Bloom - Winter 2013

WINTER 2013

AROUND THE WORLD

STITCHED TOGETHER A sewing project changes the lives of Kenyan mothers of children with disabilities

A NEW LENS French geophysicist Xavier Le Pichon says empathy sets humans apart

ROLE MODEL For 16-year-old Emily, a ventilator and wheelchair are just accessories

TRAVEL TIPS Europe, here we come!

RESEARCH HITS Young people say a leaky body is ‘social death’ BLOOM ~ winter ~ 2013 ~ 1

WINTER 2013

BLOOM speakers Pencil in May 1 for a talk with former Olympian Silken Laumann on parenting a stepdaughter with autism! More details to come.

BLOOM is a how-to magazine on parenting children with disabilities.

BLOOM gives voice to the joys and challenges of special-needs parenting by combining firsthand family insights and the best professional advice.

We believe that every child blooms in his or her own unique way.

When: May 1, 7-9 p.m.

Where: Family Resource Centre, Holland Bloorview Please RSVP at 416-425-6220 ext. 6303 or e-mail ndyke@hollandbloorview.ca. Limited playroom spots at ext. 3438.

Come visit us at Parent Voices on Facebook!

This is a place for parents of children with disabilities to ask questions, share practical information, discuss ideas and support each other.

BLOOM is published two times annually and mailed to Holland Bloorview families and parents and professionals who ask to be on our list.

Hop onto Facebook and type Parent Voices at Holland Bloorview in the search. Come ‘like’ us!

CONTRIBUTORS PUBLISHED BY: Holland Bloorview Kids Rehabilitation Hospital WRITER AND EDITOR: Louise Kinross DESIGNER: Claire Falcon Restituto PRINTER: Continental Press

Your child’s e-health record

HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL Holland Bloorview is Canada’s largest children’s rehabilitation hospital.

Our vision is to create a world of possibility for kids with disability.

We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life.

Client and Family Relations

DISCLAIMER Articles in BLOOM are not a substitute for professional medical advice. Resources listed in BLOOM do not signify endorsement by Holland Bloorview. Where appropriate, please consult your physician.

CONTACT US EMAIL: lkinross@hollandbloorview.ca TEL: 416.424.3866 or 800.363.2440 FAX: 416.425.9332 WARMLINE: 1-877-463-0365 MAIL: Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto, ON M4G 1R8

Outpatient clinicians at Holland Bloorview are recording treatments online­—replacing handwritten files and ensuring everyone who works with your child has real-time access to information. This electronic system has already been implemented for inpatients.

Have a question, concern or compliment about your child’s care at Holland Bloorview? Call 416-753-6084 or email feedback@hollandbloorview.ca.

Bookshelf Far From The Tree, Andrew Solomon, 2012.

A fascinating book about how difference transforms families and unites us. One of The New York Times’ Top 10 books of 2012.

The Boys’ and Girls’ Guides to Growing Up, Terri Couwenhoven, 2012. Although targeted to youth with intellectual disabilities, these books deliver the facts any pre-teen or teen needs to know.

All available in our library: 416-425-6220, ext. 3517.

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inthisissue

On the cover Students at Malaika Kids, a special-needs school in Maai Mahiu, Kenya supported by a sewing project that employs the students’ mothers.

“Children with special needs are often considered cursed and continue to be systematically excluded from public schools,” says Martin Milimu, an occupational therapist. See how Malaika Kids is breaking barriers for disabled kids and their mothers on page 9. Photos by Chelsea Dee.

Features PARENT TALK

ROLE MODEL

06 A marathon mom’s toughest run

20 E mily’s advice: If it’s part of me ‘I learn to love it’

AROUND THE WORLD

TRAVEL TIPS

09 M ums sew together a new life for Kenya’s disabled kids

24 S eeing Europe from a wheelchair

13 C ast out because of her daughter’s disability, Joyce finds new life

TRAIL BLAZER

A NEW LENS

26 I n Mary-Ann’s ‘ark,’ diversity is welcome – in kids and animals

15 A positive weakness

RESEARCH HITS

18 The wheelchair upended

30 D o doctors grieve?

32 I ncontinence in kids: A toileting taboo 34 S cience roundup

Departments RESOURCES

FEEDBACK

02 S peakers, e-health news and bookshelf

05 Your letters and comments YOUR KIDS IN BLOOM

FROM THE EDITOR

35 P hoto gallery

04 E mpathy: Ancient bones suggest it’s in our DNA

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fromtheeditor

Empathy: Ancient bones suggest it’s in our DNA History is rife with dark stories of disability hatred.

That’s why recent archeological examples of prehistoric people who cared for children and adults with profound disabilities are so striking.

In December, The New York Times reported on the excavation of a skeleton of a man with profound disabilities at a 4,000-yearold burial site in Vietnam. Archeologists in the story point to at least 30 similar cases where people with significant disabilities were supported round-the-clock in early cultures.

So what response is more human? Are we more likely to attack people who are different or to value and nurture them as part of the community?

Xavier Le Pichon, the French geophysicist we interview on page 15, argues that empathy is our defining trait.

“I was very impressed by studies of skeletons of 100,000-year-old humans which demonstrated that these people took care of heavily handicapped people [for decades],” he says. “This is most remarkable as these people were nomad, hunter-gatherers who lived in groups of 20 to 25 people at most.”

Le Pichon says that social relationships woven around people with disabilities were more valued than a person’s productivity.

Following a similar line, Andrew Solomon, author of the new bestseller Far From The Tree, finds that difference in families is a uniting force.

Solomon explores the lives of parents raising children so different from themselves

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that they can appear alien: children who are disabled, musical prodigies, transgender or conceived in rape.

But despite challenges to adapt, Solomon’s narrative mirrors Le Pichon’s: in most cases, families become stronger. They dig deep, grow, become more humane, and value the journey.

Unfortunately, Solomon doesn’t find parents reaching out to support families whose children are stigmatized for different reasons.

Ironically, he writes, the parents of child prodigies didn’t want to be included in a book with families of severely-disabled children.

People with autism insisted that those with Down syndrome had lower intelligence than them, and deaf people didn’t want to be associated with people with schizophrenia.

I think Solomon has nailed the discrimination within the disability community and how it fractures all of our attempts to seek equality.

In an eloquent talk at The Toronto Reference Library he called on all marginalized groups to come together as one voice for social change.

“It’s all one battle,” he said. “If you take every [person] who experiences themselves as somehow different from the mainstream, that’s more people than in the mainstream. All of us should be addressing the questions and advocating together for a more just world.”

feedback FROM THE MAGAZINE, E-LETTER & BLOG The first emotion I thought I would feel when reading this post was sadness that my Kate would never attend such a lecture or a university...(Negative capability, Nov. 20). Then as I read, I felt a lightness of being because I have already started to recognize and learn that Kate embodies much of what you have written about —she is negative capability. She lives in that space of no judgment and embodies the phrase “living for the moment…” She has no preconceived notions of herself, where she is going, who she will be, how long she might be here with us… I am learning to set aside my expectations of what might or should happen and letting it happen, in life and medically. I think the most important take away of this post for me is: “It’s not possible to have compassion for the person in front of you if you’re being hard on yourself.”

