Thursday, May 25, 2017

Filming autistic swim team changed mom

By Louise Kinross

Swim Team is a feature documentary about the sense of community and joy three youth with autism experience swimming on a competitive team called the Jersey Hammerheads. It’s also the story of their parents and their extraordinary efforts to support children who have been written off by professionals and shut out by other families. The film was part of the ReelAbilities Film Festival in Toronto this month. BLOOM interviewed director Lara Stolman.

BLOOM: Why was it important to you to do this film?

Lara Stolman: I’m the mother of a child with autism myself. I was searching for swimming lessons for my son and I found this amazing story.

BLOOM: That’s so interesting, because I assumed as director that you didn’t have experience with autism.

Lara Stolman:
I don’t think I would have seen it the way I saw it, and I don’t think I would have been granted the access I achieved with the families, if I hadn’t been the mother of a child with autism.

When my son was little he had no fear of water. When he couldn’t swim, I was worried he would just wander off and jump into a lake or pool and drown. I found Coach Mike and his wife Maria and they told me about their plans to start their own team. So from a story standpoint, I was there at the beginning, which was great.

BLOOM: The film includes many private and candid moments with the boys and their parents. For example, in one scene Robert, who is 16, learns he has autism. How did it work out that you were present for those?

Lara Stolman: I appreciate that question. It’s part of a documentary filmmaker’s job to gain the trust of the subjects. But in this case it was much easier to get to that point where everyone was comfortable with me, and willing to let me come into their lives with cameras, because of who I am as a parent. We had so much in common from day one.

BLOOM: Some of the most moving parts are when the parents talk honestly about raising their child with autism—including how isolating it is for them and the pain they feel when their child is excluded. What did you learn from the parents?

Lara Stolman: Being a parent of a child with autism I came in knowing a ton, but I still learned a lot. One of the reasons I felt so compelled to make this film was that as much as I had in common with these people, there was something I didn’t have in common: their positive outlook and their willingness to have high expectations.

I had come from a place where professionals said so many negative and terrible things about my child’s prognosis. I don’t think that’s unusual. Doctors tell parents of kids at the age of two or three that your child is never going to college, your child will never speak, your child will never take care of himself. When you hear that repeatedly, it’s extremely discouraging and defeating and can really impact the whole family in a negative way.

When I met Mike and Maria I was so struck by how positive they were. They heard the same negative things, but they persisted with their high expectations with their son. They wanted to see if their high expectations would rub off on the other kids and I believe they did, and they rubbed off on me too. I changed as a mom. I learned the importance of not giving up on your child, setting those expectations high, and not letting the other people around you give up on your child.

BLOOM: So many of the film’s scenes are magical because they’re shot underwater. How did you do that?

Lara Stolman: We had a director of photography who wore a wet suit and encased a camera in a water-proof casing and she swam with her camera. I also used GoPros and we experimented and placed them in different ways and had the boys wear them themselves.

BLOOM: The parents articulate really hard parts of their lives. Did their experiences mirror yours?

Lara Stolman:
Now we’re really getting inside the story. No one has asked me this and I’m a little apprehensive. Of course I did all the interviews. I was on the other side of the camera, and I decided what questions to ask and which questions to edit into the film. I decided how to structure those answers into the film and how to fit the story into the film. My experience influenced it all.

I thought there were very important things that needed to be communicated. The film needed to communicate how hard parents work at helping their children when they have challenges, and how they’re working round the clock. All of the parents in this case had full-time jobs and one was going through a divorce.

It needed to show that sometimes financially for families it’s a burden or a hardship or impossible. It was important to convey that the services and supports aren’t sufficient, and that it can be very scary for parents when they think about what’s going to happen when they’re no longer around.

These kids are generally excluded or ostracized from so many things other families take for granted. The film was about a swimming team, but it could have been a film about a marching band or a theatre group. The point was that these are things that, if you’re a family with typical kids, you know they’re available to your family. And it’s not just for your kids, it’s for the family.

Sports is like the town square. Families can interact with one another and meet one another. In the midst of all of that is a lot of important socializing. If your child is excluded from those kinds of activities, you’re also excluded and isolated as a family. This swim team provided a much-needed sense of normalcy and community that these families hadn’t experienced.

I remember Maria telling me that Mike had never been invited to a birthday party and she’ll never forget the time she tried to invite people to a party for him and no one came. She cried when she told me that story.

BLOOM: I was moved by the interviews with Patty. She would be talking with a smile and then there would be tears running down her cheeks, but she would try to return to a smile. It made me think about how as parents we feel we have to always present a positive face to the world, because disability is so stigmatized.

Lara Stolman: I live about an hour away from these families, but in making this film I definitely became a part of their community and I fell in love with them and their kids. It was really important to me to show that even with a character like Kelvin, who represents a child that needs so much support, that he’s funny and lovable and talented and has things to contribute.

BLOOM: What was the most challenging part of putting the film together?

Lara Stolman: I think the hardest part was deciding what was going to be in the film and what we’d have to leave out. We had such great material, and there were such interesting families on the team. But I knew from the beginning we had to narrow it down. I had a clear sense that it had to be two to four characters in order to really tell an indepth story about these characters.

BLOOM: What do you hope viewers take from it?

Lara Stolman: I hope it inspires other families to set high expectations for their children, and I hope it inspires professionals to not make prognoses when there’s still so much that’s unknown about autism. I also hope the film serves to open the eyes of people who haven’t had experience with autism to the stigma and stereotypes that are still out there. And I hope it shows that young people with autism can have skills, they can be fun and worthy and valuable members of our community.

It’s so important that cinema reflects our lives. People with autism and developmental disabilities and all disabilities need to see their lives reflected in cinema. I hope this film helps in that respect.

BLOOM: I think it would have been hard for you to make this film if you hadn’t been the mom of a child with autism.

Lara Stolman: I have to say that nobody else could have made this film. As a mother raising a child who’s approaching his transition years, I saw that these were important problems that we should make the public aware of. I was aware of these public policy issues about how do we include people with disabilities—especially developmental disabilities—in our community, in the midst of a history where, forever, we’ve excluded them. It wasn’t that long ago that we shipped them off to institutions. What’s really important for these families is that their kids find jobs, and have some semblance of independence, and the film shows how difficult that is.

BLOOM: And even more so now with the cuts that are being proposed to Medicaid, which will affect so many families of children with disabilities.

Lara Stolman:
It makes it even more urgent. The president wants to cut all of this aid. That would make a bad situation even worse.

To find out about upcoming screenings, visit Swim Team.

Wednesday, May 24, 2017

How Western ideas about success fail disabled youth

By Louise Kinross

Much has been written about how using normal development as a rehab benchmark sets disabled kids up to fail and devalues different ways of being in the world.

Now a new study looks at how Western ideas that equate adulthood with independence, work and education marginalize young adults with developmental disabilities—and their parents.

“When transition policies and practices for disabled youth are shaped on achieving this ‘normal’ adulthood, how does that disadvantage youth who aren’t able to participate in valued ways?” asks Yani Hamdani, an occupational therapist who won first prize in the 2017 Bloorview Research Institute Pursuit Awards for her PhD research.

