Tuesday, November 13, 2018

'Endangered Syndrome' ad sparks controversy

By Louise Kinross

Have you seen the new ad by the Canadian Down Syndrome Society? Young adults with Down syndrome dress up as pandas, polar bears and lions to suggest that, like these endangered species, their well-being too is threatened.

At endangeredsyndrome.com, the group shares why their existence is precarious: births are falling, 65 per cent are unemployed, and one in four live in poverty. They note that animal welfare organizations have 90 per cent more funding than Down syndrome organizations in North America.

You can read the group's letter to the IUCN Global Species Programme Red List Unit. 

Currently, there are almost twice as many hands-downs vs. hands-ups on the ad at YouTube, and one Toronto woman with Down syndrome criticized the ad for comparing people to animals.

I personally like the ad. I think it makes a powerful statement by reminding us that we're willing to devote more resources to endangered animals than to human beings.

I also think that the ad plays, in a clever way, on the stigma that people with disabilities are less than human. Many viewers will not want to be reminded that, according to research, we carry this kind of implicit bias at a subconscious level. Perhaps that is where much of the discomfort with the ad stems.

I recognize at least two of the actors from the play RARE, which was part of the Toronto Fringe Festival in 2012, and starred nine actors with Down syndrome telling their stories. One is Krystal Nausbaum (photo above), a former BLOOM role model.

Krystal and a number of the RARE actors came to Holland Bloorview for a BLOOM speaker night about the play and, during the discussion, spoke about their concerns with prenatal testing. These are people who speak their mind on a number of issues. They are not simply mouthpieces for the Canadian Down Syndrome Society. 

I find the ad's costumes beautiful and unique. They make me think of the beauty and value of diversity.

The ad directs people to the website to sign a petition. I was disappointed when I got there that there was, in fact, no petition. 

What did you think of the ad? Post a comment below!

Thursday, November 8, 2018

'Cancer throws you in the deep end'

By Louise Kinross

The other day I saw the image above on social media and clicked on I draw childhood cancer, a Facebook page run by Angus Olsen. Angus, who lives in Australia, is trained in animation and began drawing his experiences when his daughter Jane was diagnosed with an aggressive cancer in 2016 at age 2. “It was a way to visualize the unspeakable,” he says. Since then, parents of children with cancer worldwide have written to say his illustrations make them feel less alone. He’s now making comics to help explain procedures, like inserting a nasogastric (NG) tube, to preschoolers. These will help parents, child-life specialists and other professionals reduce anxiety in hospitalized children. We spoke about the role of drawing at his daughter's bedside, where he lived for months.

BLOOM: When did you first start drawing about Jane’s experience as a cancer patient?

Angus Olsen:
I was living with her in hospital in 2016 when she was doing some heavy chemotherapy, and her tumour grew rapidly—it did the opposite to what you expect them to do. It became quite serious. I was extremely lonely, and people kept asking me questions I didn’t know how to answer. So I started to draw a comic called Jane to explain how lonely it was, and to explain situations that you can’t quite explain in words. My wife had been living with Jane until she came down with flu, and then we swapped.

BLOOM: Did you draw on a daily basis?

Angus Olsen:
I kind of drew when I felt like it. I did a lot of sitting, staring at Jane’s numbers, and hoping they’d go up. It wasn’t just in her hospital room, but in the oncology clinic where she received chemo. One day, for some reason, she wanted to fly, so I drew her as a pilot flying a plane (see below).

Originally I was drawing for myself, but then I put them on Facebook. It was to try to explain to people ‘This is what it’s like.’ Then I joined a couple of pages dedicated to dads of children with cancer and started to make friends. Some of the dads had daughters who were at the same stage of treatment. Even though cancer is very individual, and everyone is different, they were very helpful because I could ask ‘Is this normal?’ Cancer throws you in the deep end.

While your child is doing treatment you feel like you’re abusing your child. You know it’s for their sake, and you just hope on the other side that they come out close to normal.

As I became friends with other cancer dads, there were little things that impressed me about their kids. The first child I drew like a warrior on a horse, because she was remarkable in how she continued to have a life despite what was going on. It started off with me asking these dads if they’d like me to have a crack at drawing their child. Rather than send me photos, they would have me go through their Facebook page so that I could see what the child looked like disease-free. Especially for some of the children who had passed away, I wanted to show what the child looks like free of cancer. Because in reality, the children who die are finally free of it.

BLOOM: Parents often feel helpless in hospital when their kids are going through these treatments. Did drawing provide a useful distraction or a way of thinking differently about what was happening?

Angus Olsen:
It was a way to visualize the unspeakable. It helped me, but I guess I don’t know how to explain it. I know now that I wouldn’t remember anything that happened after the trauma if I hadn’t drawn it. It felt like it needed to be done—to explain the unspeakable to people and myself.

My most recent art is about placing an NG tube. For a long time when I was in hospital, there was nothing about NG tubes. I didn’t know why I was ramming this tube down my child. I thought maybe there were ways I could be practically helpful to other dads of kids with cancer, by giving them something visual that explains why something like an NG tube is important. I only posted that the other day, and the reaction to it is shocking to me. It’s had more than 70,000 views.

BLOOM: Parents are often asked to hold their kids down for these procedures, and it’s incredibly traumatizing.

Angus Olsen
: It feels abusive. You feel like you’re abusing your child. Yet you know it has to be you, it can’t be a stranger doing it. At least that’s how I felt. That was really rough on me.

There were lots of other things, too. Like the bandage on the dressing on the child’s NG tube can tear their cheeks off. The actual insertion is quite quick, but the dressing change can take a long time and cause a lot of pain. When Jane’s was finally taken it out, she’d had it for more than a year. Some children vomit them up, and are irritated by it the entire time.

BLOOM: When you talk about the child’s cheek getting ripped—wouldn’t they have come up with some kind of adhesive to prevent that by now?

Angus Olsen:
There’s a lot of technique involved, but sooner or later, the child’s cheek gets worn down, and they run out of skin. And because children are children, and play, sometimes they bump or rub into something, and it tears off. The nurse doing it is very nervous, too. It’s very traumatic on nurses.

BLOOM: That’s what we found in our narrative group for inpatient nurses—that clinicians can have feelings of helplessness and grief when they aren't able to prevent suffering, in the same way that parents do.

Angus Olsen:
If the nurse is a new nurse, if they’re fresh at this, you’re a parent comforting a nurse. It’s an intensely personal relationship. Even though it’s the nurse’s job, it’s incredibly traumatic on them.

I had one male nurse at the local hospital say that Jane’s case was the most traumatic thing he’d seen in his life, and it was the only time he’d ever cried in clinic. They’re all clearly impacted by what they do, but they keep going. I have nothing but praise for nurses.

BLOOM: Did you ever make mental notes of interactions with staff you found extremely helpful, or not helpful, in order to later illustrate them?

Angus Olsen:
I’m pretty forgiving when it comes to the clinicians. I know they’re human. It’s really a struggle for me to watch a new nurse trying to grapple with what they’ve got to do. You don’t want your child to be the experiment to learn what they’re doing, but you know they’re going to help thousands of children. I’ve never come across a bad interaction with a clinician.

BLOOM: Have you thought of doing a graphic novel?

Angus Olsen:
I’ve done graphic novels in the past. Facebook is kind of like a sound bite. People can see an image, interact with it and move on. You can pack a lot into an image, and have it received by many people. The distribution of a graphic novel I don’t think is as wide.

For example, the comic about the NG tube is only eight frames, so you can swipe through it with your child sitting on the bed. I’m looking for a short impression, something that hits someone in the heart and they say ‘Yes, yes, this is me.’

In the future I’d like to draw all of the different childhood cancers.

BLOOM: Did your images have an impact on Jane, or was she too young at the time? Your series about the NG tube could be used by child life specialists to prepare kids.

Angus Olsen:
Jane was too young. She was just excited: ‘Oh, that’s me. Daddy drew me doing this.’