Julie Drury, Ottawa If we value our children only by the pieces of paper they achieve then we are setting ourselves up for constant disappointment. Success should not be measured the same way for every child. I believe we can control this aspect of our lives with resounding success!

Anonymous, online What a fantastic magazine BLOOM is! I so wish it was being sold on our national newsstands here. Have you considered a UK outlet?

Melissa Mostyn-Thomas, Buckinghamshire, UK

As one that went through the medical mill long ago (1969-1978) with a complex neurological condition that eventually resulted in paralysis I can state walking is highly over-rated (Does pressure to walk prompt over-therapy?

Aug. 17). Yes, walking is the ideal, we humans were designed to be bipedal, but parents and therapists need to consider the long range implications of a single-minded goal of walking. A larger view must be taken and if wheelchair use offers more freedom and independence then I see no reason not to embrace this technology.

This is a very important topic (Answering your question on withdrawal of fluids in newborn, Oct. 29). How is an assessment made as to the child’s predicted disabilities anyway?

Do the personal values of the neonatologists challenge their ability to provide unbiased information to enable parents to make an informed decision? If the parents choose or ask to dehydrate their newborn, at what point do the rights of the child come into the question? As the child is legally a “person” after birth, should the agencies that protect children become involved? Consider the Canadian Medical Association Journal study that was published in 2011 based on 720 patients who suffered brain trauma and were placed on life support at one of six trauma centres across Canada. The authors found that the outcome was centre-dependent suggesting that the culture of the centre and its staff was a factor in the decision to withdraw treatment. They concluded: “We observed significant variation in mortality across centres.

Considering the high proportion of early deaths associated with the withdrawal of life-sustaining therapy and the limited accuracy of current prognostic indicators, caution should be used regarding early withdrawal of life-sustaining therapy following severe traumatic brain injury.” Could the same circumstance, whereby treatment is withdrawn before there is a reasonably accurate ability to assess brain damage, exist in the NICU?

William Peace, online

Barbara Farlow, Toronto

I’m very much behind the change (The Asperger’s/Autism debate, Oct. 4). Speaking as an aspie, and soon to be autistic, adult, I never saw much of a difference myself…

What I like about this change is now we’re all together as part of a continuum. I’m in a position to support and advocate on behalf of others like myself who may not have the resources to do as much for themselves as we can do together.

I’ve recently joined Autistic SelfAdvocacy Network and am setting up a Toronto chapter. I very much like their slogan “Nothing about us without us.” It speaks to the notion that autistics, and all people with disabilities, should be given the opportunity to speak for themselves, in whatever language and to whatever level of communication they are able.

Jason Nolan Director, Experiential Design and Gaming Environments Lab Ryerson University, Toronto

Comment on these letters or send your own to lkinross@hollandbloorview.ca BLOOM ~ winter ~ 2013 ~ 5

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parenttalk

A marathon mom’s toughest run When Julie Drury first began rushing her seriously-ill baby Kate to emergency—over and over again—she was convinced Kate had a treatable medical condition.

“I thought we’re going to push through this and together with her medical team figure out her condition and treat it and then she’ll be fine and a normal kid,” she says.

But at age four Kate was diagnosed with a degenerative mitochondrial disease.

Mitochondria are packets of enzymes found in every cell that generate energy. When they fail, cells die and organs eventually stop working.

At age five, Kate has profound hearing loss and severe, cyclical episodes of vomiting, pain and racing heart. She can’t produce red blood cells properly. Because of gaps in her development, she doesn’t understand her environment, which leads her to scream, refuse to cooperate, or run away. She can’t tell her mom what hurts when she’s in pain.

“I’ve realized that the only way to survive this and to keep my sanity is to carve out niches for myself where I can be strong,” Julie says.

So several mornings a week, Julie slips out of the house in the dark at 5:45 a.m. to run.

She’s completed three marathons since Kate was a toddler, and is preparing for her second Boston marathon.

“Running is something I control that’s mine.

It gives me something to focus on and give back to myself. As much as everything else is a

struggle, I need to show where I can be strong.

I needed something for me, to deal with the stress and emotion and I knew I had to be physically strong because caring for Kate takes a lot of stamina. I like to compete and I like to get out and work my legs and lungs. I run with a group of good friends so it’s also social.”

When Julie competes in marathons she wears her Mito Canada t-shirt “to connect with my daughter and raise awareness and funds.

Kate has a lot of pain and fatigue and brutally invasive tests and I want to share that a little bit. I want to feel what it feels like to have your muscles ache, to feel there’s nothing left in your body and you still have to live the day and get through the night. That’s what her disease does, it depletes her of energy.

There are days where she has to be carried everywhere and can’t even get out of the wagon.

“The last eight to 10 km of a marathon you’re pushing yourself to the limit. Your body starts to shut down. But when I feel like I want to walk I’ll think about Kate in the hospital and the hours and hours of vomiting and tests and doctors’ poking and prodding and I’ll think the least I can do is keep going and raise awareness.”

While Julie runs four mornings a week for just over an hour, her husband Brian gets the kids up. “I have to go first thing in the morning or I won’t go. My days are not my own because I

BLOOM ~ winter ~ 2013 ~ 7

never know how Kate will be doing medically or behaviourally, or how exhausted I’ll be.”

Her running friends “meet at my house and if my lights are on they know I’m coming. If the lights are off they know we had a bad night or are at the hospital. We go rain, shine or snow storm.”

She also takes one long two-to-three hour run on weekends. “If Brian has to work, I rely on babysitters. In terms of carving out the time, I haven’t found it a big issue. I may be gone for most of the morning but then as soon as I’m in the door I’m on Mom duty and Brian may go out to run some errands.”

In addition to giving her a challenge she can control, Julie says running keeps depression at bay. “When I’m not running and not taking care of myself that way, I start to feel low and more miserable. I know that darkness

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is there, and a way to stay away from it is to stay active, giving myself endorphins and getting rid of negative energy.”

Julie had to give up her job as a senior government policy advisor and recognized recently that her days “in Kate’s shadow” will be life-long.

“It’s not going to change, if anything it’s going to get worse because her disease is degenerative.

If I’m going to keep my sanity and any sense of self I have to hold on to those things that are important to me. For me it’s fitness. For another parent it could be something different.

Maybe it’s a Dad’s book club. Or blogging.”

You can follow Julie on her blog at Searching for solid footing: http://searchingforsolidfooting. com. For more on mitochondrial diseases, visit www.mitocanada.org.

aroundtheworld

Mums sew together a new life for Kenya’s disabled kids

BLOOM ~ winter ~ 2013 ~ 9

aroundtheworld A sewing project is changing the lives of two dozen Kenyan mothers of children with disabilities in Maai Mahiu, northwest of Nairobi. Malaika Mums, run by Comfort The Children International, makes and sells reusable cotton bags and coffee sleeves.

