and then collapse under the pressure. The full can withstood far greater pressure and held firm. The demonstration was likened to us needing to be filled with spiritual strength (whatever that looks like for you as an individual). When spiritually fed and “full” we are able to withstand far greater outside pressures and forces. It doesn’t matter how many respite breaks I take or vitamin supplements I pop if I don’t have this type of strength. Without it I would have been crushed a long time ago.

There’s a scripture on a quilt that hangs above my bed, which reads: “I’ll wait on the Lord, be of good courage and he shall strengthen my heart.” I love reading those words and realizing that there is someone who understands the big picture, someone who I can “hope in and hope on,” someone who is teaching me, step by step, to be a better person and who is beside me (and you) every step of the way.

I gain strength in the knowledge that I’m not on this journey alone and that there’s someone higher and far greater than little old me who doesn’t have all the answers.

There are also people like you who are trekking up your own personal mountains, on similar journeys, but experiencing different valleys and peaks. We have to remember that as we climb we are doing so without a map. We don’t know where the peaks and valleys are and sometimes we can’t even see the top of the mountain. My wish is for us all to keep “on the way” and learn to love the terrain. And I hope that when we look back on the view we will see that our journeys were varied, rugged but stunningly beautiful.

Being a carer to my daughter has been one of the most difficult journeys I have ever had to take. It’s still a learning process and there are still peaks to tackle, but little by little I am learning to stop, enjoy the vistas and savour the time I have left with her. My plans for the future, and advice to you? Keep going!

You can follow Jade on her blog Henibean. She describes it as “learning how to live amidst challenges and maintain health, sanity, creativity and balance.” She uses her experiences as mum to Heni and her background as a physical therapist and naturopathic iridologist. “Please drop by and join me.”

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BLOOM media roundup

Here are some recent stories related to disability, parenting and health. If we missed a good one, please post in the comments. Thanks!

A life in motion, stopped cold The New York Times

Video about a Brazilian who learns she's qualified for aerial skiing in the next Winter Olympics from an ICU bed after breaking her neck in a skiing accident.

Social media campaign aims to increase profile of Canadian research The Globe and Mail

Research2Reality is a $400,000 social-media campaign shining a spotlight on the work of academic researchers at six universities across Canada, including the University of Toronto. Follow their video series.

Sex, lives and disabilities Science 2.0

"Disabled people's sexuality has been suppressed, exploited and, at times, destroyed over many centuries. It has been seen as suspect, set apart and different from the sexuality of non-disabled people." This piece looks at the move toward sexual rights for people with disabilities.

'On the Move' by Oliver Sacks The New York Times Sunday Book Review

Author Andrew Solomon writes: "The emergent field of narrative medicine, in which a patient’s life story is elicited in order that his immediate health crisis may be addressed, in many ways reflects Sacks’ belief that a patient may know more about his condition than those treating him do, and that doctors’ ability to listen can therefore outrank technical erudition."

Holograms of disabled people appear if you try to park in their space Digital synopsis

Projections of a real disabled person pop up every time a non-disabled driver tries to park in a disabled spot in this Russian mall. 

The life of Barbara Turnbull, in her own words The Toronto Star

An ebook written by Barbara Turnbull, who died on Sunday, described her physical and psychological battles and the lessons she learned after the shooting that left her a quadriplegic 30 years ago.

Patient care for children with intellectual disabilities can be improved Global News

Research at IWK Health Centre looks at how stigma in hospital affects care of ‪kids with intellectual disability.

Pilot project to give cash to Ontario patients for self-directed home care The Globe and Mail

Patients or caregivers will receive money to purchase services they choose after a scathing report on Ontario's home care.

The case for more black doctors The New York Times

"For now we have to attack the problem of racial health disparities from as many angles as possible. Black doctors are an important part of this mission."

Film review: Where Hope Grows Variety

A drama about a fallen-from-grace baseball player who needs a shot at redemption, and a young grocery clerk who could use a best buddy while dealing with Down syndrome.

