'I saw resilience,' summer research student says

Masha Koroleva is a fourth year psychology student at York University. This summer she was a research student in the Bloorview Research Institute in the Ward Family Summer Student Program. Masha’s own experience with illness that left her bedridden sparked her interest in working as a clinical psychologist with children who may be marginalized by disability or chronic
health conditions.

BLOOM: Tell us about your work in the Bloorview Research Institute?

Masha Koroleva: I worked on a number of research projects with scientist Amy McPherson and postdoctoral fellow Ian Patton. The main project was looking at child disability and obesity and developing something called the Healthy Body Scorecard. It aims to be a holistic, comprehensive, but easy to use health-screening tool that looks at healthy lifestyle factors and behaviours in children with and without disabilities.

BLOOM: Why is this tool needed?

Masha Koroleva: The trend in health screening is to rely on body mass index, which is a ratio of height to weight. But that isn’t a very holistic way of understanding what could be contributing to someone’s weight and health issues. It’s more important to look at behaviours, lifestyle, environmental factors and to understand that someone’s health is a constellation of different contributing factors.

BLOOM: What did your work involve?

Masha Koroleva: I analyzed a subsection of a survey targeted to doctors, nurses and dietitians across the country. We wanted to understand what professionals are using as health screening practices for children with disabilities, what are the gaps, and if we were to develop the Healthy Body Scorecard, what would these professionals like to see in it.

BLOOM: What did you find?

Masha Koroleva: It confirmed that doctors, nurses and dietitians are primarily relying on body mass index as a health screening tool. But we know there are problems with using it as a sole indicator of health because a lot of kids with disabilities have very different body compositions. They can’t be compared to typical growth charts. The survey participants recognized these measures were inappropriate, but they didn’t have anything else that was easy to use.

BLOOM: What did the doctors want in a new score card?

Masha Koroleva: They were interested in three domains: child health behaviours and child health attitudes—not just what do you do, but how do kids think about health and what they know about healthy eating—and family lifestyle.

BLOOM: Why is weight a particular issue for children with disabilities?

Masha Koroleva: Children with disabilities are less likely to participate in sports, more likely to have a sedentary lifestyle and more likely to eat high-calorie food. Sometimes there are also genetic factors.

BLOOM: What was it like working as a research student here?

Masha Koroleva: It was extremely exciting. Disability is something I’m very interested in. I’m very interested in people’s illness experiences and the idea of resilience and how people find themselves in very challenging circumstances and the ways they come up with to adapt to them.

I got a chance to work with some inpatients interviewing them about health-related programs like Busy Bodies. I got to write a paper on understanding current health practitioner screening practices based on our survey. At the Ward Family Day I talked about my research, made a poster, and gave a presentation.

There were a slew of lunch-and-learns that exposed me to different disciplines and to learning about different types of disability. That was eye-opening in understanding the uniqueness of every person’s challenge, and how for granted we take our own abilities.

BLOOM: What did you get from your work with children?

Masha Koroleva: Small, little interactions I had showed me the incredible power and resilience of people and the ability of every child to surprise you. It wasn’t necessarily this big heroic thing, but you’d see these little resiliences. I asked a boy in the spina bifida clinic what he was doing for the summer and even though it seemed that physically he would face a lot of challenges, he said he was taking a course in history and editing his own movies and soundtracks. I saw resilience in very simple, everyday actions.

BLOOM: What did you learn from parents?

Masha Koroleva: One of the interesting things parents said about Busy Bodies—which is a program focused on teaching kids about healthy lifestyles and nutrition and getting out to play sports and do new activities—is they all wished the program went on all summer, not just for one week of camp. They felt their children could only learn about healthy lifestyles if it became a given, something that was part of their routine everyday over time. They wished these programs were more available.

BLOOM: What was it like working at Holland Bloorview?

Masha Koroleva: I don’t think there’s any place like Bloorview that would have given me such a broad scope of what is possible and what exists. Everyone here seems so highly motivated and there’s a lot of love and community. It was great to be able to tap into that.

Also, just the way the physical space of the building is designed is very conducive to how it functions. The first thing you notice is the physical structure and that sets the tone for how the internal aspects of Bloorview work: the amount of light, how well thought-out and accessible the spaces are, the proportions of the rooms and the details of the space with so much green around us. I think that’s good for the soul and it helps the mind function.