In addition to providing the mothers with a good wage, the income supports an onsite school with rehab services for their children. BLOOM asked Martin Milimu, an occupational therapist who works with the children, to tell us more.

BLOOM: What stigma is associated with disability in Kenya?

Martin Milimu: In Kenya, some cultural traditions hold that handicaps are a curse from God, shameful and reason to ostracize a child and his or her family. It is believed that the mother is a sinner and the child is her curse.

Many children with special needs never leave their home, hidden from the community.

BLOOM: How are children with disabilities and their families treated?

Martin Milimu: Children with special needs are often considered cursed and continue to be systematically excluded from public schools, creating even more stigmatization within the larger community. Malaika Kids was created to combat this injustice by providing therapy and education to children with special needs.

BLOOM: Do mothers typically become full-time caregivers?

Martin Milimu: Most mothers whose children have severe special needs struggle with the difficult choice of going out to work and leaving the child dangerously unattended, or staying home to provide care all day and thus not earning any income.

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BLOOM: When did you begin the sewing project and why?

Martin Milimu: The Malaika Mums project and Malaika Kids program were started in 2008.

The vision is to provide a sustainable, incomegenerating project for mothers of special-needs children in the community. The mums have an opportunity to earn an income for their families, support an education for their children and create products that improve the environment.

Malaika is a Swahili word which means angel.

BLOOM: What are some of the products?

Martin Milimu: They make reusable cotton bags with graphics related to our programs, messaging or individual customer needs.

One of our current bags features a group portrait of the women that make them. They also make reusable cotton coffee sleeves that protect your hands and the environment.

BLOOM: Is Whole Foods the major buyer of the tote bags?

Martin Milimu: Yes, Whole Foods Market is our major international buyer. The products are purchased through Allegro Coffee, Whole Foods’ coffee supplier and can be found at the Allegro coffee counter at Whole Foods. We also sell these bags locally here in Kenya and in numerous shops throughout the U.S. We also have partnerships with several coffee distributors and have merchandise in over 25 smaller coffee shops around the U.S. Bags and sleeves can be ordered in the store on our website: ctcinternational.org.

BLOOM: What is the goal of the sewing project?

Martin Milimu: By working together, helping each other, and building a sustainable business, the Malaika Mums have breathed new life into the community of Maai Mahiu while supporting the development of Malaika

Photos by Chelsea Dee

‘These women now have a steady source of income, the comfort of knowing that their children are receiving the attention they deserve and a true sense of pride in themselves.’

Kids, the only special-needs program here providing rehab therapy, structured education and nutritional support.

BLOOM: Do all of the children of the sewing staff attend the school while their mothers work?

Martin Milimu: Nineteen of the mums have children with special needs in Malaika Kids, and two of the mums have physical disabilities themselves. The Malaika Kids are located next to the Malaika Mums so the mums can check in on their kids throughout the day. Another 12 kids attend our children’s program, but their mums do not work with the sewing program.

BLOOM: What types of disabilities do the children have?

Martin Milimu: They have various physical challenges. Cerebral palsy is the most common medical condition. Some kids have dyslexia, Down syndrome and intellectual disability.

BLOOM ~ winter ~ 2013 ~ 11

aroundtheworld Twenty-five students aged three to 18 are enrolled in the school. Two students commute weekly from hospitals nearby to participate.

Three specialized classes—Shooting Stars, Happy Angels and Busy Bees—cater to children with varying needs, from physical impairments to brain and development disorders.

BLOOM: What are typical daily activities at the school?

Daily activities include developmental therapy to promote function and reduce dependence and structured educational programs to help these kids attain academic skills.

BLOOM: Have you seen changes in the mothers?

‘Almost every Malaika Mum has said that before joining the program she thought that she had the only child with special needs in the entire community.’

BLOOM: Do the mothers’ attitudes toward their child’s disability change as a result of working with other mothers?

Martin Milimu: Almost every Malaika Mum has said that before joining the program she thought that she had the only child with special needs in the entire community. They have expressed great gratitude at having a community of support where they can share the difficulties and triumphs as they raise their children.

Knowing they are not alone has been one of the most widely-stated benefits of the program.

The mums are happy to have their kids receive these fundamental services and they feel as though CTC has helped their kids reach the next level in their development.

The mums are empowered to be proud of their children instead of ashamed.

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Martin Milimu: These women now have a steady source of income, the comfort of knowing that their children are receiving the attention they deserve and a true sense of pride in themselves.

This income allows them to fully support their children’s special needs, the needs of their entire family and break the cycle of poverty.

The Malaika Mums are well respected members of their community, reshaping conceptions of women and special-needs children.

BLOOM: How has the community responded?

Martin Milimu: There has been a series of changes from stigmatization to acceptance of special needs kids in the society as a result of the [programs], following sensitization about special needs and the services these kids need to benefit from. Currently, many children in the community with special needs are being brought here for assessments and advice and many are on a waitlist to join the Malaika Kids program. Unfortunately we can’t accommodate all of them because of our limited space and lack of resources (staff and equipment).

Cast out because of her daughter’s disability, Joyce finds new life

Joyce Njeri is a 23-year-old Kenyan mother of two who was abandoned by family, friends and her employer after daughter Tabitha got meningitis and a brain injury.

The Malaika Mums sewing project—and its school for children with special needs— enabled Joyce to rebuild her family’s life.

BLOOM: Tell us about Tabitha.

Joyce Njeri: Tabitha was okay developmentally until the age of three when she got meningitis that advanced to the nervous system. She was hospitalized for one month and regressed.

She could no longer talk, sit up, stand, walk, or feed herself. Additionally, she lost her sight. Tabitha likes laughing and feels comfortable when around other people.

BLOOM: How did you feel when you learned your child had a disability?

Joyce Njeri: I was in shock and stressed. I even got ill. I had counselling sessions and had to adjust to the situation. I learned that anybody can become disabled at any time and that having a child with special needs is not somebody’s choice and it is not a curse from God like some people in the community [believe].

BLOOM: Had you had any experience with disability?

Joyce Njeri: I had seen another child with the same condition as my daughter, a neighbour’s son, and he had been isolated from his siblings and nobody liked him.

BLOOM: What impact did your child’s disability have on your family?

Joyce Njeri: The father of my daughter was incited by his family members to believe this was my fault and that he could become infected with the same condition. My uncle had a stroke so they thought Tabitha’s

BLOOM ~ winter ~ 2013 ~ 13

aroundtheworld illness was genetically from my family or that I come from a cursed family.

Tabitha’s father even at one time attempted to poison [her]. He stayed with us for a very short period and decided to leave, then got married to another lady. My mother and some of my friends also isolated themselves from Tabitha and me.

My mother had to rent a different house and an apartment away from our home for me and Tabitha so that we would stay away from her.

BLOOM: Without the sewing project and the school, what would life be like for you and your child?

Joyce Njeri: Life would be a bit difficult because before I joined the sewing project I used to work as a house girl and what I was paid was not enough to support all our needs. Also my employers sent me away claiming that my daughter Tabitha would transmit the same problem to their kid.

BLOOM: When did you join the sewing project?