Halifax hospitals replacing flower beds with vegetables CBC

Vegetables will replace flowers, shrubs and even the lawn outside 10 different hospitals. The facilities will work with food banks, community groups and restaurants to find hungry people for their home-grown food (what about the patients?).

And finally, on Sunday May 17, hop over to The New York Times' Motherlode blog to read this piece running that day:  "Come read a different kind of tech story, about a mother who thought a 3D printed prosthetic arm would be perfect for her 8-year-old, and a son who thinks his arm is perfect just the way it is."

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A reading from author Julie Keon

Here's author Julie Keon reading from her new book What I Would Tell You: One Mother's Adventure with Medical Fragility about raising her daughter Meredith, who was born with severe brain injury. The book, targeted to parents and professionals, can be purchased on Julie's website.

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What Barbara Turnbull said about rehab and grief

By Louise Kinross

In 1983 Barbara Turnbull was shot during a robbery at a convenience store where she was working a night-shift as a Grade 13 student. Last Sunday, The Toronto Star, where she worked as a reporter, wrote that she had died at age 50 as a result of complications from pneumonia.

Barbara gave a fabulous talk at Holland Bloorview in 2002 about her 18 months in rehab and how she learned to navigate the world with quadriplegia and a lot of technology. I wrote about it in our staff newsletter at the time.

What jumps out at me as relevant today was a comment she made about professionals not allowing her to express her grief. "At one time, when I was going through the worst depression, a nurse said 'If you're not careful, people aren't going to want to be around you,'" she recalled. "It had such a devastating impact on me, because I felt I had to be upbeat for people or else I'd end up alone."

Holland Bloorview scientist Barbara Gibson spoke to BLOOM recently about how therapeutic environments may send the message that negative emotions are to be repressed. "Sometimes patients are made to feel that they can only express positive emotions with professionals," she said. "You know, 'we're all cheerleaders here.'"

I thought that was an important message to keep in mind.
What Barbara Turnbull told us she found most helpful during her rehab was talking to people with acquired disability who were further along in the journey and could encourage her and offer practical advice.

Photo by Toronto Star photographer Lucas Oleniuk

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Finnish punk band rocks disability awareness at Eurovision

PKN is a punk band that's a little different. The four men are middle-aged, Finnish, and have Down syndrome and autism. Next Tuesday they're competing in Vienna in the Eurovision Song Contest.

The group was chosen to represent Finland by popular vote.

PKN has toured in the United States, United Kingdom, Germany, Norway, Canada and the Netherlands.

They were the focus of a documentary called Punk Syndrome in 2012. Their first hit, sung in Finnish, includes the lyrics: "I don't want to live in a group home, I don't want to live in an institution."

I think this is very cool. Did anyone see them on tour?

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To our nurses: You are the heart of rehab

By Louise Kinross

When your child is an inpatient at Holland Bloorview, the staff you will come to rely on most are the nurses on your unit.

When your child moans in pain after his body cast is removed, because his muscles are in spasm, it will be a nurse who sits with both of you, remaining remarkably calm as you hyperventilate, and problem-solving to figure out a solution.

Our nurses are highly skilled in caring for children with complicated disabilities and medical problems—and their parents and families, who are often traumatized. They are ingenious in coming up with ways to distract kids from painful procedures or in making something unpleasant, like having a dressing changed or blood drawn or taking a medication, bearable.

Our nurses provide the best medical and emotional care to our children and families.

Of any staff member, it is our nurses who will be with your family the most during your inpatient stay.

Our nurses are our children’s greatest champions as they progress through the rehab process, and their constant allies when times are tough.

When my son was hospitalized here, we came to depend upon their handmade heating packs for pain: wrap three damp facecloths in a blue pad, secure with orange hospital tape and heat for a minute in the microwave. They were soft, moulded to the body and carried a bit of nursing magic.