Yani analyzed three Ontario policies aimed at moving youth with disabilities into adulthood, and interviewed the parents of 13 young adults with disabilities like autism, cerebral palsy and Down syndrome. All of the young adults had an intellectual disability and some also had physical disabilities.

One of the most interesting findings of her research is that parents neglect their own lives and health to coordinate meaningful things for their adult children to do.

“We put this expectation on parents to raise this ‘ideal’ adult, but we don’t have anything in the policies to address what happens if the young person doesn’t get there,” Yani says. “These parents are so busy trying to create community life for their children that they don’t spend time with their friends, they don’t do things for fun, and they can’t retire when they want to, because they have to pay for programs and supports. Services are so incomplete that when children leave school the family has to run a five-day program to replace it.”

Yani says she became interested in her research because she used to develop transition programs for youth at Holland Bloorview. “We were starting to do a really good job of transferring clients to adult health care, but many parents I’d collaborated with later talked about the significant challenges they faced in creating a life for their child when they left high school” and services dried up.

Yani’s study used a critical policy analysis approach to “identify and unpack taken-for-granted ideas about disability and what constitutes a ‘proper’ adulthood, and how these shape policies and practices.”

What she found in Ontario policies and interviews with parents were implicit assumptions about a normal adulthood that position disabled teens as problems in need of intervention, Yani says.  

The transition policies—one from the world of rehab, one from education and one from developmental services—“place emphasis on normal ways of being, becoming and acting like an adult,” Yani says. For example, the education one “focused on the idea that almost all students will transition to work, further education or community living.”

These policies are well-intended and help some disabled youth set and reach goals for moving out on their own, going to university or working, Yani says.

But they exclude and marginalize those who can’t. “What is the experience of hearing that you need to be fixed for your whole life?” Yani asks. “How do you internalize that, in terms of who you are in society and what people think about you? While these policies aim to help, they perpetuate ideas about who is valued and who is not.”

One policy attempts to convey diverse ways of living as an adult, but refers to the goal of active citizenship. “What does active citizenship actually look like if a person is not physically or intellectually able to participate?” Yani says. “Is being inactive or passive less valued, and to be prevented?”

For young people who don’t develop typically, we need to think beyond the transition to adult services to health and wellbeing over a lifetime, Yani says. “We need policies and interventions that promote health and diverse ways of living a good life, and that recognize that the Western ideal of adulthood isn't possible or desired by everyone.”   

In thinking back to her time working with families on transition Yani says, “I needed more education and training on what a good life could look like if a person wasn’t going to go to work or college. And I needed to be able to talk about these possibilities in a way that didn’t imply they were less valuable than traditional paths.”

Yani says clinicians need to start talking with families about unconventional futures for their children. “We need to talk to families about a variety of ways of living well, and what they might look like.”

Yani says her findings need to be shared with policy makers and to be part of the dialogue at the beginning of research on transition.

Instead of looking at disability as a problem that needs to be fixed, Yani says we need to embrace diverse ways of living, and view disability as a kind of difference, like we do race, gender or sexual orientation. “We need to free people from social ways of thinking that, left unquestioned, marginalize or disadvantage them.”

Yani was surprised that despite the extraordinary efforts of parents in her study to support their adult children, they didn’t describe this unpaid work as onerous. “There’s a social pressure for these parents to create these lives for their children and to take on the stress, almost without complaint. Our policies are silent on the mental health and social consequences of that for parents.”

Yani notes that some parents did use the word “burden” when describing their fears about care for their disabled child falling to a sibling. “It’s not proper for a parent to say that they feel burdened with this situation, but they do talk about not wanting to burden another child. I found that really, really interesting.”

For youth with developmental disabilities, Yani says we need funding and services that focus on family wellbeing over the lifespan. “Not all parents and youth want the same things, so there isn’t one answer. That’s why we need very flexible policies and supports.”

Yani Hamdani (below left with scientist Amy McPherson) completed her PhD in Social and Behavioural Health Sciences in 2016 at the Dalla Lana School of Public Health at the University of Toronto. 

Tuesday, May 23, 2017

'When I'm swimming, I feel normal'

By Louise Kinross

Swim Team is a gorgeous documentary about a competitive New Jersey swim team made up largely of Latino and Asian youth with autism. It focuses on three of the team's stars as they prepare for competition. "I'm not like other teenagers," says one of these boys. "I'm autistic. When I'm swimming, I feel normal."

We also get to know the boys' parents, who talk about their experiences raising them and their frustration with a lack of school preparation and support as they enter adulthood.

The film was shown at Holland Bloorview a week ago as part of the ReelAbilities Film Festival.

I'm setting up an interview with director Laura Stolman. Stay tuned!

Friday, May 19, 2017

For this scientist, a healthy weight isn't a number

By Louise Kinross

Amy McPherson is a scientist at Holland Bloorview who is co-lead of our Centre for Leadership in Participation and Inclusion. Amy’s research looks at health promotion and obesity in children with disabilities. Eight years ago she packed up her life in Britain and moved to Toronto to become a scientist in our Bloorview Research Institute. “I’d been teaching psychology and sociology to medical and nursing students, and I wanted a new adventure that would focus on my research,” she says.

BLOOM: What led you into the field of children’s rehab?

Amy McPherson:
In the U.K. I did my PhD in self-management in childhood asthma. My research has always looked at empowering kids to look after their health by giving them the knowledge and skills—but also the feeling of control over their health—so that they can manage a chronic condition.

When I saw a job opportunity in Participation and Inclusion here it encapsulated my philosophy of working with children with long-term conditions to help them participate and be as active as they want and can be. I did an interview on Skype and I came here for a meet-and-greet. Then I moved 3,000 miles.

BLOOM: Was that a hard decision?

Amy McPherson:
It was a no-brainer. I was really drawn to the fact that no one here talked in terms of deficits in kids with disabilities. I met people who were committed to giving kids with disabilities a future that was as meaningful as any other kid’s future.

BLOOM: Can you describe your research?

Amy McPherson: When I first came I was interested in our Busy Bodies program, which promoted healthy eating, physical activity and feeling good. My office was embedded with clinicians in Therapeutic Recreation and Life Skills. That was a phenomenal opportunity to understand what went on in the hospital from a clinical perspective. I worked with therapeutic recreation specialists to understand what the kids in the program thought about health: ‘So you have a disability, what does that make health look like to you?’

It was a great introduction to rethinking my notions of what had been quite a medical approach to self-management, and looking at why participation matters. That was a springboard into looking at different aspects of health, wellness and happiness and working with kids with an existing condition to see what they want their health to look like.

BLOOM: Where does weight fit into that?

Amy McPherson: There’s a two to three times higher prevalence of obesity in kids with disabilities. That puts them at risk of the same secondary conditions that any child with obesity faces. But in addition, it can be harder for a child with a disability who is heavier to move around, do self-care and be independent. Different diagnoses also come with specific challenges that make it hard to manage weight.

BLOOM: How can we help clinicians and families address weight issues?

Amy McPherson: I’m very interested in how we talk about weight and weight management. Often kids get weighed and measured when they come in for regular checkups, yet we hear from clinicians that they have concerns about talking about the topic. This is true with kids in general and their families, as well as kids with disabilities. Doctors don’t feel confident and are worried they’ll ruin a relationship. It’s a hugely stigmatized issue and by doctors saying ‘I don’t want to offend anyone,’ they’re acknowledging the implicit stigma in society that higher weights are bad. We want to find ways to address weight and wellness that are not stigmatizing and judgmental, but supportive and positive.