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Be gone joy-thief

I was elated when I read this blog post by Anchel Krishna at Today's Parent. It's about her daughter, who has challenges speaking, having a "real conversation" with words.

When asked about her day at school, Anchel's daughter offers up what she considers the most salient piece of information: "Cried a little bit," she tells her mom and grandmother, ignoring their specific questions. "She had a message, she had something she wanted to tell me... and she told me," Anchel writes.

I also felt heartache when I read Anchel's post. I will never hear my son say words like that, I thought.

Remember that old saying: Comparison is the thief of joy (Theodore Roosevelt)? I couldn't help comparing my son's abilities with Anchel's daughter's and feeling that twinge of regret and loss.

But then today, when my son got off the bus, he presented me with his own version of: "Cried a little bit."

In sign, he told me "I had a bad day and I couldn't stop blowing my nose (he does this when anxious). I'm sorry."

Like Anchel's daughter, my son was sharing what he wanted to tell me. And I had to think: Does it matter if it's not in audible words?

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Connecting the dots

On the weekend I was in Chapter's and noticed this memoir on a prominent display: I'm Sorry You Feel That Way: The Astonishing but True Story of a Daughter, Sister, xxxx, Wife, Mother and Friend to Man and Dog.

Entertainment Weekly called it a must-read and described it as "nostalgic, sad, and pee-in-your-pants funny." A review in the Los Angeles Times says "it's hard to recall another collection of essays, or a memoir, with more natural charm."

I turned to the back cover and read this:

Here's a quick way to determine if you're going to enjoy Diana Joseph's essay collection, I'm Sorry You Feel That Way. Read the following:

"Yesterday my son was turning the pages in his eighth-grade yearbook so we could play a game I came up with called Guess Which Kids are Retarded. The boy thought the game was terrible, so cruel and so mean that I should have to pay a fine, I should have to pay him ten bucks every time I was wrong."

If you find that paragraph offensive, you will hate this book.

If you know you should find this paragraph offensive, but secretly find it hilarious, you should buy this book. Immediately.

Really? Let's imagine the author had replaced "retarded kids" with another marginalized group: gays, for example, or immigrants, or people with physical disabilities? Would that line still be considered funny? This book was published in 2010. Has humour evolved so little that "retarded kids" must be relied on as the brunt of jokes between mother and son?

In the past, I would have just put the book down and forgotten it.

But instead, I couldn't help remembering a conversation I had with a Toronto mother of a young woman with intellectual disability last week. She was telling me about her daughter's efforts to find work. Mother and daughter had visited a case worker at an employment support program. They were referred to agencies who could help the daughter find work.

These agencies place people in positions at well-known retail, grocery and restaurant chains.

But guess what's on the job description at every single one? Cleaning the bathroom. Yes, cleaning the bathroom is on ALL job descriptions made available to people with intellectual disabilities. The mother and daughter were forewarned.

Is there some reason why people with intellectual disabilities are better at cleaning toilets than the average person? 

Yes, I guess you could say someone has to clean the bathroom, and students and young adults who are looking for work have to be willing to do anything.

But what does it tell you about how the business world, our government and our culture view people with intellectual disabilities when the ONLY job available to them involves cleaning human waste?

And is the message at the employment support program any different than the one the memoirist above gave her son—the demeaning one that won her rave reviews? Even Library Journal calls her "trenchantly funny." 

The employment support program explained to mother and daughter that whenever a person is placed in a job, the agency that did the placement receives a grant from the government. "Person with intellectual disability cleaning bathrooms? Job well done!"

Sometimes it's really depressing to sit at my desk, reading news stories on disability and hearing from families on the frontlines. 

Sometimes I'm tired of connecting the dots in a system that blatantly discriminates against people like my son, then serves it up as sanctioned literary comedy.

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Need for speed

Riding an ATV on his own at camp this summer was a thrill for Ben.

So I wasn't surprised when a message came home from his co-op placement that he'd made a beeline for an electric golf cart that students aren't allowed to drive.

Ben is doing a co-op at Variety Village, a sports club adapted for people with disabilities. He goes every other day with an assistant. They're still figuring out his program but the other day he was in charge of taking membership cards and handing out basketballs.

Apparently a new electric golf cart showed up in the sports equipment room and Ben thought it would be the perfect ride. But that's not in the student job description.

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Happy Friday!

BLOOM was ranked 33 out of 150 top non-profit blogs! Thank you to all of our readers and contributors.

Just a couple of items today.