When everyone goes home for the weekend and the hospital becomes a ghost town, and you feel incredibly lonely and alone, it will be the warmth and encouragement and presence of the nurses that lift your spirits.

Our nurses instill confidence in parents' ability to learn how to care practically for their child after surgery or trauma. They make what feels impossible possible.

Please join me in saluting all of our nurses at Holland Bloorview during National Nursing Week.

And please share a story about how a nurse made a difference in your life.

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Dear doctor, therapist, nurse and teacher

By Louise Kinross

I was delighted and honoured to interview Julie Keon, author of What I Would Tell You, on Saturday at Holland Bloorview.

Julie’s book is about raising her daughter Meredith, now 11, who was born with severe brain damage. What’s unique about this memoir is that it’s structured around deep practical truths Julie has learned that will improve understanding between parents of kids with disabilities and the health professionals who work with them. 

A must-read chapter in the book is directed to clinicians—doctors, and also therapists, nurses, social workers and teachers. It includes 10 suggestions. I am including the first four below (the following belongs to Julie Keon and is copyright 2015). Please read these and share with the clinicians you work with.

1. I do not think you are God. There is far too much pressure placed on doctors. They cannot, and should not, have all the answers. Nor can they prevent catastrophic outcomes. As much as you deserve tremendous respect (as all of us do), you might be relieved to know that I do not hold you up on a pedestal or expect you to perform miracles. You are human, and I do not expect you to predict the future or a life expectancy. Nor do I expect you to know exactly what is going on with my complex child. I appreciate it when, with all of your years of experience and knowledge, you can look at me and tell me that you do not know the answer. I do not need either shaky hope or dark predictions. What I do need is the truth as you know it, regardless of whether or not you believe I am able to handle it.

2. Be aware of how long I have been on this path. If we are meeting for the first time because my baby was born just days or weeks earlier, please keep in mind that I am exceptionally fragile right now. I am not only learning that my child will have lifelong issues, but I am also in the middle of the postpartum period. Please be mindful of my tender emotional and physical state. If we are meeting years into this journey, do not assume that I have become accustomed to the fact that there is a DNR (do not resuscitate) form in the desk drawer in our living room, in the glove compartment of our van and in our daughter’s lengthy hospital chart. Please know that updating this form never gets easier. Speaking nonchalantly about our child’s life expectancy is insensitive, whether you intend it to be or not. It will always be a delicate topic for us. Knowing that we will likely outlive our daughter will never, ever be acceptable to us.

3. Meet me where I am. Please do not expect me to be where you are mentally or emotionally, for I am not there yet. I have not lived the sorrows and losses you have witnessed. I have not experienced even a fragment of what you anticipate for our future. I have only lived this life for a decade, and anything beyond this moment has yet to be lived. Use caution when sharing with us the medical outcomes of other families “like ours.”

4. Unless absolutely necessary, please refrain from asking me about my pregnancy and birth. Especially in the early days, months and years, having to explain how and where our daughter was born each time we enter an emergency room, hospital or medical clinic becomes redundant and is unnecessary, especially when our visit is to rule out an ear infection. It is emotionally invasive to make us relieve this intimate and personal experience with virtual strangers, simply in order to fulfill clinical checklists. Interestingly, by the time we have integrated this experience into that part of our brains that deals with difficult experiences, you will no longer have a need to ask.

Do these suggestions resonate with you as parents? Please add your own in the comments. Julie's book is available to be borrowed through Holland Bloorview's library.

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Wesley goes for a spin

Wesley has been an inpatient at Holland Bloorview twice, following treatment for a rare form of cancer. Read about why seeing Wesley ride off on this specially-fitted tricycle meant so much to his mom Laura Ritchie.

And in case you missed it, check out The Toronto Star's special section on families at SickKids which came out this week.

Author Julie Keon is launching her new book What I Would Tell You: One Mother's Adventure with Medical Fragility this Saturday May 9 at Holland Bloorview at 1 p.m. There's a lovely video about Julie and why she wrote her book in this Ottawa Citizen video. Hope to see you there!