BLOOM: Were there any downsides to your drawing? I’m thinking of an interview I did with a dad of a toddler with type 1 diabetes. He was a filmmaker, and when his daughter was diagnosed, he began filming. But at a certain point, he realized he was hiding behind the camera, because he was so afraid of making a mistake with his daughter’s treatment.

Angus Olsen: For me, the downside of this drawing is that these children do die. It’s actually quite a lot of emotion. I’ve had to wipe tears off my iPad at times. It impacts me in ways I didn’t realize it would. Parents of deceased children from all over the world message me to see if I’ll do their child’s portrait. I’ve had to stop doing that, and focus on the work with a broader impact on cancer, so it’s useful to thousands of people. It’s all about using your gifts in the most useful way.

BLOOM: How is Jane?

Angus Olsen:
She’s been in remission since 2017. She’s five, and starting school. She’s doing very well, but she’s still having a lot of physio because her cancer made a mess of her legs. So she’s learning how to walk properly and we’re training her to develop her legs. The scenario they gave us was that she’d either pass away, or be on a bag for the rest of her life. The fact that we came out with a relatively healthy child when we were dealing with the reality, in hospital, that she could die, was very, very fortunate.

BLOOM: It must be surreal to have had such an extreme experience.

Angus Olsen:
It is. You know that comic of me sitting staring at a blank wall? Cancer parents understand that image. Very recently, Michael Bublé’s been talking about his struggle with what’s been happening to his son. And he says things like ‘I can’t talk about it. I can’t explain it. I don’t have words for it.’ I understand that. We cancer dads understand this poor guy is riding our world. Even though his child is in remission, you don’t go back.

BLOOM: You mentioned that the other parents living in hospital were primarily moms. Was that isolating?

Angus Olsen:
My wife made a lot of friends because it’s usually mothers living there. Yes, I’m a very private person, and I don’t do well with counselling and things like that. I found the Facebook groups for dads far more helpful than talking to a parent in person. 

Our daughter’s social worker was invaluable to me, and certain nurses were very comforting. Her surgeon was very good to me as well. So I did have people. But with the urgency of what was happening, and the reality that she could die today, it was too much. I couldn’t leave her bedside to sit down with another parent.

Wednesday, November 7, 2018

'Learn from each other's heart' is cartoonist's message

Illustrations ©Graphic Universe™, a division of Lerner Publishing Group

By Louise Kinross 

My Beijing: Four Stories of Everyday Wonder is a magical watercolour children's book by Chinese master cartoonist Nie Jun.

This is how Kirkus Reviews described the book:

"A young Chinese girl and her grandpa navigate life's challenges and joys in a small neighourhood [known as a hutong] of Beijing. In this graphic-short story collection, the author introduces readers to Yu'er, a girl with an unspecified physical disability that limits her mobility, and her loving grandfather.

"The first story opens with her dream of becoming a champion swimmer and a belief strong enough to carry her above her naysayers. From there, readers meet a boy who helps her fight off bullies, encounter the fantastical properties of an old mailbox, and finish by witnessing Yu'er's reconciliation with a grumpy neighbour."

The Lerner Publishing Group had BLOOM's questions translated into Chinese, so that Nie Jun could answer them. His responses were then translated back into English. My Beijing is Nie Jun's first book published in English. We are thrilled to bring you his words.

BLOOM: How did you get the idea to include a character with a disability?

Nie Jun: In this book, Yu'er is very brave and self-confident. Her biggest difficulty in achieving her dream is her disability. But such a situation can make more people identify with her inner confidence and optimism, and also make the relationship [between] her and her grandpa warmer and more dramatic.

BLOOM: Is Yu'er based on a real person?

Nie Jun: When I was a child, I lived in a large courtyard house where many families lived. There were many children jumping up and down on the colourful roof. There was a child with physical disabilities in the neighbourhood. I remember that her mother used to take her to the street to sell small groceries. Her mother usually hid somewhere far from her and watched.

At that time, we often tried to tease the girl and deliberately anger her. Looking back now, I think her mother was training her to survive. In contrast, we so-called normal children were doing some boring things while she had already learned to face life. This memory affected my understanding of Yu'er.

BLOOM: The theme of the injustice of exclusion comes out in your bookwhether Yu'er is excluded from taking swimming lessons, or the butterfly's wing is ripped off by the bullies, or Pumpkin can't get the art buyer to see the value of his work. Did you want readers to see the fragility in all of life?

Nie Jun: There are many injustices between people. Especially when it comes to a weak person, the strong group will psychologically exclude or even expel them. This is human nature.

Based on this view, I prefer to show a peaceful way of getting along in the story. People don't show a deliberate pity or give preferential treatment to Yu'er. They don't regard her differently from others. This way of getting along makes Yu'er feel happy and makes her heart sunnier.

I also hope that everyone can see a kind of reconciliation in the story. Yu'er's beautiful swimming makes the children who once laughed at her exclaim with admiration. Yu'er is not sad because the children bully her, but she cries for the broken wings of a butterfly. Although Pumpkin can't get the art buyer to take his work, in Yu'er's eyes, he is greater than any master of art. He finds a true respect.

BLOOM: Grandpa is the hero of the story. He has endless imagination and sees the good in everyone. In Western culture, seniors are often devalued. Why did you want the hero of the story to be a senior?

Nie Jun: Grandpa is a typical old Beijing native, warm, kind, and humorous. In a Chinese family, the seniors are more willing to share their children's pressures in life, such as caring for grandchildren. This can also reduce the loneliness of the seniors. This kind of relationship makes the grandparents and the grandchildren dependent on each other, which is very normal in a Chinese family.

For example, when I was a child, my parents worked in another city for a long time. During this time, I was living with my grandpa. At the very beginning, we did not get along well. But as time went by, we became close. For me, this kind of family love is worth recreating.

BLOOM: We see Yu'er using a crutch or being pushed in a cart or carried on Grandpa's bike, but we never see her in a real wheelchair. Is there a reason?

Nie Jun: I really have to explain that: a wheelchair is very inconvenient in the old Beijing streets. The gates have high threshholds. There are also many stone steps and no elevators. That's why Yu'er usually uses a crutch.

And the cart she is pushed in is not like the cart we see in supermarkets. In Beijing, we call it "Dao Qi Lv (riding a donkey in reverse)." It's a kind of common bike with a cart in front of it, and it's very convenient. This design is more like the rest of what you see in the old street, and it makes Yu'er's life not that different from others. I hope that in the eyes of readers, she is a very cute and ordinary little girl who grew up in a hutong.

BLOOM: At the end, Pumpkin gets a second lease on life when he begins teaching Yu'er how to paint. What do you learn from your students?

Nie Jun: I am now working as a visiting teacher at the Beijing Film Academy every Tuesday afternoon. Mainly I discuss the creation of comic stories with my students, from how to write a scenario at the beginning, to how to finish the whole work.

In the process, I've learned that a creator should never discard curiosity about the unknown world, even if your guess is very wild or might disappoint you when you contrast it with the real world. As you mature and your knowledge increases, you will find the difference between your imagination and reality becomes smaller and smaller. It may be a good thing, but it also means that a creator can become more cautious.

So maybe the most precious thing for a creator is always keeping a childlike curiosity. Just like what Pumpkin said when he saw Yu'er's work, it has a moving, innocent power.

BLOOM: What ideas about disability do you hope children take from the book?

Nie Jun: An equal relationship is the most important thing. Do not treat people with disabilities with exclusion or pity. Step past your differences, learn from each other's heart.

BLOOM: As this is your first book in English, what ideas about China do you hope readers take away?

Nie Jun: I am very happy to have the opportunity to publish the book in English. I haven't been to America or Canada yet, but it makes me feel so excited that my work can be seen by more people (and special thanks to my agent, Mr. Wang Ning, who has given me a lot of help in these years).