BLOOM: How do you do that?

Amy McPherson: We’re doing something super cool. Working with Christine Provvidenza, we got Centre for Leadership funding to develop a knowledge translation casebook that is a practical handbook for health professionals about how you talk about weight. It will have things like sentence starters and scripts and simulations of positive and less-positive experiences. It will also have case studies and learning guides and will talk about what the evidence says.

One of the fun parts is that we’re working with families, youth, clinicians, researchers and students to co-develop the content for this handbook. It will be online and interactive. It’s for all children and parents, but will also have chapters addressing common challenges related to different disabilities.

BLOOM: What’s an example of neutral language?

Amy McPherson: The doctor could say: ‘Would it be okay if we talked about how you can feel healthy and energized?’ Or ‘Would you be interested in knowing more ways to stay healthy? How can I help?’

We want to encourage clinicians to have a conversation about wellness that suits the child. You may live in larger body, it doesn’t bother you and you have no medical complications. So we talk about what makes you feel well. Or, you might have a higher weight and a lot of medical complications and are distressed about it. So it may be appropriate to focus more on the weight and work together to reduce those health risks. But we need to always address it in a positive way. There isn’t a one-size-fits-all, and not everyone who weights over ‘x’ has to be subjected to a medical intervention. It’s not realistic and the evidence doesn’t support that.

Research shows that the vast majority of people who lose weight regain it. Physiologically our bodies will always try to put that weight back on, and it’s got nothing to do with will power. So what is sustainable for this person, and what does health and wellness mean to them? That’s hard for people to get their minds around, because we’re so used to saying ‘let’s fix this, let’s get the number down.’ But we’re setting up people to fail when we do that. There are physical ramifications to putting on and losing weight and it can also be incredibly damaging psychologically.

BLOOM: I’m assuming that one of the reasons doctors don’t like to talk about weight with children is that no one really knows what to recommend?

Amy McPherson: There’s very little evidence about how talking about the topic in different ways affects outcomes. In the future, we’d like to evaluate our knowledge translation casebook in different health settings to start to understand this area more.

BLOOM: What do you love about your work?

Amy McPherson:
I love designing ways to figure out what’s really important to individuals and how we can support that person to work towards that. I’m a huge fan of strengths-based approaches. What are you really good at? What are your resources and strengths? How can we support you to thrive, whatever that means to you? I’ve worked on topics like incontinence, sexuality, weight management and wellness. We just received CIHR funding for a study on solution-focused coaching for kids on health promotion goals that they set for themselves. That’s for kids with spina bifida and cerebral palsy.

BLOOM: What’s the greatest challenge of your work?

Amy McPherson: The hardest thing is to break away from the idea that health is a number and it’s just a case of eating less and moving more.

BLOOM: What emotions come with this work?

Amy McPherson: A whole mix of emotions. It’s exciting to be part of a movement that’s enhancing the field. I’m very comfortable with an approach on wellness that is individualized and means something different to each person. It compliments with my own personal philosophy that rather than ‘How can we get you to live in a smaller body?’ the question should be ‘What do you find motivating?’ A person’s best weight has been described as whatever weight a person achieves while living the healthiest lifestyle they enjoy, which I think is a lot more feasible and positive for most people.

The work is also inherently frustrating because it’s complex, and you’re trying to figure out the best way to move forward without doing damage to anybody.

The stigma around kids with disabilities and people who live in bigger bodies makes me feel very sad. And when you have the two together, it’s an intersection of multiple stigma.

BLOOM: I would like us to do more research looking at how we can help children feel comfortable in their own skin. I’ve heard of kids with amputations who wore hot, heavy prostheses for years, even though they didn’t help functionally. And then when they feel more comfortable with their bodies, they abandon them. One woman with no arms in a BBC interview described it as being her ‘independence day.’

Amy McPherson: There are huge parallels between the stigma associated with size, and the stigma associated with other body differences. Difference is not emphasized enough. For example, very often the health benefits of things like being active and eating well are overshadowed by weight loss and unrealistic body ideals. Traditionally in rehabilitation, we haven’t been so good at looking at the big stuff that matters to youth with disabilities—beyond the physical, the function, the fix. We hear that our kids in school often don’t get health and sexuality education. I’ve heard of students with disabilities being told to leave the classroom during those sessions because they don’t need it. We can do so much better.

BLOOM: If you could go back and give yourself advice when you were just starting out in this work, what would it be?

Any McPherson: You’ve got to be really tenacious. It’s a bit of a roller coaster, but you need to stick with it and stick with high standards at all times. And collaborate. That’s where the fun is—in working with other scientists, clinicians and families to come up with, if not solutions, then approaches to the things that are really important to children and families.

Monday, May 15, 2017

Kudos to Johnson's Baby for its new ad

By Louise Kinross

Johnson's Baby released a new ad that features a child with Down syndrome for Mother's Day. 

It begins with a close-up of a baby's beautiful blue eye, with the line: JOHNSON'S BABY CELEBRATE LOVE AND DIVERSITY.

Then it moves to other baby parts, the toes, chubby fingers stroke a leg, then touch the tummy, hands clasp, and we see the soft skin of the baby's back. Finally, the child's face is revealed, and he smiles. He's a baby with Down syndrome.

WITH A BABY WITH DOWN SYNDROME flashes on the screen. 

According to the Buzzfeed piece linked to above, Johnson's Baby posted the clip on Facebook with this message: "For us and for all mothers, all babies are Johnson's babies."

I love this ad. I love that it conveys the value of every child. I love that Johnson's is including babies that have been marginalized. This is a BIG deal.

I just wish they didn't have to include the child's diagnosis: WITH A BABY WITH DOWN SYNDROME.

The ad speaks for itself. The baby conveys the message of diversity. 

Would a similar ad with an African American baby say: WITH A BABY WITH BROWN SKIN?

Of course not. 

I can't wait to see what kinds of diversity Johnson's Baby brings us next. I hope this is an ongoing series designed to show us the beauty of all children.

The ad was created by Brazilian ad agency DM9.

Friday, May 12, 2017

Students run concussion rehab program for youth

By Louise Kinross

There’s little science to show how to best help youth with concussions who continue to be bothered by headaches, fatigue and dizziness.

A new research study at Holland Bloorview is testing the impact of a six-week program of education, low-intensity exercise and relaxation on 200 youth aged 10 to 18 who have concussions, most of them sport-related.

“We want to know if this active rehab approach works for kids with concussions, and, if it does, at what time points after the injury,” says co-investigator Anne Hunt.

The study design is innovative because it’s carried out by students who are clinicians in training. This includes students in their final year of occupational and physical therapy and kinesiology.

The youth with concussions first come in for a series of brain and body fitness tests. “Based on this, we prescribe an individual exercise program that has an aerobic component, like walking or riding a stationary bike, as well as up to 10 minutes of sports-specific coordination drills, and five minutes of relaxation through deep breathing or visualization,” Anne says. “We go through our Concussion and You handbook, which covers things like how to conserve energy, good sleep hygiene and tips for returning to school.”