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Grief? A friend? Don't miss this interview

I am delighted to be interviewing Julie Keon (right) about her book What I Would Tell You this Saturday May 9 at Holland Bloorview. You can still RSVP to the event here.

Julie’s book is about raising her daughter Meredith (above with dad Tim), who was born with severe brain damage. I’ve read many memoirs about parenting a child with disabilities, but this is the first one that’s packed with deep, practical truths. When you read What I Would Tell You, get ready to feel like Julie can see into your heart and understands when your courage for what some people call “extreme parenting” has run dry. 

As I flipped through the book, so many chapter titles resonated with me. Then I hit “Befriending Grief.” What? I’ve always resisted grief, pushed it down. The  thought of making it a friend that I welcome in for a cup of tea, as Julie suggests, was hard to imagine. Then I read the chapter and when I next felt grief I did what Julie said. And I realized that it did, indeed, change the dynamic, turning it into an act of great self-compassion. 

This is an excerpt from that chapter. Read the words carefully, and then when you feel the pain of grief, stay with it, as a friend would, follow these steps, and tell us what happens!

“Grief can be our silent companion, something to be tended and nurtured. Think of grief as a person knocking on your door who really wants to see you. They knock incessantly...When the knocking starts, instead of hiding, you can take a deep breath and welcome this person into your home. You set a few reasonable boundaries as to how much time you have to give and then you put the kettle on. You settle in for some hot tea and conversation. As the visit progresses, you notice that it isn’t as bad as you thought it would be. You are discovering that this person you had always hidden from is wise and has much to offer.”

And later:

“Trust that the deeper you allow yourself to know your grief, the deeper the joy you will feel when grief's visits get further and further apart. There is no barricade large enough to keep grief out. Welcome it with open arms, serve it warm tea and sit with it without judgment, knowing that grief will come and then it will go, as long as you give it the attention it needs.”

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A new son, a new path

In case you missed the cover story of our last print issue, it's about one mom's journey to accepting her son's complex medical needs given disability is viewed as a taboo in her home country.

And in talking about complex needs, there's an excellent piece by a parent in the British Medical Journal called Never say never about our child.

It tells the story of a family raising a child with Trisomy 18, and how, when they first received the diagnosis, there was a change in how doctors viewed their daughter. For example, every time she was admitted for a surgery, they were asked whether they wanted her resuscitated. "Being asked the resuscitation question so often made us feel that doctors were questioning Isabel's right to live," the author writes. She includes five pieces of advice at the bottom of her piece on how health professionals can better support families like hers.

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How the tyranny of 'normal' hinders rehab

By Louise Kinross

In 2012, 25 scientists from six countries came to the University of Toronto to talk about new ways of looking at rehabilitation for children and adults. The result is Rethinking Rehabilitation: Theory and Practice, a book co-edited by Holland Bloorview scientist Barbara Gibson.

BLOOM: Why is there a need for this book?

Barbara Gibson: Much of what we do in rehab is about helping people to thrive in their lives—sometimes as they are. But because what we do comes from a medical tradition, there’s an assumption that disability is a 'problem' that needs to be solved. Much of what we're doing in research is still trying to 'fix' impairments. This assumption structures what we do and how it’s funded. Even though we talk about how we’re interested in quality of life, participation and inclusion, rehab is mostly thought of as a branch of medicine and funded largely by government ministries of health. The message we unintentionally send in rehab is that the child or adult needs to change, and maybe that’s not always the right message. We'd like to help people to thrive or flourish or live well—something that’s central to the goals of rehab programs—by expanding our thinking beyond the underpinning of medicalization.

BLOOM: What would be a medical assumption underlying rehab?