Although we are in different cultures, I believe that readers could feel lots of common emotions from the story, and I hope people who read this book could have a chance to visit China. Beijing is a city full of stories; it has a long history but is also developing rapidly. For this reason, the values and living standards of people here are making interesting changes. But I hope that through the story of an ordinary family in the old street, we can see those unchanging feelings and love for dreams.

Thursday, November 1, 2018

Earning child, parent trust is job number 1 for surgeon

Photos and interview By Louise Kinross

Dr. Unni Narayanan (above left) is a pediatric orthopedic surgeon at the Hospital for Sick Children who sees patients at Holland Bloorview while they do their rehab here. Dr. Narayanan went to Madras Medical College in India and trained as a resident at the University of Minnesota. This included a rotation, and then an extra fellowship year, at Gillette Children's Specialty Healthcare in
 St. Paul, which is a leader in care for children with cerebral palsy. Much of his time at SickKids is spent teaching fellows and residents. 

A number of parents suggested Dr. Narayanan would make a great interview. One of these, Samadhi Mora Severino, explains why Dr. Narayanan stands out: "What I adore about him is how humble he is and how attentive he has been with Kian (above right). Kian is partially verbal but he makes all the effort in the world to engage with him. I remember when we were doing serial casting, he was wrapping the cast around Kian's leg so they could count together. Not all physicians can bond with children with severe disabilities. Kian feels safe around him and loved by him. Kian has made it clear that he wants to be a doctor one day, and I know Dr. N is his role model."

BLOOM: How did you get into the field?

Dr. Unni Narayanan:
There are no medical people in my family, but I remember being interested in a career in medicine. I went to medical school in India from 1982 to 1987. At that time, people had blinders on, and a successful career meant being a doctor or an engineer.

Early on, I realized two things: I wanted to do surgery, and I wanted it to be a pediatric specialty. Some of the role models I saw were very caring individuals. It appealed to me—not just in terms of the surgical technical skills—but the complexities of working with children posed an extra set of challenges.

As a foreign medical graduate I was lucky to get a position at the University of Minnesota, and they had a very strong pediatric orthopedic program within the residency. It was their expertise and devotion to kids with cerebral palsy (CP) that greatly influenced what I did.

BLOOM: Of all the things you could do as a doctor, why surgery?

Dr. Unni Narayanan:
The ability to see changes—that you’re actually affecting change in a very real way by altering the anatomy. But I think to a great extent it’s who your teachers are.

BLOOM: What types of surgeries do you do now?

Dr. Unni Narayanan:
The major focus of my practice is cerebral palsy and broadly speaking there are two kinds of patients.

The first are kids who are able to walk, albeit with some difficulties. We do operations on them to help them walk better—walk further, faster and less inefficiently, so they have less pain, and can be more independent.

The second category is very different. These are kids who are more severely involved, who rely on a wheelchair for mobility and depend a great deal on a parent or carer to look after most activities of daily living.

The operations we do for these kids are focused on achieving one of the following goals: To prevent pain, if there’s a concern pain is likely in the future, or to relieve pain; to make it easier for parents to look after these kids; and to improve the kids’ health. All of these goals combine together to improve and preserve quality of life.

BLOOM: What is a typical day for you like?

Dr. Unni Narayanan:
The first category of operations is focused on gait-related goals. They tend to be everything from simple, short procedures isolated to one leg or just the foot or ankle, all the way to surgery at multiple levels at the hips, knees, thighs, lower legs and foot and ankle—so several operations done concurrently over the course of the entire day, and the child could be asleep for six to nine hours.

Our operations with our more involved patients are almost invariably long operations. They focus on the reconstruction of hips. Many of these kids have hips that tend to slide out of place and, in doing so, will create pain—if not now, then in the future. Or they may have contractures, where the muscles are too short around the hip, which make it very difficult to diaper and dress them and position them. These are complex operations to put legs back in place or to release and lengthen tight muscles. For different reasons they are big operations that can last seven to nine hours.

BLOOM: How do you stand for so long?

Dr. Unni Narayanan:
There are lots of occupations that require people to stand on their feet. If you’re serving coffee at Tim Horton’s, it's tiring at the end of the day. That’s where the training and repetition comes into these operations. And they are not done single-handedly. There’s a whole team involved.

First, there's the anesthesiologist, who is crucial not only to keeping the kids asleep, but instrumental in reducing the pain they’re likely to have after the operation by putting in epidurals and blocks. We have nurses who are really skilled at facilitating the procedure in terms of having equipment ready and helping with technical aspects. In the operating room I am fortunate to work at SickKids because I have the assistance of a fellow and a resident. The fellow is a qualified orthopedic surgeon—someone who is doing what I did 20 years ago.

The fellows need opportunities to do parts of the operation, but it has to be done under supervision, with me taking full and primary responsibility that the quality of what is done is as good as it can be. Usually at about mid-day I give my residents a break to get some lunch.

BLOOM: But you don’t take one?

Dr. Unni Narayanan:
No. But that’s only because I’m not a lunch person. Some operations may take a lot more than 12 hours. For those types of operations we have to take a break, and we let parents know that will happen. The children remain safely asleep in a sterile area.

BLOOM: What are the joys of the job?

Dr. Unni Narayanan:
It’s quite a privilege to work with kids. My research interest is in trying to understand whether what we and others are doing is making a meaningful difference to their lives. When you see evidence of that, reported in ways that are more than just the technical difference—the hip is in—that’s very gratifying.

It may be that the child had pain before and that’s gone away, or the parent couldn’t dress them before, and now it’s easier. Or in the case of a child we are trying to help to walk better—is that translating into less tripping and falling, less pain, walking longer distances, and participating more with friends and in recreation or sports?

We’re working with two patients: the child and the parent. I can only imagine, and even that would be difficult, to put myself in the position of a parent who’s giving up full control of a child to someone for an extended period of time where invasive things are happening. To allow that to happen to your child requires me to have empathy for parents, and to engender the kind of trust that I have to earn. The entire process where you get to know a family and the child, and earn that trust over time, till a day comes where an operation is imminent, makes my work life gratifying.

BLOOM: What are the challenges of the job?

Dr. Unni Narayanan:
In a condition like CP, understanding that one, we have no cure for CP, we can’t fix CP. A child with CP before the operation has CP after the operation. Recognizing that is important to me, but also how we communicate that to families over time, for them to understand, is not easy.

The primary problem is in the brain, not in the muscles and the bones, which is where I’m working. I’m working on the periphery, quite far away from the primary problem. I have to appreciate that the kind of changes we’re making, while they might be very helpful and go a long way to having a positive impact on children, may not entirely be at the level of what the parents’ hopes are.

That humility of understanding what the extent of our interventions can do, and communicating that, is a challenge, because, of course, parents have expectations that come from hopes, which are inevitable and understandable. It’s negotiating that.

BLOOM: Yes, I’m sure that parents have to grow into that kind of understanding of what the limits are.

Dr. Unni Narayanan:
It doesn’t happen in one conversation, no matter how receptive a parent might be. It’s my responsibility to do it in an empathetic way, and in a way that doesn’t dash a parent’s hope—hope is an incredibly powerful mechanism to help families cope.

It’s also important to understand the perspective of the child. We’ve found that parents ascribe a certain level of concern about functioning that is consistently greater than what the child ascribes. Parents tend to make comparisons with their other children who don’t have CP, or with the child’s peers. Parents don’t live with the condition in their bodies, so their sense is that it might be worse than what the child [reports].

We need to understand the perspective of the child and the parents, and align our goals to take them both into consideration. These are not 10-minute appointments. They can take the better part of an hour.

BLOOM: How do you find the time?

Dr. Unni Narayanan:
For new patients, we build that into the appointment, but the reality is I keep a lot of patients waiting in my clinic. I hope they realize, my apologies notwithstanding, that I’ve had to take longer than anticipated to have a difficult, complicated discussion and, having waited, they will also have that time when they need it.