Over the next six weeks, the youth carry out the exercise program at home and call or visit the students running the program for support. At three and six weeks they come in to have their fitness levels and health reassessed.

“Families tell us that health providers or coaches encourage the kids to push through their symptoms, or to work at a higher intensity than we do,” Anne says. “This can make their symptoms worse or slow their recovery. We teach them what it means to work at a low to moderate intensity. Ours is a very careful, methodical program. Some kids may only be able to start at two minutes of aerobics when they first come in.”

Having students run the program has many benefits. “We tell the clients participating that they’re not just helping us learn about concussion, that they’re training these students,” Anne says. “The kids tell us they love working with the students, who are younger, whereas I’m sort of more of a mother figure. All of the students come in with a wealth of experience. For one client they may need to develop sport coordination drills for volleyball, whereas another client needs dance or lacrosse drills. The students work together, given their different professional roles, to divvy up the assessments and scope of practice.”

Andi McHugh, a physiotherapy placement student, says she’s gained confidence “because we’ve been given a lot of autonomy. In other placements, you’re working more closely with your supervisor. Here, it’s more self-directed learning but with peers you can bounce ideas off.”

Tesca Andrew-Wasylik, who just finished a five-week placement in the concussion program, agrees. “Being part of a student-run clinic is such a unique experience. 
I've enjoyed the challenge of being presented with a problem and finding a way to solve it independently, while still knowing I’m being supported by my supervisors. I think it’s very successful in preparing students for the real world and reinforcing autonomous learning. I’ve learned so much about collaborative practice and family-centred care, as well as learning from the families and kids that I worked with.”

Tesca graduates this year as a physiotherapist. She's shown working with Emma, 10, in the photo above.

The research is funded by Scotiabank, and is cost-efficient because it’s implemented by students rather than staff.

Study results are expected in two years and the researchers hope they will inform best-practice guidelines on rehab for youth with concussion.

Thursday, May 11, 2017

What I consider when writing about my son

By Kari Wagner-Peck

My book Not Always Happy: An Unusual Parenting Journey comes out on May 16. Yes—I’m one of those people who finds their life experience so interesting I wrote a book about it. But first I wrote for several years on my blog about my husband, about me and mostly about our son Thorin who lives with Down syndrome.

I started the blog because I didn’t relate to much of what I was reading about Down syndrome. I didn’t fit the typical profile myself. I was 49 years old when I became a first-time mother, married to a man 14 years my junior. We adopted a boy with Down syndrome who was in foster care. I quickly realized if I wanted to read about someone like me, I would have to write it. I knew it would be funny, angry and not about how I felt about Down syndrome, but how Thorin felt about everything. About 60 per cent of the time I don’t actually write about Down syndrome. I write about us and have found that even with our quirks we are not that different than any family.

My most consistent dilemma is—is it really okay to write about Thorin? You can Google Thorin and find countless links to on-line content including photos. That thought fills me with concern and sometimes outright fear. So what over-rode my concerns to write about my son? And what restrictions do I impose? I have some thoughts.

Social justice narratives and social commentary are important

Social justice narratives and social commentary sounds stuffy, not fun and lecturing. Two things happened that made me not see them that way. When I was 12 years old two books showed up in my family’s bathroom: The Grass Is Always Greener by the Septic Tank by Erma Bombeck and Dick Gregory’s *igger. I read both within days of each other. I learned from Gregory that civil rights stories could be told in a personal, funny and sharp tone. From Bombeck I learned that the isolation of parenting in the status-conscious suburbs could be viewed in a good humored way—in spite of the fact that I was 12 and raised in a working class family.

At the beginning of this journey I justified my decision to write about Thorin because my narrative challenged existing perspectives about raising a child with a disability. I couldn’t relate to the idea of grieving a Thorin without Down syndrome. I objected to the notion that Thorin is an angel from heaven. I had no time for a laundry list of things Thorin will never do. This quote has been on my blog since day one: “I exist as I am, that is enough” from Walt Whitman’s Song of Myself. That was the premise. I told myself that by writing about Thorin I was helping to change the narrow view ascribed to all people with Down syndrome. I stick by that and I hope it is true.

Thorin is not emblematic of Down syndrome

I’m writing about Thorin to try to change a bigger world view about people with Down syndrome, but he is not a symbolic character. This one is trickier and thornier. I wrote about telling Thorin he had Down syndrome by explaining to him that he had a super power called Down syndrome and one of his powers was farting. I wanted him to know he was like everyone else.

Just days before our talk, Thorin, then 6, wore his Thor costume to the screening of the film Thor. If he loved My Pretty Pony as much as The Avengers I would have said he had a magic power and that’s likely how a Brony is created. Some mothers were reasonably upset because they assumed I was suggesting all people with Down syndrome have super powers. Some were also upset that I said farting was a super power. I should add that my husband thinks farting is a super power. Soon after I gave Thorin the genetic description of Down syndrome. He grew bored and utilized another super power by telling me to stop talking. Our original conversation would play out for years to come and in fact is the book’s epiphany.

The stories I choose to tell aren’t about Thorin’s Down syndrome but instead about who he is as an individual—his love of taking photographs, his obsession with The Avengers, his struggles with communication, his anger with being treated like a baby, his kleptomania and his storytelling abilities—take for example I Love You Eyeball Cheeseburger.

Thorin’s past is off limits

Thorin was placed in protective custody. That’s the most people know. One can assume that sort of thing doesn’t happen if a family has had a bad day, but when something harder and more tragic transpired. That information is at Thorin’s disposal when he is an adult. It isn’t for public consumption. Related to that is the fact that I want to be as respectful as possible of his biological family for Thorin’s sake. Thorin has made, for now, an evolved peace with his past that I cannot fathom, and with his “ex-mother,” as he refers to her. What I do share is the Byzantine process of state adoptions because it isn’t the typical story of family-making or even adoption. If you want a great story on how Dunkin Donuts Munchkins got us our adoption worker, you’ll have to read the book.

I do not write about my parenting frustration or wine consumption

I chose to be a parent at what is considered to be an advanced age. I didn’t expect it to be a picnic all the time or a shit show. I was grateful I had a chance to do what I had wanted for decades. My frustrations are mine. Same with all my relationships. My point of difference is not what an asshole my son is or how disappointed I am in my husband. Instead I write about my own perceptions and mistakes. I don’t find writing about parents who drink funny in general. That’s right I’m judgey. In fact I’m imperfect. I exist as I am. That’s enough.

Thorin has say in what I write about

In the early years of the blog I made those decisions for myself. Now I ask Thorin what I can write about. Consequently, I don’t write as much as I did. Lesson learned. He is a burgeoning tween—with feelings, experiences and ideas about what he does not want others to know. That’s his right and I respect it. He has crushes, but I’m not allowed to talk about on whom. He feels strongly, but I can’t always say about what. He has some ideas that are private. I’m doing a reading at a book launch party next week at a local bookstore. At first Thorin had said he wouldn’t go. When his best friend, Ella, said she wanted to attend, he said he would go but would leave while I read about him. Tonight leaving theatre class I asked, “Would you help me pick out what I read? Can I suggest stories and you decide?”


“Do you think you will go outside with Daddy?”

“I do.”

Kari Wagner-Peck is a social worker and writer who homeschools her son Thorin in Portland, Maine. You can follow her at A Typical Son.