Joyce Njeri: I joined in July 2011. By then, my daughter was already enrolled in the Malaika Kids program.

BLOOM: What are the benefits of working with other mothers who have children with disabilities?

Joyce Njeri: It offers me emotional support and encouragement—especially when we share life stories and the changes that have taken place in our lives having these kids with special needs.

BLOOM: Are you able to share practical advice and emotional support with the other mothers?

Joyce Njeri: I am able and ready to share with anybody my life story, whatever I have learned about children with special needs and the fundamental services and support they require.

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BLOOM: What is your favourite part of the job?

Joyce Njeri: I like stitching cut fabric together to come up with the end product.

BLOOM: How has having this job changed life for your family?

Joyce Njeri: It has really transformed my life. Now I can afford to take care of my family’s basic needs.

BLOOM: How has your child benefited from the school program?

Joyce Njeri: By [receiving] developmental therapy to address [her regression] I have seen improvement towards independent functioning in a few skills like being able to sit again and manipulate objects with her hands.

BLOOM: Has the way you feel about your child’s disability changed since you became involved with the sewing project?

Joyce Njeri: I am settled and well-adjusted to the situation and my condition of living and taking care of this child and the family’s needs. Some of my friends can now accept and mingle with me.

BLOOM: What advice would you give to other mothers who live in cultures where children with disabilities aren’t accepted?

Joyce Njeri: Having a child with a disability is not a curse like some people [believe], it is something that can happen to anybody. We just need to accept and love that child as any other child and seek… helpful services.

BLOOM: What are your dreams for the future?

Joyce Njeri: I would like to own my own home so that I do not have to pay for housing anymore. [And I would like to] teach my youngest daughter how to take care of and help Tabitha who requires special attention.

anewlens

A positive weakness A French geophysicist sees the power of fragility in nature­– and in us

Xavier Le Pichon is a world-renowned geophysicist who helped create the field of plate tectonics—discovering that the earth’s outer crust is made up of plates of rock that continuously shift all over the globe.

In Iceland’s Rift Valley (above) two major plates can be observed drifting apart.

Le Pichon is a professor emeritus at the Collège de France in Aix-en-Provence. While developing his scientific theories, he lived with his wife and six children in the original community of L’Arche in Trosly Breuil. L’Arche brings together adults with intellectual disabilities and young adult volunteers known as assistants.

Le Pichon makes fascinating observations about the value of fragility—whether in the earth’s rock or in people and communities.

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anewlens BLOOM: Our culture views disability as a loss—as taking away an essential part of a person. How do you view disability?

Xavier Le Pichon: In L’Arche, I do not think of the [people] as having disabilities. They are just friends. I consider some of them as being the closest friends I ever had. When you love somebody, you do not think of him as having disabilities. He is what he is. That’s it.

‘Contrary to what is often assumed, the weak and imperfect parts of a system are often those that allow evolution to occur without a major revolution.’

BLOOM: In your study of the earth’s plates, what did you learn about the benefits of fragility?

Xavier Le Pichon: An obvious example concerns earthquakes. Earthquakes on [rock] faults do not occur below a depth of 15 to 20 km because the increase in temperature at this depth causes small defects in the crystals within the rocks to decrease in rigidity, allowing them to [change] form without fracture. They become what we call ductile, they flow.

In contrast, above this depth the defects are frozen because of the colder temperatures.

These weaknesses cannot be expressed, and as a result the rocks are much more resistant.

They maintain their rigidity until they are fractured, producing an earthquake.

Thus we have rigid and brittle rocks within the upper layer and ductile rocks in the lower layer that can become [refashioned] in a continuous [way] through the action of tectonic forces.

The same is true for all systems that need to evolve.

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Contrary to what is often assumed, the weak and imperfect parts of a system are often those that allow evolution to occur without a major revolution. This is also true for the evolution of life, which is in great part based on the occurrence of coding errors during the duplication of genetic information.

Communities that are very strong, very rigid, that don’t take into account the weak points of the community—the people who are in difficulty— tend to be communities that do not evolve.

BLOOM: How could your findings about the Earth’s plates influence the way parents view their children with disabilities?

Xavier Le Pichon: This is a difficult question because you ask me to make a big jump from the Earth to [people].

When examining any system, including any group or society, it is necessary to study it as a whole. Its functioning is determined by the interaction of all its parts. The elimination of parts that may appear to be less efficient may significantly change the overall functioning of the system and may actually prevent it from working!

We have a need to convert our vision to discover what these children bring to us and to the family and society. This is a long-time job. Father Thomas Philippe, who was at the origin of L’Arche, often told me: “With your children, consider first what is going well. Do not worry too much about what is not working properly, [which] you may not be able to change. This is the only way to keep up hope.”

BLOOM: Can disability be a force that gives something to a person, rather than only taking away?

Xavier Le Pichon: I would say that it is neither a force nor a deficiency in itself. It will be one or the other depending on the way

the person with a disability is—or is not— [welcomed] in the group and [in] society.

BLOOM: In a recent interview, you said that fragility and empathy are what define us as people. This is different from the philosophers who said cognitive ability makes us human.

Xavier Le Pichon: What I discovered is that the real major difference between human societies and other societies of living beings is that humans have a capacity for empathy, which leads them to take care in a permanent way of those who have been affected by major suffering and handicaps.

I was very impressed by studies of skeletons of 100,000-year-old humans which demonstrated that these people took care of heavily handicapped people [for decades].

This is most remarkable as these people were nomad, hunter-gatherers who lived in groups of 20 to 25 people at most.

Since then, [I’ve tried to answer this question]: What motivated these people to permanently change their [way of] life to take care of a crippled man who could neither walk, nor feed himself? It appeared to me that the most revealing aspect of human societies is that they take care of those who—when considered on the sole basis of immediate utility—appear to be ‘debris’ that should be discarded.

‘Society becomes closed and inflexible by concentrating on only those who are, or will become, productive.’

Taking care of fragile and vulnerable individuals has revealed to humans their own fragility and vulnerability. They have come to [understand] that the social presence of an individual within a human society creates a tight network of relationships, of emotions, and, more

deeply, of love that has been progressively woven throughout their lives—and is not valued primarily for its material utility.

BLOOM: In the past our culture hid people with disabilities in institutions. Now there’s a move to prenatal testing and termination. How do you feel about this?

Xavier Le Pichon: We definitely have made progress by not hiding people with disabilities in institutions. But we have to remember that there will always be fragile human beings, no matter what progress science makes. As soon as we label one category as having to be eliminated, in the absence of [a] possible cure of their disabilities, the society enters a morally very dangerous ground. How are we going to explain to those of this category who have escaped this screening the policy we apply? And how will those of us belonging to other categories of people with disabilities be able not to think that [our] life is not worth living and that [we] are a burden [to] society?

When faced with the suffering of terminally sick, [elderly] or deeply handicapped persons, we are confronted with an extremely difficult and

BLOOM ~ winter ~ 2013 ~ 17

anewlens painful choice. We may say, ‘I can’t,’ ‘I don’t want to,’ or ‘I don’t want to anymore.’ This is rejection.