Another challenge is that parents have access to all kinds of information from different sources—which is a good thing. They do their own homework and research, which allows them to ask questions.

However, sometimes they’re exposed to information that may not be well vetted and evidence-based. Yet it’s appealing, because large promises are made, which play to the vulnerability of their hope. They may ask how come we don’t offer certain procedures here. Is it because we don’t know what we’re doing?

These conversations can be difficult. There are unethical practices around the world, and south of the border, that take advantage of parents wanting to leave no stone unturned. And of course that is a completely appropriate sentiment. Why wouldn’t a parent want to explore everything possible? So how can I share information so that they trust what I’m saying, and I don’t leave them wondering could it be better somewhere else?

BLOOM: What emotions come with the job?

Dr. Unni Narayanan:
As a health-care professional, empathy is essential. I enjoy interacting with the kids. I take great pleasure in getting them to crack a smile. If I have to do big operations on them they have every reason not to be happy with me. But I try to establish a rapport with them and have them not be afraid of me. We try to make it a less anxiety-ridden experience: having a sense of humour, teasing them and finding a way to make them laugh.

Another challenge is the operation on its own is insufficient, without the kind of support and therapy and rehab required to make operations work at the end of the day. For that we are extremely lucky to be a publicly funded health-care system. That allows us to have kids spend up to three months at Holland Bloorview for free, where they can get therapy every day and not miss a day of school. Those kind of supports are just not available anywhere else in the world.

BLOOM: What about emotions you experience when an operation doesn’t go as you planned?

Dr. Unni Narayanan:
I’ve heard some surgeons say ‘Would you rather be a compassionate surgeon or a competent one?’ You should be both. If something goes wrong, I genuinely feel badly about it, and I need to communicate that to the family. If I think I have contributed to that, I have to say I’m sorry. I’m responsible, and with that responsibility comes a level of caring—not only to take joy from when things go right—but feeling everything from regret to feeling sad or bad that something hasn’t gone right. Fortunately, that happens infrequently.

BLOOM: How do you help your fellows cope when things don’t go as planned?

Dr. Unni Narayanan:
By being a role model. When something has gone wrong, they know it, and pretending it hasn’t gone wrong, or that it went wrong because of this and not that, causes you to lose credibility. Role modelling to the fellows to be honest. Saying ‘This is where we could have done better, where we made a decision, in retrospect, which was the wrong one.’

I need to walk the walk when I’m communicating with families, so that my fellows see that, and hopefully will incorporate it into their practice. By the way, there’s no one single way to be a good communicator, or to show empathy. Everyone has their own skill set, and their own personality, that they draw on.

BLOOM: You said earlier that humility is an important quality.

Dr. Unni Narayanan:
Yes. But at the same time, we can’t hide behind humility for failures to do things properly in order to prepare for a complex operation. If something goes wrong, or is unexpected, it is despite that planning, not because we didn’t do the thoughtful planning ahead of time.

It’s my job as a teacher to model to my fellows and residents ‘these are the things I’m thinking about in how we came to the decision to go ahead. Here are the different things I’ve done to ensure when we go to the operating room, we will not be surprised, because we have thought about all of the different steps we may have to take if we encounter an unusual situation.’

Nine out of 10 times there’s a particular sequence of steps you will follow. In one of every 10 children, you’ll encounter something different about the child’s anatomy, or the way the child is presenting. How do you recognize that, and how do you make decisions intraoperatively? The more thought you’ve put into it ahead of time, it won’t come as a surprise. If we know something may happen, we will have backup plans. We shouldn’t ever say that something didn’t work out because we didn’t think about it ahead of time, and do our due diligence.

BLOOM: How do you manage stress?

Dr. Unni Narayanan: I don't have any particular strategy to manage stress, but then I wouldn't describe stress as defining much of my work or personal life, beyond the average dose one expects. I play tennis for fun, and enjoy traveling and many other things with my wife, now that we are almost empty nesters. 

BLOOM: You direct a fellowship program in orthopedic surgery.

Dr. Unni Narayanan:
One of the privileges of working at SickKids and Bloorview is that the fellows keep us accountable and fresh. They’re constantly asking questions: 'Why, why, why?'

BLOOM: What do you look for in terms of applicants?

Dr. Unni Narayanan:
I have the privilege of going through 100-plus applications from around the world. I’m looking for clearly a track record supported by letters of recommendation and a CV and some sense from the personal statement about what his or her interests are in the future. We’d like to think we’re training the next generation of pediatric orthopedic surgeons and researchers who can be ambassadors.

Right now we have two fellows from the U.S., two from the U.K. and one from Portugal. Each year, we choose two from North America, and three from other parts of the world. Once I’ve created a short list, we do in-person and telephone interviews. When we do telephone interviews, five of my colleagues and I will have interviewed them, and we have a rating system.

BLOOM: But if two candidates look excellent on paper, is there something you look for in terms of their personality?

Dr. Unni Narayanan:
The question is, how do you find that out in a single meeting, or in a telephone interview? I think we all imagine we can, and we do our best.

All things being equal, we look for diversity. For example, we recognize that last year we had no women in the program. This year we have three.

Another aspect of diversity is where they come from. Candidates who may otherwise be very qualified, but who apply from Southeast Asia or Africa or parts of South America, are at a huge disadvantage.

It’s harder to vet their applications because their health-care systems may be different from ours. I’m very proud to be a member of a division where my colleagues accept that from time to time, we need to take a chance on someone who looks good. I grew up in India and trained there, and if someone in the states hadn’t given me a chance 26 or 27 years ago, I wouldn’t be here.

BLOOM: If you could change one thing about our children’s health system, what would it be?

Dr. Unni Narayanan:
Working with kids with CP is not merely surgical. We work very closely with our developmental pediatricians and physios and other therapists throughout their continuum of care.

The big black hole is when they graduate, when they get to this arbitrary age of 18 or 19. What then? We have in place less than perfect ways for them to continue to get some oversight with our physical medicine and rehab counterparts who look after adults. But there simply isn’t, within the system, a critical mass of adult providers who have the expertise, and/or the experience, or the interest in providing care for adults with CP.

BLOOM: I don’t see this being addressed systemically. What might be a solution?

Dr. Unni Narayanan:
There are different models and I don’t think any single model may work. We may have to have a multi-pronged way.

One is for us to get rid of this notion that SickKids and Holland Bloorview are pediatric institutions. For certain conditions that have their onset in childhood and are chronic, the system should continue to support the hospital to follow the patient across the lifespan.

At a higher level, the policy makers and Ministry of Health, in collaboration with us, should say that for certain childhood onset chronic conditions, we will make an exception to continue care. So rather than have Sunnybrook do a surgery for an adult, we will enable SickKids to do it.

Another idea is to have the system identify three or four providers who may have a niche interest in this population, and we would work with them. So perhaps I come to the adult institution because I know how to do this operation, and I need to get the privileges and time to do that. Or can we provide you with the operating room time at SickKids, because we are better equipped in taking care of the entire patient—we understand the other things that go alone with the condition.

BLOOM: What is it like working across two hospitals?

Dr. Unni Narayanan:
We have two institutions—SickKids and Holland Bloorview—that work to complement each other. Most rehab in other places is done at a children’s hospital. We’re very lucky that it’s separated.

I much prefer seeing patients with CP and other chronic conditions at Bloorview, because I have more time there, and it’s designed and built to accommodate children in wheelchairs. Hopefully the clinics in SickKids’ new building will be friendlier to wheelchair access. Right now, our examination tables don’t go up and down, and there are no lifts, so it really isn’t designed for kids with chronic conditions.

BLOOM: If you could give yourself advice on your first day, with the experience you have now, what would it be?

Dr. Unni Narayanan:
Stick with it, because you’re going to be very happy doing what you’re doing. I’ve been very lucky, either by accident or design. I stumbled onto a sub-specialty I love, and an environment that is so supportive, that allows me to do what I’m doing. I have to pinch myself doing what I’m doing. And the kind of colleagues I have at Bloorview—with Darcy and Golda and my physio colleagues—and at SickKids, they are hugely influential mentors. I would not change anything.