Wednesday, May 10, 2017

Immerse yourself in disability art

The ReelAbilities Film Festival is holding its free Family Film and Art Day at Holland Bloorview on Saturday May 13 from 10 a.m. to 4 p.m.

Five films are being screened as part of ReelAbilities, which is presented by the Miles Nadal JCC. This is a great opportunity to see films about the lives, stories and art of people with disabilities and Deaf people.

There are also inclusive art activities for the whole family at Holland Bloorview and a lunch-time youth panel on arts and accessibility.

Reserve your free tickets at

Monday, May 8, 2017

Tales of kindness and contempt

By Louise Kinross

How do you think you’d be treated if you were out and about in the city and blind?

Recently I read media stories about two blind men and their commutes by subway and train in major cities.

And they couldn't be more different.

Amit Patel (photo below), a former doctor who lives in London, describes travelers who hit his guide dog Kika with umbrellas or bags, barge into Amit and complain that the pair is holding them up. He says station employees ignore him when he needs help. His dog Kika now wears a Go-Pro camera to track the public’s reactions. “Losing my sight is very lonely,” he says in this Daily Mail piece. “If I’m traveling by public transport I’m sometimes like a scared little boy sat in the corner.”

Blair Wong (photo above) is an optician who travels into Boston each day with his white cane. “I bring out the best in Bostonians,” he says in this Kind World story
I have met so many different people simply because I have a cane. It’s probably hundreds, but to me it feels like thousands.”

The story includes photos of some of 
regulars who walk with Blair or sit with him to chat on the train. A few have even become good friends.

I wondered why people would have such different reactions to a disability. We know people make snap judgments about others that are often based on false information. How might people's assumptions be different when they see Amit as opposed to Blair?

The only thing I could come up with is that carrying a cane conveys a clear message that someone is blind. Perhaps people who see Amit don’t immediately understand that his service dog acts as his eyes. Maybe he doesn’t appear 
blind”  to them.

Or perhaps, when they see a service dog, they imagine that the owner doesn’t want an offer of help? There are a number of disabled advocates on social media who write about how it annoys them when people constantly offer help.

This doesn't, of course, explain the rude comments and “tutting” Amit hears around him, or the people who hit his dog with bags and umbrellas when she’s doing her job sitting beside him on the escalator. Kika has even been kicked.

Is it possible that Boston is a more humane place than London? What do our readers think?

The top photo of Blair Wong is reprinted from Kind World. The bottom photo of Amit Patel is reprinted from the Daily Mail. Amit's wife Seema posts Go-Pro video of her husband's adventures on Twitter @Kika_GuideDog.

Friday, May 5, 2017

Tim Rose and Magnet make the job search easier

By Louise Kinross

Holland Bloorview has partnered with Magnet, an online employment platform, to bring together job-seekers with disabilities and employers.

“Job seekers register and employers build a profile and post a job, and the system uses advanced matching technology to match that job to candidates based on experience, education and qualifications,” says Tim Rose, diversity project lead at Magnet. “If LinkedIn and had a baby, it would be Magnet.” The system was developed at Ryerson University.

Today Tim met with about 15 youth with disabilities at Holland Bloorview to help them build their Magnet profiles.

“When an employer first sees a profile, they don’t see any demographic information,” Tim says. “It’s anonymized to eliminate a lot of early-stage hiring bias.”

Tim says that high school students with disabilities don’t have the same opportunities as peers to do part-time work. “Most of the jobs in that age bracket are very physical jobs,” says Tim, who has cerebral palsy. “This is what I faced. I can’t work at Starbucks or McDonald’s, so I had to look very hard to find a student job I could do physically.” Today, the rise of social media is opening up communications jobs that may be perfect for young adults who are savvy with Facebook and Twitter.

But it’s still a tough slog for young people with disabilities, he says.

“There’s a huge amount of stigma around disability and people still assume in 2017 that disability means employees who have to take more sick days and have more challenges. A lot of employers are reluctant, particularly when it comes to taking on youth who are unproven.”

Employers who do want to hire people with disabilities may not know where to find them, Tim says. “We want to change that by providing employers with a pool of highly qualified talent.”

Tim has personal experience with how challenging the job search is when disability is part of the picture. “I graduated from university with a master’s degree in human rights law,” he explains. “I was personable, outgoing and I had a whole resume of volunteer experiences. I’d started a charity right out of university and even with all of that, and with my ability to articulate well, it took me over four years to land a full-time career job.”

Tim said it was the hardest time of his life. “When you apply to something in the range of 90 to 100 jobs and you get 90 to 100 ‘no thank yous,’ it’s hard to take. I started to question what my value was as a person with a disability and I questioned whether I would ever find something.”

During this time Tim did part-time work as a research assistant and started a business called Disability Positive Consulting. “I wanted to demonstrate the asset of disability,” he says. “I firmly believe that my disability has made me a better person. It’s made me a better communicator, more adaptable, more creative. I built a business around that idea and did a lot of speaking gigs to organizations and government about this perspective. “

It was through consulting work with Ryerson that Tim learned about Magnet and landed his current position.

He has lots of advice for other young people with disabilities.

“Number one is don’t give up,” he says. “If I hadn’t had an incredibly supportive family who kept telling me not to give up, I would have, and I wouldn’t have made it. The other thing I firmly believe is that disability is an asset and you need to figure out what you’re good at and passionate about and go out there and network to connect to the types of jobs you want to be in eventually. Also, it’s okay to be frustrated. It’s okay to get annoyed at the employment situation. You shouldn’t be expected to plaster a smile on your face 24/7 when things aren’t going well.”

Teens aged 16 and up can visit Magnet ( to start their work profiles. The system is free for job-seekers and employers.

Thursday, May 4, 2017

Asha 'reshaped the way I look at the world'

By Louise Kinross

I heard this amazing interview with Ron Buliung, a professor in transportation geography at the University of Toronto Mississauga. He’s collecting data on a research project that looks at how children who use wheelchairs and walkers—and their parents—view accessibility at home and on the child’s trip to school each day. The project grew out of Ron's family's experience trying to make their front yard accessible for daughter Asha, 5, who drives an electric wheelchair. BLOOM talked with Ron about how his personal and professional life came together after his daughter was born with spinal muscular atrophy (SMA) type 2, a degenerative condition that affects the muscles.

BLOOM: Tell us a bit about Asha.

Ron Buliung: There’s a difference between how she, and we, view how she’s affected, and the clinical description that emphasizes what she can’t do. Asha’s unable to walk and never crawled, but she can sit independently. She drives herself around in a 300 lb., $26,000 electric wheelchair.

BLOOM: Oh my goodness. Have you heard about the researcher in the U.S. who adapts ride-on toys so that kids with disabilities can get moving at an earlier age? He has issues with the cost and lack of innovation in the industry.

Ron Buliung: No, I haven’t. But I agree that there’s no innovation. Why does Asha’s wheelchair have to be 300 pounds when a formula 1 race car body can be made from carbon fibre? And a lot of the technology design is medicalized. For example, Asha needs a hospital bed. But there’s no reason it has to look like a hospital bed. Many things that we need are drab and bland and dehumanized from a design perspective.