Has anyone read The Reason I Jump? It's a small book in which a Japanese teen with autism who can't speak answers questions about his autism. To write the book the author painstakingly pointed to an alphabet grid to spell out his words and then sentences. I've been eagerly anticipating this book ever since reading about how it was edited by David Mitchell, author of Cloud Atlas, and translated from Japanese in the first place by Mitchell's wife KA Yoshida. Mitchell and his wife have a son with autism.

However, when I finally had it in my Kobo, I was disappointed by the editing. I wanted to read a very raw version of what author Naoki Higashida wrote at age 13. Instead, the book was polished and seemed to be full of British-isms, British sayings and manners of speaking that didn't ring true as the way a Japanese teen would speak. 

Here's what a reviewer in The New York Times had to say:

The English edition is being treated more as a fragile objet de consciousness than as a book, as though criticism or analysis would be vulgar. Unfortunately, it’s impossible to sort out what is Higashida here and what is Mitchell. The two have never met in person, and Higashida had almost no involvement in the English edition. Mitchell has said that Yoshida “did the heavy lifting” from the Japanese, and that he “provided the stylistic icing on the cake.”

“The Reason I Jump” may raise questions, as many books have, about the nature of autism. But it raises questions about translation as well — that “icing.” Translation, at its best, is a dance between an objective search for equivalent language and an intuitive grasp of the author’s intent, which may have nothing to do with the translator’s point of view. The parents of an autistic child may not be the best translators for a book by an autistic child.   Would love to hear others' impressions.  

A couple of weeks ago I went to see the movie In A World. I'd read so many good things about it and writer/director Lake Bell, who stars as the vocal coach who wants to break into the male-dominated world of movie-trailer voice-overs. Unfortunately the first scene includes a running joke using the word "retarded." There weren't a lot of people in the theatre with me, but they just ROARED with laughter, every time it was used.

And I felt like crap.

I really don't get it. This intelligent, progressive, young woman whose message is about women not being demeaned or underestimated starts the movie with putdowns about someone sounding "retarded?"

On a positive note, we had a wonderful turnout for our BLOOM speaker night with Arthur Fleischmann, author of Carly's Voice: Breaking Through Autism. And a special treat was that I got to meet a dad who had just adopted a boy with autism. I'm hoping he will write us a piece about how he and his partner decided to adopt a child with a disability.

Finally, My Silly Feet is a fun picture book about a girl called Gabby who has spina bifida. She wants to run in a school race but is afraid others will laugh at her because her feet won't run as fast as other kids'. The book is written by Gabby's mom and available here and in the Holland Bloorview library.

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Can storytelling improve care?

Today I'm submitting a research proposal for ethics review on a narrative training group for nurses on one of Holland Bloorview's inpatient units.

This stems from what I've been learning about narrative medicine and the power of storytelling to humanize health care.

The bi-weekly group will have nurses write a story or draw a comic about their emotional responses to work with clients and families and about how they imagine clinical situations from different perspectives, then share and discuss their work. It will aid them in processing the emotional side of working with children who are in rehab following painful surgeries or life-changing trauma.

The goal is to increase empathy for clients and families and the nurses themselves; to foster teamwork; and to build resilience to compassion fatigue, which is the natural stress that arises from caring for people who are in pain or traumatized.

One of the researchers is Shelley Wall, the illustrator in residence at the University of Toronto's medical school. She'll be coaching participants in how to tell a story through a simple three-panel comic. As part of a study recruitment poster, she created avatars for the researchers. What do you think of mine (above)?

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Henry starts school

Columbia University professor Rachel Adams is the author of the just released Raising Henry: A Memoir of Motherhood, Disability, and Discovery about life with her son Henry (above), who has Down syndrome. Here she talks about her hopes and fears as Henry starts kindergarten.

When the box of shirts arrived, each sized "XS" and embossed with the logo of our son’s new school, my eyes teared with happiness as I pictured him getting dressed for his first day of kindergarten. Starting kindergarten is a huge milestone for any child, but for my son Henry, who has Down syndrome, it is an especially momentous occasion.