Society becomes closed and inflexible by concentrating on only those who are, or will become, productive, or it opens up and becomes flexible by focusing on new avenues, new dialogue, and a new way of life. Through this [second] approach, people will invent new values for society, such as communication, openness, and sharing. [People] who are not capable of direct contribution to the survival of society will discover that they are, therefore, welcomed as full contributors. And this ‘welcoming’ profoundly changes the society that offers it.

BLOOM: What do we lose when we can’t see the value of people with disabilities and try to distance ourselves from fragility?

Xavier Le Pichon: Fragility will one day catch up with us and the awakening will be a very painful one. We may indeed then decide that our life has no more meaning and that it is better to disappear.

BLOOM: Recent French implicit association research shows that negative stereotypes about children with Down syndrome are deeply embedded at an unconscious level—even in adults who outwardly say they accept children with disabilities.

Sometimes I despair at our ever being able to uncover these stereotypes and change them. How do you think we could create a change in public perceptions?

Xavier Le Pichon: The recent movie The Intouchables in France, about a paraplegic, [was] a huge success and significantly changed the French vision about physically handicapped people. This is heartening. It shows that we should not despair but that we need to give more and more opportunities to our contemporaries to share our friendship with our dearest friends through books, movies, and, even better, through personal relationships.

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The wheelchair upended Performance artist Sue Austin is shattering common perceptions about the wheelchair by taking it places it’s never been before.

As part of the Cultural Olympiad events in London last year, people watched Sue move effortlessly underwater like a mermaid— except she did it in a wheelchair.

Motors under the chair propel her forward while Sue steers two acrylic hydroplane “fins” that curve out from the footplate with her feet: up, down, side to side and loop the loop, like a pilot doing graceful air manoeuvres.

Sue appears weightless, unlimited, even glamorous—her long dark hair waving behind the chair, a rush of oxygentank bubbles escaping upwards and a school of exotic orange fish passing by.

But something upends the spectator.

The liberating images of life under the sea jar with our conventional notions of wheelchairs.

“I wanted to open up a new space where people feel the clash of their preconceptions meeting this new image, and it allows people to view a wheelchair in a completely different way,” Sue says. “I wanted to create a narrative that frees everyone.”

BLOOM ~ winter ~ 2013 ~ 19

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rolemodel

Emily’s advice: If it’s part of me ‘I learn to love it’ Emily Chan, 16, has a rare neuromuscular condition that creates general weakness and serious breathing problems. She uses a ventilator and a power wheelchair.

At six months, when she was in an acutecare hospital, her parents were given the option of stopping medical treatment.

Photos by William Suarez

“They told me I have a choice,” says Peggy Chan.

“That I don’t need to keep her. The doctor said they had families who choose to give up their baby because they won’t have any quality of life.

I was very mad and I said: ‘Are you crazy? As a mom, you’re not even giving me a chance to try to raise her?’ If I had given her up I would have regretted that decision for the rest of my life.”

Emily lived for six years at Holland Bloorview before her medical condition improved and she was able to move home with her parents. Emily says she likes “all the typical teenager stuff” and wants to go to university to become a child psychologist.

BLOOM: How do you define quality of life?

Emily Chan: It’s living each day to the fullest, being happy. I think everyone deserves to have that chance. The purpose of life is to be happy, to be happy with yourself and what you’ve done and hopefully make a difference somewhere.

BLOOM: What is your life like now?

Emily Chan: I have a great life. I have everything — family, friends, cute guys to look at. Everything is going great in my life. I have pretty good marks at school—an 82 per cent average. I like Facebook and I’m really into (Korean)-pop. I play the guitar and piano and really love doing that. Whenever there’s stress in my life I pick up my guitar and play my worries away. It’s a great stress reliever. I like talking, hanging around, going shopping, going to see movies—all the typical teenager stuff. I love Harry Potter.

BLOOM: What about reading. Do you like those teen romances?

Emily Chan: No, that’s so cliché. I like the deeper, darker stuff. I’m just finishing The Hunger Games.

BLOOM: What are your dreams for the future?

Emily Chan: I want to become a child psychologist. I also want to have a family and drive a Ferrari—don’t we all? But right now I just want to get to university. Living in a hospital for the first six years of my life has given me a broader perspective of things. I got to interact with adults more than the average kid, which made me mature faster. It’s like my brain is 20 when I’m 16. I’ve known a lot of people who had to go through really difficult situations

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and I’m less quick to judge. I know that even though a person may appear a certain way it’s because of something that’s happened to them in the past. You have to see the person, not just the person they appear to be or how they act. I understand the feeling of being isolated, which will help me understand someone who feels alone for different reasons.

BLOOM: How do you view disability?

Emily Chan: It’s just a part of you. God made you this way for a reason and you have to learn to love yourself. You have to realize that a disability isn’t going to hold you back. My mom always told me that it doesn’t matter how you do something as long as you get it done. If you have a wheelchair it just becomes another part of you. And sometimes you can use it to your advantage—like running over people you hate!

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BLOOM: Some kids resist what makes them different.

Emily Chan: You need to embrace it, because you can’t change it. If you want to live a good life you have to be happy and being happy means loving yourself. You do it for the sake of you and your happiness. Everyone has flaws, no one’s perfect. For me it’s my equipment. But I learn to look past it.

BLOOM: How do you see your equipment?

Emily Chan: It’s a part of me, so I learn to love it. If someone rejects my equipment they’re rejecting me because it’s grown on me. If they ask ‘Why do you use that?’ they’re kind of insulting me. I help my mom when she changes my trache and if I need to suction, I’ll do it myself. It makes me feel like I have more control in my life.

rolemodel BLOOM: What is it like for you to be in a regular high school?

Emily Chan: I feel I’m really lucky because I go to an arts school and there’s a lot of diversity there. They have so many different kinds of people that the students are more accepting. If I went to any other school I think I would be more outstanding, more prominent. Here I’m just part of the diversity.

Something that helped was there was a class where students with physical disabilities could go at recess or lunch and I became very close to those people. They were friends I could talk to and fall back on, and I think that kept me going. I learned not to let things get to me. To look past a hurtful word and feel sorry for that person because they have to bully someone just to boost their self-esteem.

BLOOM: Did you ever have trouble with other kids at school?

BLOOM: What advice would you give parents of children with disabilities?

Emily Chan: When I went to my home school for Grade 2, I was the only one in a wheelchair and it was hard. They were always teasing me. For group projects no one wanted to partner with me. These kids had been together since kindergarten and were close knit.

Emily Chan: Don’t give up on your kid—no matter how grim the situation might seem.

Always stay positive. You have to put in the time and the effort. Kids need their parents to give them love and support. Nurses and doctors will have sympathy, but it’s not the same as a mother’s hug that gives you that warm feeling. Every kid needs that. What got me out of Holland Bloorview was the constant pushing and love and support of my parents. They got me the treatment and the help I needed to thrive. My mom had a drive to bring out my potential and I think every parent should have that. In my opinion, many parents don’t have that devotion anymore.