Friday, October 26, 2018

Lived experience 'helps me go to the darker places with families'

By Louise Kinross

Holland Bloorview social worker Val Lusted has spent almost 20 years working with youth with brain injuries caused by illness or trauma, and those hospitalized for rehab after bone surgeries or spinal-cord injury. Of course, that also meant working with parents who were under extraordinary stress and emotional upheaval. Val has always been a dear friend of mine, and I recall several times when, at my urging, she stepped out of her comfort zone to do live TV interviews about brain injury on behalf of Holland Bloorview. Thanks Val! With Val retiring next week, we took a trip down memory lane.

BLOOM: How did you get into the field?

Val Lusted:
I knew I wanted to be in the helping professions during my high school years. I just had a sense that my personality was such that I liked and enjoyed being in a helper role.

BLOOM: I understand your first job here was in a different capacity?

Val Lusted:
When I was in my undergrad at Ryerson, I had a part-time job as a therapeutic recreation staff at what was then the Bloorview Children’s Hospital. Back then it was a chronic-care hospital, and I worked on the weekends. I ran different programs for adolescents. One was a baking group to help the kids work on their fine motor skills. I remember one day we were trying to bake bread and we didn’t allow enough time in between to let it rise, and the bread came out only a couple of inches high. We also took the kids swimming in the pool. I had my F-class licence so I drove the Bloorview van when we’d take the kids to Fairview Mall to practise independence.

They knew I was studying to become a social worker, and they informally shared that they didn’t have a lot of respect for the profession. I think they felt abandoned by their families at this chronic-care institution, and they didn’t feel that their social worker had leveraged any other life for them.

I took it to heart as a challenge about really being able to connect with my clients down the road, so I could understand how I could best be of service to them. It didn’t dissuade me from my professional path, but it highlighted for me that it wasn’t going to always be easy to engage clients in a meaningful way.

BLOOM: What areas of the hospital did you work in as a social worker?

Val Lusted:
For 15 years I was with the family support service, working with adults over age 16 with acquired brain injuries in the community. It was a very tight community and a very unique setting to be able to go into people’s homes or schools or places of work to help them carve out new meaning after rehab discharge. When that program ended, it was a real loss to me and my identity. For the last four years I’ve worked with inpatients and day-patients on the SODR unit.

BLOOM: What is a typical day like now?

Val Lusted:
One of my primary roles is to chair family team meetings, to offer pre-admission orientations to families, and to provide individual counselling sessions, often for parents at the bedside around caregiver coping. Occasionally I also work with the teens. The other general function is offering various groups and workshops for clients and parents.

BLOOM: What were the joys of your work back on the family support service team, and now?

Val Lusted:
In the family support service you could establish a really intimate relationship, because you had the privilege of coming into people’s natural environments. It’s also a different lens when you offer psycho-social support by following people over a long period of time.

On SODR, I work with some clients with pre-existing disabilities, and some who have new diagnoses or traumas. The joy for me is being able to walk that part of the journey with them. They often come in to the unit shell-shocked and overwhelmed, and some start to feel trust in the therapy team as they progress through rehab and they start to explore what I call their new normal. I would be lying if I said everyone walked out emotionally well-adjusted to their current state, so I seek out other support in the community for their journey after discharge.

I want to give a shout-out to the SODR team. It’s a very busy unit with high volumes and increasing complexity of children’s medical, therapy and psychosocial needs. It’s a very dedicated team of clinicians and being able to witness true collaboration in working with these complex demands is also a joy.

BLOOM: What were the greatest challenges of each area?

Val Lusted:
On the community-based side it was the traffic [laughs]. As the service delivery model changed, when they brought in centralized scheduling, the clinician lost some of their autonomy at being able to manage their caseload priorities and appointments. They were evaluating the usefulness of the service based on a clinic model with productivity targets.

On SODR, I would say the challenge is the volume and complexity of clients vis-à-vis the existing psycho-social resources. 

BLOOM: What emotions come with the job?

Val Lusted:
Inspiration, gratitude, humility and kindness. There is also the heaviness of the work—call it vicarious trauma if you will. Sometimes feeling overwhelmed, sometimes feeling powerless, sometimes feeling frustrated—more with systems gaps than with the client or families themselves.

BLOOM: How do you manage the heavy emotions?

Val Lusted:
I try to practise work-life balance, some days more effectively than others. I go out with friends and family and have activities and interests with them. I have a ladies walking group in my neighbourhood. Watching my son on the ice at the hockey arena gives me joy. I’m not very good at meditation. Music is my meditation, and I have gone on a few spiritual retreats. These aren’t religious. I’m seeking out a more grounded spiritual connection, most of which is my church is nature, time in nature.

BLOOM: Nature is healing. Have your ideas about disability evolved over the years?

Val Lusted:
I have a personal, lived experience with the world of disability related to my husband Rick, who has been a quadriplegic for many years. I also have a son who’s adopted who has some invisible disabilities. I would say that those two have been my greatest teachers. 

That lived experience helps me be more compassionate, and it helps me to go to the darker places with families. Families need a safe place to go deeper. Some clinicians choose to stay at the surface out of self-protection, in my view, but it’s also a function of the faster pace of the work. If you have to see a client and get on to the next one in 35 minutes or less, you can’t open a can of emotional worms because you won’t have time to process it.

BLOOM: What have you learned from families?

Val Lusted:
Resilience, in a word. The families that are able to explore their inner strengths, as well as their ability to reach out for help from others when needed, are the families that model resilience every day for me.

BLOOM: If you could change one thing about rehab for children, what would it be?

Val Lusted:
It’s a metaphor—the mushroom needs to be turned upside down. It means the funding needs to be more adequately allocated to the community side of life, in order to support a longer-term rehab journey within a natural environment.

The other thing I’ve been thinking about a lot is that when the disability world can touch the mainstream world, that’s when we’re going to change the world, and create real opportunities for inclusion and belongingness. Instead of communicating to the converted, we have to educate people out there. The Dear Everybody campaign, if we can get that out in the mainstream, is a fabulous initiative.

BLOOM: What skills does someone need in your role?

Val Lusted:
I think I started off as an optimistic person, and as I matured and gained various professional and lived experiences that touched the world of disability, I think of myself more as a realistic optimistic.

BLOOM: Do you mean that initially you were somewhat naïve?

Val Lusted:
Yes. Green and naïve. 

As a clinician, you also need to be able to read and respond to the intense emotions of others, while being self-aware and reflective about how the work is impacting you, and being able to prioritize. There’s a certain level of flexibility and pragmatism that’s needed, and an ability to network and collaborate with others—both informally and formally.

Thursday, October 25, 2018

Meet Karmzah, a heroine with cerebral palsy and super powers

By Louise Kinross

Farida Bedwei is a Ghanaian software engineer who's launching a new comic book with a super hero who has a disability.
 Farida, who has cerebral palsy, loved comics as a child, but never saw any characters who looked like her. So she created Karmzah, a no-nonsense warrior whose crutches give her the power to fight, run, flip and fly. Karmzah will be available online on the Afrocomix app in the Google Play store at the end of October. Farida is on business in Paris, and we spoke over Skype.

BLOOM: How did you get the idea for Karmzah?

Farida Bedwei:
I realized there wasn’t representation for super heroes with cerebral palsy. There are a few super heroes who have disabilities. But there are a lot of children and adults who don’t see their disability represented in the world of cartoons and comics. That’s why I decided to come up with this super hero. Growing up, I used to love the comics, but I never felt represented. So I decided to do something about it.

BLOOM: What do you hope readers take away from the comic about disability?

Farida Bedwei:
For me, the most important thing is that having a disability doesn’t mean that that is your whole life. We tend to focus too much on what the person can’t do, and miss out on what the person can do.