Asha’s needs are like many kids with her type of SMA—they centre around her respiratory health and mobility. She uses a BiPAP every night as a respiratory therapy to help her deal with mild apnea and to help with lung development. She has a hard time expelling secretions and had a lot of pneumonias when she was younger. In terms of the interventions she requires and the teams involved, it can mean a lot of effort and stress and sleep deprivation for us.

BLOOM: What’s she like as a kid?

Ron Buliung: She’s very, very smart. I’m kind of a bit of an introvert and she’s an extrovert. Just the other day we took our dog to the vet and Asha struck up a conversation with a stranger about cats that I wouldn’t have [initiated]. She’s always reaching out with her social skills.

BLOOM: What does she like?

Ron Buliung: She belongs to Young Voices Toronto which is a choir. She loves singing, music, art. She takes an art class on the weekend where she’s doing all kinds of painting and mixed media.

BLOOM: Does she have fine-motor issues?

Ron Buliung: SMA is degenerative, so people gradually lose some of their abilities. But right now she’s writing letters and doing what she needs to do. She’s in senior kindergarten in an elementary school that can accommodate children with physical disabilities.

What’s annoying is that her school is three-and-a-half kilometres away and we live 500 metres from the public school her sister goes to, which is totally inaccessible. It would be nice if they could be at the same school. She likes school and does well at it.

BLOOM: Is her school accessible?

Ron Buliung: They’re working toward creating more accessible spaces. Asha talks about being excluded by environmental barriers. Recently, she said there’s a concrete curb that separates part of the playground from the rest of the tarmac and she can’t get over it in her wheelchair. She knows that going on the [play] equipment won’t work for her, but she wants to be closer to the other kids. She gets pleasure out of watching kids do things. She was sad about that curb. We have to go and see what’s happening and we haven’t had time to do that yet.

She has a full-time educational assistant that she adores. But the process of getting that one-on-one is challenging. To justify the full-time EA we were told you almost need to demonstrate the need for two, in order to get one. We all know the school system is stretched extremely thin. When she first went to junior kindergarten she had a part-time EA and a bit of nursing support. But that also ended. Another weird thing was trying to figure out who can perform labour inside and outside the school. There were a lot of weird rules that can come down to the politics of labour getting in the way of the care of children.

BLOOM: What’s been the most challenging part of raising Asha?

Ron Buliung: The biggest challenge is having the help in place so we can function. For example, Asha needs to be turned over during the night, and she needs her BiPAP monitored. We have a constellation of services to help us so that we can sleep. But it takes an enormous amount of work to make that constellation function. And because there are many individuals operating within it, people drop the ball and we’re left picking up the pieces and rebuilding parts of the system. When a nurse doesn’t show up, or there isn’t a good relationship between Asha and that person, it can be very challenging.

BLOOM: You said you and your wife both work. How do you function if a night nurse cancels?

Ron Buliung: There’s a reason why they use sleep deprivation as a form of torture. Sleep is a common theme in our conversations. Even last night Asha woke up and was very upset at 4 a.m. and I went and helped the nurse with repositioning her. Within the last few weeks, two of our key nurses were allowed to go on holiday at the same time. It blows my mind, when someone’s entire job is scheduling, how we end up doing the worrying and sorting that out behind the scenes.

BLOOM: There have been a number of stories on Global about parents’ inability to get reliable night nursing for their kids.

Ron Buliung: The work of childhood disability represents a part-time job within the household. There isn’t a day that goes by when I’m not having an e-mail conversation with our nursing providers.

I’d say the hardest challenge changes over time. When we first got Asha’s diagnosis we were dealing with the shock and quite frankly, the disappointment and sadness, and the losses accumulate for everybody. No matter how you want to conceptualize exceptionalities, there are, because of the environment we live in and the systems we use and participate in, real limits. There are amazing possibilities as well, but there are also things that are very, very hard to do.

When we first got the diagnosis, my wife Tara and I would wake up in the morning and for 30 seconds we’d forget. And then we’d remember and start crying. And it wasn’t just crying—it was the worst, gut-wrenching, agonizing bawling. That went on for six months. We were given a relatively negative prognosis that Asha might not make it to kindergarten. She’s already exceeded those expectations. I believe she’s with us today and healthy and happy because we worked our asses off, quite frankly, to make sure that things are in place for her to have a good quality of life and for her health to be good. We’re on top of it, but it always feels like we’re just barely on top of it.

BLOOM: How did you move forward from those early days stuck in grief?

Ron Buliung: Time. And also, eventually you make a decision that you’re going to step up and do this and handle it and figure out what to do. I can remember coming to Holland Bloorview to get a cough-assist machine, and I thought ‘I don’t want a cough-assist machine, I don’t want any of this in my life.’

Then time moves on and you start working on health prevention and intervention, and Asha is developing and becoming a person, and you’re putting your family together and fumbling through, and it happens. You have to decide that you’re going to commit to it. That’s an important piece. You have to consciously say ‘I’m onboard to do this.’ And some people don’t. The rates of marriage failure for families who have a child with a disability are higher. But you can get support for that also.

Over time we’re getting over our grief, but you don’t ever ‘get over it.’ It is always there. We talk about anticipatory grieving and loss, particularly with something degenerative that can become acutely critical very quickly. There’s a chronic stress in your life around that.

BLOOM: What do you do to help cope with that stress?

Ron Buliung: I do a lot of biking. I’m an obsessed cyclist.

BLOOM: Do you bike to work?

Ron Buliung: Yes, I bike to Mississauga which is 30 kilometres. That takes about an hour.

BLOOM: So you’re biking two hours a day?

Ron Buliung: Yes, I do a couple of hours every day. But it’s not enough. You have to work on your mental health. Of course they’re not disconnected. You see in the medical literature that people who engage in regular physical activity are less likely to develop depression and anxiety.

BLOOM: Is there anything you’d recommend for parent mental health?

Ron Buliung: I think there’s a stigma attached to reaching out around mental health issues. I think parents should take everything they can get, whether it’s a social worker at Holland Bloorview or using their employee assistance program at work, if they’re lucky enough to have one.

In terms of challenges, accessibility is a massive challenge. From the moment of Asha’s diagnosis, we walked out of the hospital and looked around and everything looked different to me. I saw barriers everywhere. Later, just getting Asha to school involved a massive amount of work and stress to transform the front of our property so she could get from the house in her wheelchair to the school bus. The city did not make it easy. There was no box to tick to say that you needed to transform your front yard into a parking pad because there’s a child with a disability. It took two years!

In one of our initial meetings with our local councilor, she asked ‘Couldn’t you just carry her?’ My answer was: ‘She’s not a bag of groceries.’ And that totally ignored the fact that she’s going to grow and maybe she’d like to have some independence.

BLOOM: If you could change one thing in the health-care system, what would it be?

Ron Buliung: Not being able to move things forward fast enough is a chronic frustration with our family and others. Right now there’s a clinical trial for a drug therapy that’s been shown to, in some cases, get children with SMA type 1 walking. But it’s incredibly expensive—$750,000 for the first year. Health Canada is reviewing the drug in an expedited review process, but I believe they’re only looking at it for children with type 1 at the moment. Where does that leave us?

While we’re waiting for a cure, having more support available.

BLOOM: Like with night nursing?