BLOOM: How do you think they viewed your disability?

Emily Chan: Like it was going to hold me back: ‘She’s not normal, she doesn’t fit in with the rest of us, she’s an outcast, she can’t do anything.’

It doesn’t happen much now, but there was a group of girls taunting me at school. When I went past them one said ‘Oh, you almost ran over my foot’ when I was no where near them.

I said ‘No, but would you like me to?’ I like to use humour to turn the joke back on people.

BLOOM: Is there advice you’d give kids who struggle to make friends?

Emily Chan: I tried to approach kids and be friends with them but it didn’t work out that great. I did become close to one girl and she stuck by my side. In Grade 7 and 8, I found myself developing a skill of not letting people take advantage of me. I can stand up to people and fight back, instead of being tread upon.

BLOOM: Is the condition you have usually progressive?

Emily Chan: I’ve done some research about it and read stuff online about boys who have the diagnosis. It’s rare for a girl to have it. For the boys it’s a progressive condition and it keeps getting worse and worse. I’m really healthy now and I don’t have issues with pain. I think part of it is living at home and not being in a depressing hospital. I have more room to grow and expand on new things and explore what’s out there.

BLOOM ~ winter ~ 2013 ~ 23

Seeing Europe

from a chair

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traveltips Travelling in Europe with a child who uses a wheelchair isn’t easy. Public transit, hotels and restaurants—even in major cities—can be inaccessible.

But Ben Hopper, 16 (left centre), and his family spent four fabulous weeks in Northern Italy and Southern France this past summer. Ben’s mother Michele shares how they did it.

Take a fold-up wheelchair “Our best investment was having the portable wheelchair,” Michele says. “This was a travel wheelchair that folded up like a big umbrella stroller when we were getting into a rental van or cab. We wouldn’t have had room for Ben’s big wheelchair. The portable stroller also allowed us to lift Ben up multiple levels of stairs in subways that didn’t have elevators.

Ben is only 100 pounds and the stroller is 18 pounds. It has big wheels and absorbs some of the shock on cobblestones. As Ben uses his iPad for communication we were able to have it mounted on the chair before we left.”

Travel with other families The Hoppers visited Europe with two other families—which meant six adults and seven children. “With four people we could carry Ben up tons of stairs chariot-style. We were in a full-blown sweat, but it was doable. It was never just Christopher and I trying to figure out what to do. There was always someone else who could run off and grab what we needed. There were always enough hands. There’s something to be said for having power in numbers.”

Rent homes from owners “We spent a week in each house, which was perfect for a kid like Ben who needs routine.

When we arrived, Ben would stay in the car and I’d set his room up and then we’d bring him in and he knew he was staying there for the week. He liked the security of having his stuff unpacked. We found rental owners were honest about how we could get Ben in and out. They would answer our questions about

access, like how big the doorways were. The two times we stayed in a hotel we found them unhelpful. Even though I’d specified that I had a child in a wheelchair they’d put us on the third floor. Or the elevator wasn’t big enough for a wheelchair. They didn’t seem to care.”

Choose smaller towns “We knew how far behind the cities were in terms of accessibility and how we’d be there with thousands and thousands of tourists. That could make Ben anxious in his chair. We stayed in smaller towns where you get the feel of being in Europe and the people paid attention to us. They wanted to help. You have to rely on strangers, but strangers are okay with that. There was a lot of empathy and a lot of people who wanted to make sure that Ben was okay. The small towns were a great base we could do daytrips from.”

Rent a large-enough vehicle “We found an eight-seater van that is much smaller than our North American vans. Go online and check the seating plan of the vehicle.

We ended up with something called a Peugeot Expert which is like a cube van. In addition to ample seating, this van was big enough to change Ben in. A big issue mid day would be where to change Ben. Everyone would get out and I could maneouver him easily.”

Bring electric plug adapters “If your child loves movies, make sure you bring electric adapters. We brought a portable DVD player and a collection of Ben’s documentaries and movies.”

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trailblazer

Mary-Ann Nova steps into her miniature jungle cat’s cage the same way as always: holding a dog dish filled with a fat-laced slab of chicken. Her 40-pound caracal Sassi—a lynx-like cat that fells small prey with a swift five-metre leap and a bite to the neck—is perched, hissing, on a platform above.

Pressed against the cage, about 25 children stare, their fingers intertwined with the structure’s chain-link fence, trying to get as close as possible.

To one side, miniature pigs squeal and crash into their pen’s walls. To the other, a young woman clutches a three-foot bearded dragon to her chest like an over-sized, amphibious infant. Still, all eyes remain fastened to Mary-Ann and Sassi.

Mary-Ann ignores the hissing. She lays the dish down, steps back and absentmindedly twists her tangerine-orange hair into a bun. Sassi descends and circles the food before eating.

After she tears the last piece of meat, Mary-Ann makes contact and Sassi melts into a seated position while her owner strokes her back.

“Some people are just like Sassi,” the 57-yearold explains to her audience. “They’re very anxious at first, so you need to learn how to approach them carefully, at their own pace.”

Not one word is ignored. Mary-Ann’s voice doesn’t just calm, it mesmerizes. Some children in her audience have disabilities and are accompanied by volunteer mentors. Others are typically developing. But they’re all absorbing

the same inclusionary lesson in Mary-Ann’s backyard through a program called Nova’s Ark. Mary-Ann’s been a bit of a misfit her whole life, but here, she’s found her calling.

Nova’s Ark is a day camp designed for children and adults with special needs. On any given day in the summer, there are about 15 to 20 children and young adults visiting Mary-Ann’s property.

The camp caters to children with a range of disabilities. Over the past 10 years, Mary-Ann has collected more than 60 different animals from rabbits and turtles to hawks and kangaroos. She builds her programming around the animals, using the critters to bring campers together.

“Some children may have trouble socializing or relating, but when they see these animals, it starts a conversation,” she explains. “The animals are something everyone can relate to.”

It isn’t what Mary-Ann intended to create.

In 1998, she left her Whitby subdivision and moved about 10 km north with her husband, Geoff, and son, Kyle. They settled on a 10acre property in Brooklin, Ontario.

Mary-Ann, then principal at Sir Samuel Steele Public School and former special-needs consultant for the Durham District School Board, bought two horses and some house pets. She wanted to use them to provide alternative summer programs for a few children with severe developmental and physical disabilities who were friends of the family.

BLOOM ~ winter ~ 2013 ~ 27

trailblazer Mary-Ann was discouraged by the existing school education available to kids with special needs. She felt students were unfairly subjected to one-size-fitsall standards of success.

If kids didn’t fit the model, Mary-Ann says, they were given up on.

She was familiar with the feeling: Mary-Ann has a learning disability that makes it difficult for her to understand written information. Growing up in Selkirk, Man.—about 20 km north-east of Winnipeg—she struggled academically. In elementary school she was called unintelligent by teachers. As a teenager, Mary-Ann says she was told she’d amount to nothing “except maybe get married and have some kids.”