For most of us with disabilities, we are going to have the disability our whole life, so we have to redefine the way we look at it, and make the best out of it and live our lives to the fullest.

Sometimes we tend to end up resenting our wheelchair or our other aids, because we feel they make us different from any other person. But these devices help us get the independence that we crave, so I made a super hero who gets her power from her crutches. Without her crutches, she loses her power, and becomes like anyone else with cerebral palsy.

I want children to learn how to take pride in the assistive devices they’re using, and not see them as something that is making their lives miserable.

BLOOM: How was disability viewed in Ghana when you grew up?

Farida Bedwei:
There was a stigma about it, and there still is. We are very religious in Ghana, and when it comes to children who are born differently, people immediately attribute it to either a curse, or to something that your ancestors or your parents did wrong. That is a mindset that we have to change.

There are people who allow the perceptions of a society to affect their lives, but I’m not one of them. I didn’t let those things bother me.

BLOOM: Was it hard to sell other people on your idea about a disabled super hero?

Farida Bedwei:
No, it’s something people have waited for. People are literally asking ‘When is it going to come out?’ because they want to buy it. These are not just people with disabilities or parents of children with disabilities. But people with no relation to disability who are interested in it, and say it’s about time.

I ran into Eyram Tawiah, the CEO of a local comic book and animation studio called Leti Arts at an event in August. We got talking, and I told him about this idea for a comic I had. That is how Karmzah came about, less than two months later.

BLOOM: Who illustrates the book?

Farida Bedwei:
It’s done by Leti Arts. I wrote the script and the dialogue, and they do the illustrations based on my scripts.

BLOOM: Was it challenging to have someone else draw your characters?

Farida Bedwei:
It was very easy. We have the same mindset, and they are able to make my vision come alive in a great way.

BLOOM: When is the first issue coming out?

Farida Bedwei:
It will be available online next week in the Afrocomix app in the Google Play store. The print copy will be ready to be purchased in Ghana in the middle of December. Next year people will be able to purchase the print copy from other parts of the world.

BLOOM: I understand you are a software engineer and the co-owner of Logiciel, which sells a microfinance banking software used by over 200 financial companies in Ghana?

Farida Bedwei:
Yes. These companies are smaller than banks, and give loans and financial services to people who run small businesses or don't have a steady income, and who don't qualify for loans from banks.

BLOOM: Do any of your skills as a software engineer lend themselves to launching a new comic book?

Farida Bedwei:
No, they are two different areas of my life. They don’t intersect at all.

BLOOM: So is working on your comic book a bit of a reprieve?

Farida Bedwei:
Yes. It’s something totally different. It gives me a lot of satisfaction that my life isn’t just about writing code. Sometimes you need to add something to make your life more exciting.

BLOOM: How often will the comic come out?

Farida Bedwei:
We are planning on four issues every year.

BLOOM: Would you say Karmzah’s personality is like yours?

Farida Bedwei:
I don’t know. I guess someone who knows me would be a better person to answer that. I try not to write about myself, but I guess eventually you end up adding a bit of yourself. Karmzah is a no-nonsense person who solves problems and fights bad guys.

BLOOM: What advice would you give parents raising children with a wide range of disabilities?

Farida Bedwei:
I would tell them to treat their child as normally as possible, because although the child has a disability, the child is a child first. Enjoy them. We all want the same thing: we want to be loved and we want to feel that we can achieve anything in the world. As much as you can, give your child the freedom to be who he or she wants to be.

Wednesday, October 24, 2018

Her son's stroke puts a Nunavut doctor on the other side of care

By Louise Kinross

Family doctor Madeleine Cole works at a 25-bed hospital in Iqaluit doing emergency medicine and delivering babies. She also flies in to remote Nunavut villages to run clinics for the largely Inuit population. But last year, Madeleine found herself on the receiving end of medicine. During an idyllic day of swimming at a Quebec cottage, her 11-year-old son Jayko (above) became seriously ill and was later diagnosed with a brain bleed. Jayko had four surgeries to repair a life-threatening aneurysm in his brain, but the repair caused him to be paralyzed on his right side. “That was the hardest thing that’s ever happened to me,” Madeleine says, noting that her own father died of a stroke when she was nine. After being treated at the Children’s Hospital of Eastern Ontario, Jayko came to Holland Bloorview for two months of rehab.

BLOOM: What was it like to be a mother and a doctor in this situation?

Madeleine Cole:
Most hospitals in Canada are designed for acute-care, and what I learned more than anything else was how hard it is to get care once the child is over the original injury. I had to do a lot of work as a parent to advocate for stroke rehab, because I learned there’s a huge difference between the rehab offered to adults with stroke, and what we offer to children.

BLOOM: Can you give an example?

Madeleine Cole:
Where an adult in Ottawa would receive six weeks as an inpatient with focused rehab, including weekend physio, there was a push to discharge us a week after Jayko’s aneurysm was repaired. As outpatients, we would only receive very limited occupational, physio and speech therapy on certain weekdays. That was inadequate for a child who’d had a massive stroke and complete one-sided paralysis, and it was vastly different from what an adult in Ottawa would have received.

BLOOM: So how did you get to Holland Bloorview?

Madeleine Cole:
It was only because I did a lot of homework and put my advocacy in writing. Initially we were told he was too well for your program, that he had recovered too much.

While we have worked with many wonderful individuals in the system, the system itself often fails kids. In so many ways, geography is destiny. If you compare rehab therapy in Ottawa to Nunavut, it’s 10-fold better. But if you compare rehab at Holland Bloorview to Ottawa, at a program level, it felt a thousand times better. In the letters I wrote, I said I’m fighting for my kid, but I’m also fighting for all kids.

Something has to change with rehab for kids after stroke. I'm not sure when or how, but I'd like to do something about that. Maybe there's a role for me to write an article about that in the Canadian Medical Association Journal.

It's part of a physician's job to advocate for a better and more equitable health-care system. It was odd to find myself doing it for my own child. For families with lower health literacy and less social capital it would be so much harder to navigate the system.

BLOOM: It sounds like being a doctor in your situation was a great advantage.

Madeleine Cole:
I think overall it has been, partly because with knowledge you can be a better advocate. But it was also helpful to me to understand the medicine and science and biology of what was going on, and to know the systems. That was good, because as a parent, you are the case manager. On the other hand, parents who don’t have a medical background might not quite 'get' how serious their child’s situation is.

BLOOM: Because you understand exactly what doctors are talking about, whereas a lay person may not?

Madeleine Cole:
Yes. And I think sometimes not knowing for a parent can be protective, as long as your child is getting good care.

One of the hardest things about brain injury for caregivers in the health system is to balance honesty and not create false hope in parents, but to temper that with the fact that this is not mathematics—it’s not two plus two is four. Despite MRIs and imaging, you can’t entirely know what the endpoint of rehab will be. 

Whoever came up with your branding about possibilities is brilliant. When things are unpredictable, it's not helpful to shut doors.

One of the hardest things for me as a parent is not knowing how much to push rehab—whether it’s occupational therapy or physio, formal or informal—especially in a child, like all children, who needs to enjoy life.

BLOOM: How is Jayko doing now?

Madeleine Cole:
We’re a year out in rehab and recovery and physically he can run, he can swim and gym is his favourite subject. He became left-handed, and went to hand camp at Holland Bloorview to continue to regain his right hand abilities, which was excellent.

At the same time, I have to allow myself to be sad, because he was a very, very artistic child before, and that’s difficult with the change in his fine-motor skills [cries].

In many ways he’s the same as he was—just a toned down or calmer version. He was an extreme extrovert, and he’s still really socially capable, and everyone likes him. There are cognitive changes that are subtle to people who don’t know him and largely invisible. School has become a challenge and I'm adjusting to it all. On endless levels, he’s completely wonderful and happy and I’m so grateful for that.

BLOOM: It sounds like you’re torn between being grateful for how well he’s doing and grieving what has happened.