Barbara Gibson: In one of the chapters, the author, who has spina bifida, talks about needing a hip replacement for hip pain. Over and over again, she had to fill out questionnaires that asked how difficult it was for her to carry groceries or to climb the stairs without a railing. These are standardized assessments we use all the time in rehab that assess physical function. She used a wheelchair and she said 'None of these questions apply to my life, why am I filling these out?' And the assumption is that your quality of life is lower if you have trouble walking up stairs, or if you use a cane. We're not trying to get rid of the medical, but to be reflective about how we use it.

BLOOM: It must be demoralizing to be constantly compared against a norm that doesn't make any sense for you.

Barbara Gibson: 'Normal development' is an underlying principle that's ingrained in children's rehab. The way we provide therapy is to help children approximate the normal developmental trajectory as much as possible. Having said that, we know most of the kids we work with won't be able to do that. We know from the beginning that they won’t achieve ‘normal’ functioning and yet we test them against these parameters all the time and send them to therapy and say your goal is to do 'X.' In the end the child and parents know that they didn’t reach these goals, that they ‘failed’ according to the tests. By comparing children to those normal milestones we set up children to not be successful and to internalize those ideas. And parents, too. What parent doesn't look to see if their child is following the milestones and not feel disappointed if they're not?

BLOOM: What would be a different way of looking at rehab?

Barbara Gibson: The last chapter is about how we teach people with new spinal cord injuries to use wheelchairs. It explains that this is more than learning a skill—it’s adopting a new way of understanding their body, and by extension, themselves. The authors ask you to imagine if you were in an accident and you emerged as a different gender, or a different race. What kind of therapy would you need to learn to become a new kind of person, while still having elements of the old person?

BLOOM: I read that chapter and it was interesting because they likened learning how to use a wheelchair to making it a part of your body. So the wheelchair is more than something mechanical?

Barbara Gibson: Wheelchair users tell us ‘it’s just part of me. I can’t imagine myself without it.’ And often they don’t like it when someone touches their chair because it feels like they’re touching their body. It's a different way of doing things and ‘being.’ It's about how you incorporate the wheelchair into how you feel about yourself. Someone with a congenital impairment has the same process. They grow up figuring out who they are, how they think about themselves, and the rehab intervention they get shapes that. We need to do a better job of helping people have a positive sense of who they are in the world.

BLOOM: I think our overfocus on independence often works against that.

Barbara Gibson: A new way of looking at things is the notion of assemblages, which I write about elsewhere. Instead of talking about independence we talk about 'what are the dependencies that can help people live well?’ We talk about a conglomeration of elements—the person, the wheelchair, their speech generating device, their mom, a house that's designed for them. So we look at whether this assemblage of elements enables practices or disables them. We don't analyze whether the person is independent, but whether their dependencies are enabling. The idea is basically that it's completely okay to use whatever you need to use.

BLOOM: How is the book structured?

Barbara Gibson: There are three sections. The first sets the stage with where we are right now in rehab and where we came from. One of the chapters is about the history of rehab, starting at World War II. The second part is about how we apply these ideas in relation to particular populations or topics, like identity. For example, one of the chapters is about whether the setting you're in makes a difference to recovery.

BLOOM: What kind of things would be different in settings?

Barbara Gibson: We talk about therapeutic landscapes and the messaging in the environment. For example, is it a place for 'sick people' or does it enable you to think about what's new in your life and to think about your identity in new and different ways? Does it repress emotion? Sometimes patients are made to feel that they can only express positive emotions with professionals. You know, 'we're all cheerleaders here.'

BLOOM: There is sometimes that pressure to remain positive no matter how you're really feeling and that's exhausting.

Barbara Gibson: Setting is not just about the physical, but also how the environment is structured and how scheduling works. The last section of the book is about if we take this seriously, what would we do? If we rethink rehab, what might it look like?

Rethinking Rehabilitation can be borrowed from the Holland Bloorview library. It’s targeted to researchers, clinicians and students, but will also be of interest to families. The Canadian Institutes of Health Research and the Health Research Council of New Zealand funded the event at the University of Toronto that brought the 25 researchers together.

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