Mary-Ann was a farm girl, and found barnyard animals like pigs and horses comforting. As an adult, she started believing they could be used to teach empathy. She saw animals as catalysts for bonding between humans.

Mary-Ann started small: about five kids each summer and on weekends. She gathered volunteers—mostly teenagers from unstable family backgrounds or those who were struggling academically. She wanted to give them chances to thrive. At the same time, she collected increasingly exotic animals, working up from guinea pigs and goats to a python and zebras. Many came cheap: they’d been abandoned at birth or abused by breeders.

In 2004, Nova’s Ark became a registered charity.

Soon, Mary-Ann had amassed an army of over 60 part-time volunteers. In 2011, she left the school board—abandoning a six-figure salary

28 ~ BLOOM ~ winter ~ 2013

and nearly her full pension— to build Nova’s Ark full-time.

Mary-Ann admits that growing the program was challenging.

She and her family share everything with Nova’s Ark— their time, labour, even their living space. “There’s always something in the house,” she says. “We’ve had a play pen in our bedroom with a baby wallaby. We’ve had a capybara that spent evenings on the couch watching television with us. In the winter we open up the deck-room door and the lemurs come in and sit in front of the fireplace or on our shoulders.”

Geoff, who’s “not an animal guy,” sometimes gets frustrated, particularly when she makes decisions without consulting him. Once, the former General Motors executive went away on business and returned to a five-foot tall baby camel on his couch. Another time, MaryAnn sold the dining-room set while he was gone, and began converting the space into a parrot room. Still, she says, “When he sees our children with special needs or hears from the parents and sees how happy they are, he understands.” They have been married 35 years.

The Novas also faced financial stress. In the three years before Mary-Ann quit her job as school principal, they contributed about $100,000 of their own funds annually to the program.

When Mary-Ann no longer collected a salary, they used their savings. Nova’s Ark can’t secure government funding because the program doesn’t fit squarely into existing application categories. But corporate and private sponsors— like Home Depot, FreshCo and Autism Ontario— have come through. This April, after 15 years, the Nova family was able to stop contributing, relying solely on sponsors for funding.

Mary-Ann only accepts campers with disabilities into the program, a choice she plans to stick to.

“The campers who come to see me are always being told to wait, always being pushed to the back of the line,” she explains. “There are lots of opportunities for [other] children. I wanted to create a space for children who need this most.”

Sometimes Mary-Ann lets other day camps— mostly made up of typically developing kids— visit her property for the day (for example, a Toronto day camp is in attendance during MaryAnn’s lesson about Sassi). When other camps come, the visiting children are encouraged to interact with Mary-Ann’s campers. This way, she says, both groups learn from each other.

Once Mary-Ann finishes feeding Sassi, her audience disperses. She moves to her porch and watches children choose their activities.

This part of the day is deliberately unstructured: Mary-Ann believes that kids with disabilities

shouldn’t be bound to rigid learning schedules.

Instead, she gives campers charts with activity options—trampoline time, spa activities, crafts, discovering animals—and allows them to decide their own schedules at their own pace with the help of volunteer mentors.

It could be chaotic, but under Mary-Ann’s ringmaster-like watch, it’s calm. “Over there are Connor and Sierra,” she says, pointing to a boy with autism and a girl with cerebral palsy.

“Some people may say that I’m very crazy and that I’m very eccentric, and they can say that, but just look at this.” Connor and Sierra, along with their mentors, lead two donkeys across the lawn. “And look,” she says, “here comes our bearded dragon.” This time it’s led on a leash. Close by, some children swing from a tire attached to a tree. Others use oversized wands to make large, clumsy bubbles.

By Megan Jones

BLOOM ~ winter ~ 2013 ~ 29

Do doctors grieve?

This study says yes, and it hurts them and their patients Grief is natural, but no one talks about the loss doctors feel when their patients die, according to a qualitative study of 20 Canadian oncologists published in Archives of Internal Medicine.

Because emotion is considered a weakness in medicine, doctors hide their feelings, researchers found. This harms them personally and has negative impacts on patient care.

BLOOM wondered if rehab professionals might have similar emotions when working with families—particularly those whose children acquire disability through trauma. We interviewed study lead Dr. Leeat Granek, a health psychologist who is an assistant professor at Ben Gurion University of the Negev in Israel.

30 ~ BLOOM ~ winter ~ 2013

BLOOM: What were the key results of your study?

Leeat Granek: In medical culture, emotion in general is not acceptable. Physicians are supposed to be objective and scientific and to make their decisions based on science. Grief is considered a weakness.

There wasn’t much space in oncology for physicians to talk about grief or loss.

In palliative care, nurses and doctors have debriefing and support groups, but there was nothing like that in oncology. Doctors said they would feel uncomfortable talking to another oncologist about their feelings of grief. One of the reasons I wanted to do this study was I

researchhits thought it was very odd in a specialty so defined by loss that there would be no acknowledgement of it, or grief training, or forums to talk about it. One thing the doctors did talk about was the focus on cure. Everything they’re trained in, and trying to do, is working towards cure.

So when a patient dies, it’s considered a personal and professional failure. It’s the part of the job you don’t want to talk about.

BLOOM: How does the inability to share grief affect doctors?

Leeat Granek: There was a personal spillover. They were more agitated or irritated at home and it affected their quality of life and enjoyment of the job. Impatience, emotional exhaustion and burnout were also talked about.

BLOOM: How does unacknowledged grief affect the way doctors care for patients?

Leeat Granek: One of the things they talked about and felt sadly about was withdrawing from their patients as they got closer to the end of life. A big impact was being reluctant to stay present during the patient’s death, not wanting to walk over to the palliative care unit and see the patient as they got closer to dying.

They may have known that patient and family for 20 years. They’re really connected and they know they’re going to feel sad. If you view death as a personal failure and you weren’t able to cure this patient, that’s difficult to deal with.

Withdrawing is a practical and a coping strategy.

But one thing physicians really wanted to know was what patients and families wanted from them at end of life, what would be helpful. Institutions and medical schools and hospitals aren’t talking about this. Physicians aren’t talking to other physicians about this.

Patients aren’t talking to physicians about this. Everyone is curious about what the other side wants but there’s a lot of silence around

the issue. Of course there isn’t one thing that all patients will want, especially in a place like Canada that is culturally diverse.

BLOOM: What kind of supports can bring grief out of the closet for physicians?

Leeat Granek: Acknowledging that this is part of the job, forums in which they can share experiences, having a half day or weekly or biweekly meetings where people get together to talk about patient loss. One thing we found in our study was that oncologists want to meet with other oncologists in the same field rather than meeting with a mixed group of health professionals. They want to talk to others— some more senior and some more junior—and know the other person will understand them.

The other part is vacations, sabbaticals and psychosocial support. These physicians are dealing with chronic patient loss and never get a break from it. They may have as many as four patient losses a week. This is an institutional problem—it’s not the individual physician’s burden to cope with. Hospitals need to set up the structure to support physicians so they don’t get depleted.

I gave four grand rounds at Toronto hospitals and the feedback was that this was the first time anyone had heard anything on the topic.