Madeleine Cole:
I think I find it hard to balance being positive and present-focused, and allowing myself to be sad to the losses.

I think there’s a combination of true grief for the loss of some of the things that probably won’t come back, but also trauma from the acute-care experience.

Everyone was shocked at how well I coped when we were at CHEO. We had no control, apart from advocating, and our child could die anytime—that was a real possibility. It was just letting go, and going day by day.

His acute-care was excellent, especially the intensive care.

But I wish acute-care hospitals had established peer support from other families, or concrete outreach to parents through a handout that says 'This is going to be very difficult for your whole family, try not to forget your child's siblings.' Or a phone number you can call if you need professional help. I think there's a lot to be said for learning from other families' experiences—in person and through stuff that they've written.

We had family in Ottawa and a huge circle of support—people who could bring us food or spend time sitting with our child, so we could get out or take our other kids places. I thought, over and over, about all the Inuit families we saw at CHEO who were a million miles from home, with no extended family. My partner and kids are Inuit.

I know that the experience of grief and trauma isn’t linear, and I tell myself it’s a positive thing that I’m able to cry now and be sad. I know the general pattern of families after these things should be in the direction of getting better, but there are always waves, and ups and downs.

BLOOM: What helped you cope when you were inpatients at Holland Bloorview?

Madeleine Cole:
I really benefited from the green space, the ravine, and Sunnybrook Park. I brought my running stuff, and I’d run in the ravine. Being able to exercise and be in the forest.

The Family Resource Centre was good—and even that it’s called that is pretty powerful. I wish in acute-care that there was something that says ‘A child’s illness is a family’s illness,’ to validate how difficult it is for the whole family. I took out a bunch of books and read things in your Family Resource Centre. I also appreciated the mindfulness group and Anne Maria was an excellent social worker and support.

Art therapy for kids and parents, and visiting musicians, and hospital clowns were part of the incredibly good care that we experienced.

Over the long term, I’ve found arts and books and music help you cope. Songs that I often listen to that help me feel better, but also let me be sad, are Crying by Madison Violet and Bruce Cockburn’s Song 40 Years In The Wilderness. There’s also a super cool woman from Winnipeg called Iskwe, and her songs Healers and Soldier are quite awesome.

BLOOM: What was most challenging during your inpatient stay?

Madeleine Cole:
One of the things I learned, and that ties in to being a better doctor, is how incredibly important, and disrupted, sleep is when you’re in a hospital setting. Because you’re sharing a room, there’s a lot of beeping and noise at night, and sleep wasn’t great. Because I have family who live in Toronto, we were able to switch to the brain injury day program after a month, and sleep at their house. To be able to sleep in a normal house, with extended family, was wonderful.

BLOOM: How did Jayko’s siblings cope?

Madeleine Cole:
I knew this wasn’t going to be a short-time problem, so after Jayko became ill, we moved to Ottawa. It might have been forever, we didn't know.

Many families in Nunavut couldn’t do that. They’d have to leave their children with a grandparent. I was able to figure out schooling for my other kids in Ottawa, and the schools were supportive and helpful.

Jayko’s siblings coped incredibly well. I forced each of them to see a psychologist, or a child life specialist, once. Today, they’re really adjusting, and not worried and not sad. They talk about how Jayko is fine and happy. I’ll occasionally say ‘Don’t you see how he’s different?’ And they’ll say ‘Yea, he’s different, but he’s fine.’

BLOOM: Did Jayko ever ask why this happened to him?

Madeleine Cole:
Yes, he did. But he knows that there’s nothing that he did, or that we did, to cause it. It was just bad luck—that some people are born with things different in their blood vessels. He knows that they were able to put some glue in his aneurysm, and close off that blood vessel. His neurosurgeon was great at showing him MRIs and cat scans and explaining things.

BLOOM: If you had to give three pieces of advice for other parents in a similar situation, what would they be?

Madeleine Cole:
First, let yourself be sad sometimes. Second, actively look around for positive things—or beauty or goodness—every day. And as much as it may be difficult, try not to neglect your other kids.

BLOOM: What happens to families who have kids with significant disabilities in Nunavut?

Madeleine Cole:
There's a real lack of services. When you have only two speech therapists for the whole eastern Arctic, they might have a visit to your community twice a year. There are no sidewalks here and no public transportation. Iqaluit is not friendly to people in wheelchairs. If I had a child with high needs, I would have to leave the North, even though I would be super sad about it.

On a positive note, I have found rural and remote communities to be more accepting and inclusive of people with disabilities. Nunavummi Disabilities Makinnasuaqtiit Society is one resource to families in Nunavut living with disability.

BLOOM: Are there ways in which you approach things as a doctor differently now?

Madeleine Cole: When it feels right, I share some of what I've gone through as a parent in the last year. I know that my ability to empathize with patients has deepened through many experiences, such as miscarriage, birth, death and illness and disability in loved ones. Having been there myself I hope makes me a better physician at some level. I hope I can be a better ally and advocate to families living with disability.

Monday, October 22, 2018

'My Beijing' is about the adventures of a girl and her grandfather

By Louise Kinross

My Beijing: Four Stories of Everyday Wonder is a gorgeous watercolour children's book by Nie Jun that was released in September.

According to Kirkus Reviews: "A young Chinese girl and her grandpa navigate life's challenges and joys in a small neighbourhood of Beijing. In this graphic-short story collection, the author introduces readers to Yu'er, a girl with an unspecified physical disability that limits her mobility, and her loving grandfather.

The first story opens with her dream of becoming a champion swimmer and a belief strong enough to carry her above her naysayers. From there, readers meet a boy who helps her fight off bullies, encounter the fantastical properties of an old mailbox, and finish by witnessing Yu'er's reconciliation with a grumpy neighbour. Whimsical and sweet, this will remind readers of animated movies such as My Neighbour Totoro and Kiki's Delivery Service."

BLOOM reached out to the publisher about getting an interview with the author. In the meantime, enjoy these images.

Friday, October 12, 2018

My daughter is not an animal at the zoo

By Christina Herbers

We saw pandas! We saw lemurs! We saw bears and zebras and hippos.

We were just a family visiting the zoo.

And then we heard it: “Mom, I don’t like her face.” And, “Dad, what is that face?” And we saw you shooing your kids away from us, as if we were somehow contagious. And oh, the staring!

Yep, this still happens to us. In fact, it happened on our summer family trip to the Calgary zoo.

On a brighter note, there was an older man who came up to my husband and shook his hand. He told him that the umbrella that we use to shade my daughter Jaina’s eyes from the sun had shifted, and that her eyes were in the sun. To him, I say thank you. Thank you for not being afraid of us. Thank you for seeing us. Thank you for holding a door open for us. Thank you for teaching your kids and grandkids that it’s okay to talk to us! 

Questions are a natural part of human behaviour. So maybe it’s not your children's questions that are the problem, but that you don't want to hear the answers?

How can your child know the answer to “what is that face?” if you don't ask me? If you ask, I will tell you about the car accident we were in when I was pregnant with Jaina. She isn't able to move her face that well because of her brain injury. She isn't able to smile. She isn't able to close her mouth. She suffered from a brain injury before she was born.

She has always been this way. 

She is also mellow and calm and quiet.

Talking about why my daughter is different from the rest of us may be natural for your kids, but please know that we hear you. Respect us.

Teach your kids that we are all different. Different colours, sizes, genders, sexual orientations, ages, beliefs and abilities. Teach your kids that it’s okay to be different. I can’t think of any two people who are exactly the same. Can you? Even the pairs of identical twins that I know who look the same have their own individual personalities.

Please don’t treat my daughter like a caged animal at the zoo. Don’t stare and comment and point and judge. Talk to us. Ask your questions, and take the time to listen to our answers.

Let’s work on seeing each other for who we really are. Because in the end, aren’t we all just people, trying to make it through this journey called life?

Share your thoughts below. I’d love to hear from you!