My husband likes to say that we’re sending Henry to the best school for a person with Down syndrome anywhere on the planet, ever in all of human history. When he says this, he’s being only slightly hyperbolic. The bar is set pretty low. It was long believed that people with Down syndrome couldn’t learn anything beyond the most rudimentary forms of self-care. As children, they were often sent to institutions where, absent proper medical care, teaching, and intellectual stimulation, they tended to live up to predictions of their limited capacities. Until the passage of the landmark Individuals with Disabilities Education Act (and its precursor, the Education for All Handicapped Children Act), many states barred children with disabilities from public school. We can’t imagine a better capstone to this sad history than sending our son to a school that specializes in inclusive education, using individualized programs to integrate children with many different learning styles and capabilities.

Excited as I was, those school uniforms also filled me with anxiety. We’ve already tried inclusive education and we know how hard it can be. In his first year of daycare, Henry was assigned to a mixed age group with children anywhere from 6 months to 2 ½ years. Because everyone was at a different developmental stage, it was hard to tell who was delayed. He spent much of his day reading books, dressing up, cooking, going on walks, and doing art projects. Most of the time, we could enjoy the sense that Henry was just a typical child, like the others in his class.

But then there were moments when I was reminded of his disability, sometimes painfully so. When Henry first tried to play at a sensory table filled with sand, I was dismayed to see him lean over at a 90-degree angle, his face just inches from the pile. The other kids seemed to know intuitively how to stand upright as they dug and poured. Another bad moment came on curriculum night. The teachers put together a lovely film showing us what our children did all day. I was pleased to see clips of Henry reading, playing doctor, and stacking blocks along with his classmates. But the soundtrack made my heart sink. The other children could be heard babbling and talking, while the only sound Henry made was a loud, incessant “ah.” I left quickly after the film, unable to mingle with parents whose biggest worry was that their kids didn’t want to nap or eat green vegetables.

With time, Henry’s differences became more apparent. When he moved to the preschool room, the age range was narrower and his delays more noticeable. Unlike most of his peers, Henry still had impulsive behaviors like eating Play Dough and throwing toys. By then he could speak a few words, but nothing like the torrent of language I heard from some of his classmates. He loved the other children, and loved being part of a group, but he had troubling knowing how to join in. None of this surprised his teachers, who took it all in stride. But I still had my moments: the jolt of sadness when I saw the quotes from students who could talk well enough to describe how it felt to plant a seed or my dismay when I overheard the other parents arranging play dates for their children.

The challenges of inclusion weren’t just about my anxieties. The school that had been so welcoming of Henry’s differences also had a strict age limit, and we were told that he would need to graduate along with his classmates regardless of where he was developmentally. Knowing that Henry was not at all ready for kindergarten last year, we moved him to a new school, where he spent a year in a special-ed classroom.

Our experiences at daycare drove home the real benefits, but also the difficulties, of inclusive education. In its truest form, inclusion doesn’t mean everybody can, or will, be expected to do the same things. It’s not about dumping children with disabilities into a typical classroom without proper support. Inclusion requires an environment designed to accommodate children of many different backgrounds and abilities, and teachers who recognize the learning opportunities provided by those differences. Research has shown that everyone benefits from programs that are creative and flexible enough to accommodate disabled and nondisabled students. Kids with disabilities learn from the modeling of their nondisabled peers, while typical students are taught about patience, cooperation, and sensitivity toward others. The point isn’t just that disabled and non-disabled students can educate one another. All children learn in different ways, even those who don’t have disabilities or Individualized Education Plans. Everybody stands to gain from an inclusive classroom where the curriculum is designed to accommodate varied learning styles and abilities.

Inclusion is also hard work, and it isn’t the best option for everyone. When disabled children learn alongside typical peers, their differences become more visible than in an environment where everybody has a diagnosis of one kind or another. As they get older, and the academic and social challenges increase, some kids with disabilities find inclusion stressful and discouraging. Many students who were successfully included in elementary school end up transitioning to more specialized middle and high schools.

All of this was on my mind as I prepared for that first day of kindergarten. I worried about whether Henry would be able to keep up, how his teachers would manage his learning style and pace, and, most of all, whether he would make friends and be accepted by his peers. At the same time, I tried to remember that inclusion isn’t just about making a place for my disabled child. It’s also about what he has to contribute to his school community. Now that we've survived the first week, things seem to be going well and I'm feeling optimistic.

I’m eager to see how Henry's teachers respond to the challenges of modifying their curriculum to meet each child’s needs. I hope I’ll form bonds with other moms and dads around the many joys and struggles of parenting that have nothing to do with ability or disability. Most important, I look forward to seeing how Henry learns from his classmates, and how he teaches them, at a very formative age, the value of diversity that extends beyond gender and skin colour.

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