At one of the grand rounds a respected, senior oncologist at the end of the talk jokingly said: ‘Can we make appointments to come and see you?’ Everyone laughed, but that doctor gave permission for others in the room to start talking and that’s when the discussion opened up.

BLOOM: In children’s rehab we aren’t dealing as often with death, but with congenital disability or disability acquired through trauma or illness. Families go through a grief process.

Do you think rehab professionals experience loss they feel the need to push down?

BLOOM ~ winter ~ 2013 ~ 31

researchhits Leeat Granek: I definitely think grief and loss is a part of any medical professional’s work where you’re experiencing these types of incredible losses. If there’s a loss of functioning of who the child was before and the professional is trying to improve the situation and isn’t able to do that, that might lead to grief.

It’s also difficult for parents because there’s still a stigma about grieving in our culture. We’re not very good at it. People are encouraged to move on quickly from losses. If your child has been in an accident, people are supportive up front, telling you it’s going to be okay, you’re going to get rehab, keep going, but then that tapers off. Within a month or two the support disappears and many people don’t want to hear about it. There isn’t a lot of understanding about how loss will continue along the way as this child grows and they’re not doing developmentally what they would have been doing. And most people don’t understand that it’s not about curing loss or grief—it’s about sitting with it.

To live full lives we have to be able to grieve.

It’s so simple, but we have such a hard time with it. I often like to say I’m an activist for grief, which is a funny thing to take on, but I believe what I am is an activist for love. They come together. Our ability to acknowledge grief and loss is our ability to experience the full spectrum of human emotions and to connect with other people. That comes from our vulnerability, not from our places of strength. When we’re not allowed to grieve, it makes things so much harder for people whose child has gone through a trauma or who have a child with a disability.

Incontinence and kids:

A toileting taboo Pee and poop. We all do it. But what if you couldn’t control when you went?

What if catheters, timed toilet trips, medication, diapers and sometimes surgery couldn’t guarantee that you wouldn’t have an accident?

How would you keep it a secret?

And how would other kids treat you if they found out?

Urinary incontinence and how it impacts children socially was the focus of a qualitative Holland Bloorview study of 11 youth with spina bifida aged six to 18 and their parents.

“No one can tease the kid in the wheelchair, but it’s not ‘normal’ to be in a diaper when you’re eight-years-old,” said lead researcher Amy McPherson, recounting what children told researchers about how other students responded to their incontinence.

Researchers found that about half of the children were bullied—with a couple being completely ostracized— and most had no close friends. “One parent said she hadn’t organized a birthday party for her child because she didn’t think anyone would come.”

Two children who had learned to selfcatheterize at an early age did have

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researchhits

good friends and participated in typical childhood activities like sleepovers and camp.

But telling their friends about it was nerve-wracking, Amy said.

“Even the kids who functioned well said, ‘Well, I decided to tell my friends before they found out and ran away screaming.’ And even those kids didn’t share ‘the whole story.’ They just told their friends they do things a little differently.”

Toileting in our culture is one of the last taboos, and for students, having an accident or a partially-visible diaper was “social death,” Amy said.

“Because of the stigma, and the fear that others may find out, these students don’t often put themselves out there and instigate friendships,” Amy said.

Ironically, parents who were interviewed separately from children often insisted that their child was a normal kid. “Then as the interview went on, it became obvious that their child didn’t have friends and wasn’t participating in activities, sleepovers, sports,” Amy said.

Many parents wanted their children to manage their personal care independently, but often minimized just how hit and miss the process was.

“There isn’t a magic bullet for this,” said Julia Lyons, researcher and outpatient nurse. “These kids have to do a combination of catheterization and taking medications to allow them to hold more urine, and using diapers and pads, and even then it’s not 100 per cent effective.”

Drinking a can of pop, participating in gym class or simply being nervous can erase a child’s vigilant efforts to stay dry.

School accommodations— such as having students use the staff washroom so they can store supplies—often reinforced the perception that they were different.

Typically children’s incontinence wasn’t shared with the class, but the student had a signal to alert the teacher when he or she needed a longer-than-usual bathroom break.

Unfortunately, some of these signals were stigmatizing: “In one case, the Grade 5 student had to place a giant, city-issued traffic cone on her desk to say she’d be back in 10 minutes,” Julia said.

The researchers note that negative stereotypes about “having a leaky body” don’t just exist in childhood. “Adults who are incontinent are less likely to have meaningful employment and romantic relationships, so there are long-term implications,” Amy said.

A larger study is needed to better identify what promotes continence and social acceptance in children with spina bifida. One tool to support children may be an online group.

Dr. Paige Church and Nicole Fischer were the other researchers on the team.

BLOOM ~ winter ~ 2013 ~ 33

researchhits

Science

roundup A child’s disability benefits family and society, parents say Most parents in a study of 16 families raising children with autism and Down syndrome report benefits, says a Holland Bloorview study in Child: Care, Health and Development. Parents said their families were closer and not taken for granted and that advocating for their child created learning opportunities for them and character strengths in siblings. Benefits to society included promoting diversity and community; breaking stereotypes; and supporting other families of children with disabilities.

Risk of violence almost quadrupled for disabled children, report finds Children with disabilities are nearly four times more likely to be the victims of violence than children without a disability, according to a World Health Organization report that drew on data from 17 studies in high-income countries covering over 18,000 children. Children with mental illness or intellectual disability appear to have the highest risk of sexual violence.

The study was published in The Lancet.

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Father’s age linked to autism risk, but overall risk is low Men in their 40s are more likely than those in their 20s to father a child with autism, but the overall risk is still low—about two per cent— according to a study in Nature. The study helps explain the increase in autism rates over the last decade in a huge population—but doesn’t point to paternal age as a major risk. Many factors —including genetic makeup, fetal environment and environmental toxins—pose greater risks.

Isolation strongest predictor of depression in youth with special needs Being left out and ignored is the greatest predictor of anxiety and depression in youth with chronic health conditions and developmental disabilities according to a study presented at the Pediatric Academic Societies’ annual meeting last year. Parent and child reports of 109 youth aged eight to 17 found ostracism was the strongest indicator of these symptoms, and had more of an effect on emotional wellbeing than the child’s medical condition.

your kids ‘in bloom’ If you’d like to see your child here, please email a high-resolution photo to lkinross@hollandbloorview.ca. We will try to feature as many as possible.

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They’ve doneThe it again! unlimited

HBF half pg horiz ads-revided Oct 26:Layout 1 12-01-27 1:37 PM Page 4

Sofia.

David and Lynn Coriat (with daughter Jessica) have donated $100,000 to support BLOOM in 2013.

The Coriats know that BLOOM is a lifeline for parents We’re creating a world without of kids with disabilities and want to ensure it thrives.

limits for children with disabilities.

Thanks to the Coriats, BLOOM leads the international dialogue on childhood disability—combining the best parent and professional advice anddiscover unitinga You can help a child families in an online world community of support. of possibility.

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Holland Bloorview Kids Rehabilitation Hospital: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.hollandbloorview.ca

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