Ron Buliung:
Yes. More reliable, regular support that is carried out with a higher degree of professionalism. When I talk about professionalism, I think a lot of families are conditioned to expect not very much. A few times we ended up keeping people around too long because we were afraid that someone was better than no one at all.

BLOOM: What’s the research you’re doing now related to accessibility?

Ron Buliung: We have 12 to 15 families and we’re doing something called photovoice ethnography of the trip to school. Children and their parents are interviewed separately, but they also take photos from their home to the lot of the child’s school. The photos are used as a cue in semi-structured interviews where parents and kids share the good, the bad and the ugly of access to education.

One of the things we want to do is indicate every institution that is involved in an aspect of the school trip. It could be an agency, the bus operator, the bus driver, the school board, the province of Ontario, the City of Toronto. We want to look at how institutions either enable or produce or reinforce disability. We’re also looking inside the home at things kids and parents see that could make things easier. They have different points of view.

BLOOM: You mentioned in your View to the U interview that before you incorporated disability issues in your research, your work was a protected space, distinct from the challenges at home.

Ron Buliung: I think my initial concern was that it might be a bit overwhelming, but I don’t have that concern anymore. I feel I have this position of privilege and maybe I’m in this position for a reason. I’d like to use it to do work that’s meaningful for me and helpful to others. I teach a course in transportation geography and I’m able to bring something to those courses in a way I hadn’t before.

I’m also plugged in to the regional community of planners and government planning for active and sustainable school transportation. I wrote a series of studies on childhood disability and transport and they had a conversation about how disability can be plugged into what we define as active school transportation. They were thinking about walking and cycling. They weren’t thinking about kids wheeling or other ways of getting there. I can engage policy makers around this stuff, so our kids don’t get excluded from site planning for new schools.

BLOOM: You said that you used to teach a course that included some content on accessibility before Asha was born.

Ron Buliung:
I did. But I couldn’t relate to the content in the way I do now. I’ve always been interested in social difference and mobility, but I hadn’t plugged disability into that interest, which was a shortcoming of my own. I was naïve and unable to meaningfully connect with the subject.

Asha is one of my greatest teachers. She reshaped the way I look at the world and that’s a huge privilege.

In my graduate research group, two of my PhD students are working on disability and accessibility. They wouldn’t be doing that without Asha. Asha is the motivation and inspiration for all of this work.

Wednesday, April 26, 2017

School volunteer honours his daughter's memory

By Louise Kinross

I first met Yoonus Mia in 2003. I’d bump into him in the hospital walking beside a child in a helmet, feet strapped onto the pedals of an adapted bike. He was a volunteer in the Bloorview school. He was also a retired elementary school teacher and principal. We talked about what’s kept him coming back to work with Bloorview students for 14 years.

BLOOM: You started off with kids in the integrated education and therapy classes. What did you do?

Yoonus Mia: I was with the very little kids and we did everything from helping them in the classroom to helping feed them a snack. A highlight was helping them achieve whatever they could with the bikes. They would practise while we talked to them and showed them things in the hospital. Some of the kids were very vocal. That was a big lesson. I had to pack my assumptions in a bag. These children can do all kinds of things, but you have to have the patience and the time to do it.

BLOOM: Now you’re working in a class with children with complex disabilities.

Yoonus Mia: Every day is a challenge learning how to work with different students. Some days I’ll be doing math with a student and other days I’m encouraging a child to touch things or doing hand-over-hand painting.

BLOOM: Some of the children don’t speak.

Yoonus Mia: They communicate by letting you know what they want with a look on their face or a nod or a wink.

BLOOM: You had a daughter who came to Holland Bloorview.

Yoonus Mia: That’s the real connection, but because I become a little more emotional about these things, I tend not to mention that. My daughter Anisa was disabled as well. She came to what was the Hugh MacMillan site for respite care, and she was fitted for orthotics and a special seat for her wheelchair. Anisa passed away when she was 16. We cared for her the best way we could.

Sometimes I think back and wonder, could we have done things differently now? With modern technology a lot more options are available. Knowing this place through my daughter was my motivation to volunteer. I started about six months after I retired. It was a chance for me to give back and it helps me as well.

BLOOM: Can you tell us a bit about Anisa?

Yoonus Mia: She had cerebral palsy. She also didn’t speak. But we knew exactly what she wanted. There were ways she would communicate with us that she was tired or hungry. She went to school every day. She enjoyed going out for drives and she enjoyed music. Sometimes she wasn’t well because of seizures. We have another daughter, Nadia, who was younger, and we cherish fond family memories of our time with Anisa. We did our best and it was great to have her in our life.

BLOOM: It sounds like she changed your life in many positive ways.

Yoonus Mia: Yes, we are connected to our past and connected to all sorts of things. Anisa used to receive care at a recreation program at Columbus Centre run by Barb Germon, who is a social worker who works at Holland Bloorview now.

Sometimes volunteering here makes it more difficult for me, because I think of my child. But I don’t carry it on my sleeve. I sense something about these children who are so vulnerable, and it’s rare to have a school like Bloorview. This is my small way of giving back.

BLOOM: What do you get out of your time with our students?

Yoonus Mia: It’s the little things you have to watch for, and that I’m fascinated with. When you’re with the same student for several weeks you suddenly notice growth: Oh, he can do this now. When a child looks at you and smiles to say ‘I get it, I can do this,’ that’s the real treat and benefit of being around. In this program every little thing counts.

BLOOM: It sounds like you’ve adopted this as a philosophy.

Yoonus Mia: That’s what it’s all about. One of the other benefits is I met my friend Peter Sandiford, and we have lunch together. Peter is a nice man.

BLOOM: We just had a celebration for Peter’s 80th birthday, to recognize the many years he’s volunteered here, and I learned all kinds of interesting things about him.

Yoonus Mia: He was a photographer, though he isn’t able to do that anymore. He’s another example of someone with all of these challenges, but he enjoys life the best way he can. When I come on Tuesdays I’m exposed to Peter and the children and it helps me.

Learn more about Holland Bloorview’s volunteer program.

Community keeps this volunteer coming back

By Louise Kinross

After her daughter Elizabeth was diagnosed with global developmental delay, Jean Hammond immersed herself at Holland Bloorview as a family leader.

The former advertising exec has co-chaired our family advisory, sat on hospital committees, helped hire staff and plan an annual recreation fair, educated medical students about what matters to families, and hosted coffee nights that give our inpatient parents a break and a sweet treat.

This month Jean’s efforts were recognized with a 2017 Volunteer Service Award from Ontario Premier Kathleen Wynne.

“I find being here and volunteering and spending time with other parents going through similar stuff is therapy for me,” Jean says. “The best thing of all is the community and the people I’ve met—both staff and parents. They help me feel like I'm not going through this alone. I’ve learned so much that’s affected the way I’ve been a caregiver to Elizabeth.”

Jean says one of the first things she learned at our family advisory was about fun things her daughter could do. 

“Chatting with other parents before and after our meetings gave me tons of great information about what other kids were doing, Jean recalls. I was navigating what activities there were for Elizabeth to do outside of school. None of what my son was doing seemed to work. Holland Bloorview became my hub for that. Elizabeth has done every camp the hospital has going, from Spiral Garden to Life Skills to a sleep-away camp. 