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Tuesday, October 9, 2018

Weight 'talks' leave autistic youth feeling blamed, shamed

By Louise Kinross

Obesity in children is one of the most serious public health challenges according to the World Health Organization. Children with autism are more likely to have higher weights because they’re often less active, can have unusual eating patterns, and may take medication that causes significant weight gain.

The literature encourages doctors to talk to children about the risk of unhealthy weight, but to date there’s been no research on how to do this without harming a child’s self-esteem. A new study in the journal Autism is the first to ask autistic youth themselves what it’s like to be on the receiving end of clinic talks about their weight.

Researchers interviewed eight youth seen at Holland Bloorview’s psychopharmacology clinic who take atypical antipsychotics to treat irritability and aggression. These drugs can cause a pound of weight gain a week, probably because they cause insulin resistance.

Most of the children aged 10 to 18 were interviewed in their homes after receiving a social story that explained who the researcher was, and what to expect from the interview. Patrick Jachrya was the lead author on the paper, which comes from a research program headed by senior scientist Amy McPherson. We talked with Amy.

BLOOM: Why was there a need for this study?

Amy McPherson:
This study came about after a few years of Evdokia Anagnostou and I talking in the coffee lines at Holland Bloorview about the work I do on weight in kids with disabilities.

Evdokia, who co-runs our Autism Research Centre, felt my work was much needed in working with children with autism, especially those she sees in the psychopharmacology clinic. One of the side effects of the drugs these children are on is considerable weight gain. Evdokia was having conversations with children and families about this and felt she didn’t have the training or support to know how to approach these talks.

BLOOM: What were the key results?

Amy McPherson:
Generally the kids found weight discussions very anxiety provoking. They were very nervous about having these conversations, especially if the topic came out of the blue and they weren’t expecting it. Trust was an important part of a relationship to have these discussions without distress.

Children had often seen many health professionals before coming to Holland Bloorview. Unfortunately, all participants described having experienced weight stigma from clinicians (who very likely didn’t intend it). They said they felt the stigma, and it made them afraid to talk about their weight because they were expecting to be made to feel very badly about it.

BLOOM: How does weight stigma in the wider world influence these talks?

Amy McPherson:
It’s fair to say that the youth had internalized the societal message that smaller bodies are better and desirable and healthy. This had often been reinforced at home by their parents, and also by their doctors and nurses, who they see quite regularly. That’s the world we live in. There was some evidence that they had started to perseverate on losing weight, and that it became a preoccupation.

BLOOM: To what did the doctors attribute their weight gain?

Amy McPherson:
We know that many doctors and nurses assume that kids are eating too much and not exercising—even though medication likely has the biggest effect. Children were made to feel lazy and blamed. They feel like they’ve failed, because they’re being compared to typical weight charts. Families might be told ‘your kid is just off the charts.’

BLOOM: Even though those charts aren’t made to reflect weight gain you would expect as a drug side effect?

Amy McPherson:
Yes. It’s viewed as a personal failure and within the control of the individual. Even though we know that weight is affected by so many things beyond the individual.

BLOOM: Some of the participants described professionals scolding them and trying to scare them. Why doesn’t that approach work?

Amy McPherson:
How long have you got? We know many health-care professionals think that they can shock people into losing weight. The science tells us that this approach doesn’t lead to weight loss.

BLOOM: What does it lead to?

Amy McPherson:
Weight gain. It can increase poor eating habits and overeating and binge-eating. And when children feel blamed and shamed, they don’t feel like going to the gym and working out. They avoid people. It also works on the stress hormone circuit, so that can lead to weight gain. Blame and shame have absolutely the opposite effect of what health professionals intend.

BLOOM: It struck me that the youth described incredible anxiety about their weight, and especially if they didn’t realize the doctor was going to bring it up.

Amy McPherson:
Kids with autism often feel quite comforted by routine and knowing exactly what’s going to happen, so this is a particular population that may benefit from a more structured approach to talking about weight.

BLOOM: How would that look?

Amy McPherson:
The number one question is to ask permission. ‘Is it okay if we talk about your weight today?’ Or even better, something like ‘Is it okay if we talk about how you can stay healthy and energized?
 If they say no, you can ask if it’s okay to talk to their mom about it. By focusing on growth and health, instead of weight, clinicians can make it a regular part of discussion and then it’s expected, and it takes the stigma out of it.

BLOOM: It was fascinating that the youth said it made them angry that they perceived doctors and nurses as trying to change them.

Amy McPherson:
We’re always trying to fix and change. One of my favourite lines is when clinicians say: ‘All you have to do is this…’ By taking that approach we’re putting the sole responsibility onto the individual, and not recognizing the many uncontrollable factors that lead to higher weight. We don’t know how to treat childhood obesity generally, so we’re often very unrealistic about what we’re asking children with disabilities to do, given the complexity of their lives.

BLOOM: Yes, if losing weight was a simple matter, there wouldn’t be an industry making billions of dollars off it.

Amy McPherson:
We’re often asking families to fundamentally change how they function and not recognizing what a huge thing that is.

BLOOM: I guess in many cases families feel that the entire family has to change their eating habits?

Amy McPherson:
Yes. While promoting healthy habits across the family isn’t necessarily a bad thing, with children with autism, food is often used for good behaviour. So if a family has found a way to manage behaviour so that everyone can be happy, we’re asking a lot to take that away from them.

Families feel profoundly guilty that they’ve given their approval for their kid to go on medications that lead to huge weight gain. And to be fair, heath professionals often have a lot of moral distress that they prescribe these drugs. Unfortunately, they’re often the only thing that’s reduced a child’s self-harming and enabled them to function, for example, to go to school.

BLOOM: So there isn’t really an alternative. Youth in your study said they felt negative when professionals used the words fat, obese and overweight to describe them. Interestingly, they said when language like that was used, they immediately tuned out what the person was saying.

Amy McPherson:
We’ve done quite a lot of work on language in our interactive casebook on how to have conversations with children about weight and health. Phrases like higher weight and bigger body, which are purely descriptive, may be helpful. But there isn’t one word that you use with everyone. Clinicians need to talk to families about terms they find acceptable.

BLOOM: In what way did the youth feel clinicians stigmatized them?

Amy McPherson:
By making it seem like a personal failing, and the perceived assumption that they were being lazy, eating bad food and not exercising. This was upsetting given the huge role of medication in their higher weights.

BLOOM: These medications were causing dozens of pounds of weight gain, right? Now just a few pounds?

Amy McPherson:
Yes, for some kids it could be an increase of 20 to 30 pounds. There are risks associated with higher weights: they can cause a metabolic syndrome that’s a precursor to chronic conditions like Type 2 diabetes or heart conditions. But the discussion can’t centre just around those extreme cases. People of many body sizes can be healthy.

BLOOM: How did the clinicians usually tell kids they could lose weight?

Amy McPherson:
Eat less, move more. All you have to do is…

BLOOM: The study talked about how these children became obsessed with their higher weights, and this made them feel bad about their bodies.

Amy McPherson:
Many had huge self-esteem issues. They felt they had to achieve a perfect weight. They knew it would please people if they lost the weight, but they couldn’t do it.

BLOOM: What advice can you give health professionals on how to approach this?

Amy McPherson:
In our casebook, we list a number of sentence starters that clinicians can try out. Instead of talking about a child’s ideal weight on the Body Mass Index (BMI) chart, they can talk about a child’s best weight—which is the weight a child is at when they’re living a healthy life that they truly enjoy. They need to know that there are many ways of being healthy.

BLOOM: What are next steps for the research?

Amy McPherson:
We’re using the casebook with our autism clinicians here and asking for their feedback on how they’re using it in their clinical practice. In the future, we’ll do a broader implementation study involving a number of different children’s clinics.

A related study in Autism Research includes interviews with the same youth, as well as their parents and health professionals. Notably, professionals said they didn’t have sufficient training to feel confident in identifying and addressing higher weights in children with autism.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.