“I remember coming for an information session on the Out and About camp and being handed a stack of waivers for activities like rock climbing, dragon-boat racing and going up in a glider. I thought holy cow, this is so cool. I learned that Holland Bloorview’s philosophy is to expose kids to a huge array of activities and, as a result, Elizabeth has become more confident and is enthusiastic about trying new things.”

Now Jean shares what she’s learned about adapted activities when she helps our Life Skills team plan an annual recreation fair for families. “It’s like a mini trade show and I get to connect with so many parents who are just at the beginning of learning what’s available. I love guiding them through, and telling them what I’ve found helpful.”

Jean says one of her favourite volunteer gigs is sitting on the quality committee of the hospital’s board. “It’s a big responsibility, but I love it because it’s proof that the hospital is walking the talk by including the family voice at a very high, decision-making level. I try to speak up and channel the concerns of other parents.”

Jean says her work as a family leader gave her a focus after she left her job in advertising to coordinate Elizabeth’s care. “Volunteering was a way to keep my brain from atrophying and a way for me to feel like I still had my hand in the game.”

Jean used her marketing experience when she helped the hospital’s foundation develop its successful Capes for Kids fundraiser. “I was in the room when we brainstormed what the fundraiser would be, and then helped on aspects of its roll-out.”

She says her work at the hospital led her to recognize that when she returns to paid work, it will be in a different field. “I won’t be going back to the world of advertising. I have to work in something that I genuinely care about.”

Jean encourages other parents to consider becoming a family leader. “As a family, you have something that only you can contribute
—your voice and your lived experience. It’s so meaningful to see the difference you can make in policies and other changes in the hospital.

Jean says the parents she’s met at Holland Bloorview have become her “peeps. We share information and we go out for a glass of wine and a crazy laugh, because nobody else would find some of this stuff funny.”

Learn more about our Family Leadership Program.

Tuesday, April 25, 2017

Instead of changing her child, a mother changes herself

By Louise Kinross

Superbabies Don't Cry is a brilliant essay about how the birth of a child with a chromosome deletion upended one mother's ideas about perfection and our ability to control life.

It's written by Heather Kirn Lanier. She blogs about her daughter Fiona (centre above) at Star In Her Eye

Here are some of my favourite lines. "With my woo-woo belief that the mind could control the body, I'd pushed disability away. I'd done this by subscribing to the belief that disability always had an avoidable cause. I'd believed I could control the body because I could not stomach the truth: that the body is fragile, ephemeral."

"If you buy into a false narrative that the body is controllable, that illness can always be prevented, then my proxy you are left with a disturbing, damaging, erroneous conclusion: the belief that a person's disability is their fault."

"The world is a terrifying place. We manage it by believing we can control it. And when it hasn't been controlledwhen it doesn't bend to our willswe either look for something to blame, or we surrender."

Heather's essay is about how she's let go of trying to change her daughter Fiona's disabilities. Instead, she opens her mind to the idea that fragility and pain are essential parts of humanity. This is a must-read.

Thursday, April 20, 2017

'Care for the family shouldn't stop when the child dies'

By Louise Kinross

When Bruno Geremia’s son Matthew died two years ago, Bruno's sense of loss extended to the people he knew at Holland Bloorview during Matthew’s life.

“When you lose your child, you also lose your care team and the community at Holland Bloorview,” says Bruno (centre, with wife Marlene right and family leader Vivian Low left).

“When you walk through the door for the first time after, there's a sense that you don’t belong anymore. We live in a culture that doesn’t want to talk about death, especially if your child is really complex or fragile.”

Bruno and other parents want to change that.

They’re working with Holland Bloorview staff to create an annual celebration of life event and other supports.

The first event will take place in Spiral Garden on June 11. It’s for Holland Bloorview families whose child has died in the last two years. There will be photographs of the children, fun activities for the whole family, and the dedication of a piece of art. “We’re working with Spiral Garden staff to create a butterfly that will honour the children,” Vivian says. Her son Ethan died almost 10 years ago. “The plan going forward is that every year we will have the celebration and install a new piece of art.” The parents also hope to have a dedicated art work inside the hospital.

Vivian recalls that after her son died, “there was no support besides Bereaved Families of Ontario. But it’s in the community, and you have to retell your story to strangers.”

Families feel cut off from “the people who know the road we’ve travelled, and who knew our child,” Bruno says. “We believe it shouldn’t end like that.”

Bruno and Vivian, who are both members of Holland Bloorview’s family advisory, say the group has been an important ongoing connection for them. “I was lucky because June Chiu called and said ‘I hope you’ll come back and be part of the family advisory,’ Vivian says. “Sometimes it was hard, and I’d feel a little like a fraud, like my child isn’t going to any of the clinics, maybe I shouldn’t be here? There’s a fear of being an outsider.”

But Vivian says she was welcomed back. “When your child dies, you get the feeling that nobody else understands, and they can’t. That’s why it’s so important to talk to someone with the same experience, who knows what it feels like to live through that. I had June, and then Bruno and Marlene, to talk to.” Too often, Vivian says, Holland Bloorview families “don’t have that opportunity.”

To remedy this, the parents plan to set up coffee talks a couple of times a year where parents meet at Holland Bloorview to remember their kids and share support. “We’d also like to look at supporting siblings,” Vivian says. “For us, that was a huge gap when parents are struggling themselves.”

Bruno says his continued participation on Holland Bloorview’s family advisory “is a tribute to Matthew’s life. Before Matthew died, I didn’t think I’d be strong enough to do that. But after, I thought, everything I’ve learned, I’ve learned because of Matthew. This keeps him alive.”

Vivian agrees. “We’re a voice for our children and the needs of our families. Our children keep us connected to Holland Bloorview and we honour them by staying involved.

Bruno and Vivian shared these reflections that may be helpful to other parents whose child has died:
  • There is no road map for grief, no time line or 12 steps. It’s individual, and you have to accept that your journey is going to be that way. It will change from day to day and year to year.
  • Anniversaries, especially in the first year after your child dies, are very hard.
  • Grief can ambush you when you’re least expecting it.
  • Talking to other parents who’ve lost a child is soothing. You don’t have to explain anything, and if you fall apart, it’s okay.
  • Counselling helps.
  • Find ways to honour your child. Vivian’s family raised money for a multi-sensory room in the school her son went to, and where her daughter still attends. Bruno’s family participates in the Hike for Hospice to make people aware of the amazing care they received at Emily’s House.
Advanced care planning with a palliative care team can help families build beautiful memories with their child. “We spend so much time going to appointments, doing therapy, and for the more complex kids, just feeding them, that we don’t get to have family time,” Vivian says. “We need to be encouraged to not feel guilty about putting that aside, so we can have fun times as a family.” Bruno notes that his family cherished Thanksgiving, Christmas, birthday and Easter celebrations with Matthew while he lived at Emily’s House.

Most important, “Care for the family shouldn’t stop when the child dies,” Bruno says. “If we are family-centred, we need to continue to provide care to the family that has to go on.”

Bruno and Vivian say social workers, nurse practitioners and senior managers at Holland Bloorview are eager to participate. The other parent on the celebration of life committee is Cheryl Runstedler. You can read about Cheryl and her son Jordan here. To learn more about the June event, e-mail social worker Barb Germon at