BLOOM becomes part of Holland Bloorview's new website

By Louise Kinross

Holland Bloorview is launching a new website at the end of August, and BLOOM will be a part of it!

Rather than standing alone, BLOOM will be integrated into one site with the hospital and our research institute and foundation.

The new website has been designed with input from children and families. It features gorgeous, large images, as you can see in the screen shot above, is much easier to read and has enhanced accessibility.

Visitors will be able to translate our pages into 100 languages, share our content on social media with the press of a button, and sign up for our hospital and BLOOM e-letters.

As of August 21, you will be redirected from our old site to the new site. 

Once live, we'll share more details on how you can give us feedback on our new look.

In the future, you can always find us at www.hollandbloorview.ca/bloom.

Read More

Click click. Dress your chair with stylish, snap-on accessories

By Louise Kinross

It’s a bit of bling for the wheelchair, and security and control for the user.

Lucy Jones—named one of the world’s brightest entrepreneurs by Forbes magazine in 2016 for designing clothes for people who use wheelchairs—launches a new line of wheelchair accessories today in New York City.

A small US$49 metal clamp with a dock that fits on manual wheelchair tubing is being sold with two leather clutch bags and a cupholder that attach with magnets. It allows you to snap and secure a bag or cupholder to your wheelchair.

The smaller bag—available in electric blue, hot pink, tangerine, yellow and black—is perfect for credit cards, keys, a phone and cash. It costs US$108. The slightly larger black bag is made for people who want to carry more makeup, or other stuff, close by. It goes for US$138. Check them out in this video.

“In focus groups, people were often telling us that they were sitting on their phone or wallet or keys, because they had nowhere safe to put them,” says Lucy, whose new company is called FFORA. “That could cause pressure sores.” 

Other people carried things openly in their lap. Lucy recalls that one of her friends, who has multiple sclerosis, used to ask her to go into her bag, which was hanging on the back of her chair, to get things. “I often wondered, ‘How is this safe?’ The community wanted fashionable bags, but they often had to jury-rig them, or hack them, so that they fit on their chairs.” 

Lucy says it was a challenge to make a clamp that was light, sturdy and small, and something people would want to leave on their wheelchair. Early users say the product, which comes in champagne, silver and midnight black, “looks like a piece of jewellery.”

When attached, the dock swivels at 360 degrees, so users can position it in a way that doesn’t interfere with their movement. “It can go anywhere along the lower wheelchair tubes. We have one guy who places it behind his leg, and others who have it up high beside their knee cap facing forward, and others who position it outward.”

Lucy, and her team at FFORA, had to create a product that would work with seven different wheelchair tube sizes. “We’ve created seven different silicone inserts,” she says. “On our website, the customer will check their wheelchair model and brand, and when the product is shipped, it already fits their chair.” 

About a dozen wheelchair users aged 22 to over 60 trialled the products for a week at a time, then came back to review what worked and what needed tweaking. “One of their biggest asks was that we make something that was functional and easy-to-use but also cool and stylish, something that their sister or mom might want to use too,” Lucy says. “If you don’t have a disability, and love the bag, you can wear it across your body with a strap. These bags are competing with the rest of the small leather bags market.”

Also in the line is a US$25 cup holder that fits in the wheelchair dock—so you can take your coffee with you, and not worry about spills.

The new line only ships in the United States, but FFORA hopes to expand to Canada and Europe in the next year. Lucy and her team are working on ideas for products targeted to kids. “Imagine Disney or Marvel. Imagine if we could get a license, so a child could have their super hero character in a cup design?” Plans are in the works to create an attachment that fits on electric wheelchairs and scooters too.

In 2016, BLOOM interviewed Lucy about her clothing collection called Seated Design for wheelchair users. She developed it as a graduate student at the Parsons School of Design in New York.

Lucy says she named her new company FFORA to recognize all of the wheelchair users she’s worked with. “When we had focus groups, it felt like this was a real honest place where people could make their opinion heard,” she says. “It was a forum. I didn’t like the word ‘forum,’ so I changed it to fora, which is the plural of forum. Then I added the double F, purely for selfish reasons. I’m Welsh, and I wanted to make the word look Welsh. In Wales, there are a lot of double Fs that make the ‘F’ sound. I thought it would be unique. Now we think of the two Fs as symbolizing fashion and function, or form and function, and being future-forward.”

Read More

'Foolishness' plays a critical role in rehab

By Louise Kinross

The ‘fool’ in Shakespeare’s plays and the ‘trickster’ in Indigenous stories held an important role in upending the status quo. A Holland Bloorview paper published this week in the Journal of Medical Humanities notes that the foolishness of therapeutic clowns—their emotional vulnerability and willingness to fail—is at the heart of their work with hospitalized children, producing a ‘joy without demands.’ Clown practices, however, are often seen as ‘secondary to the real work of medical professionals,’ and devalued.

Lead author Julia Gray, a post-doctoral fellow at Holland Bloorview, argues that all clinicians and researchers could benefit from embracing aspects of foolishness in their own work. BLOOM interviewed Julia about the paper, called Seriously Foolish and Foolishly Serious. It looks at how clowning creates a space of vulnerability, surprise and the unknown in which children feel agency, as well as the freedom to express sadness, despair, pain and delight. This spontaneous, undirected, flexible practice isn't usually taken seriously in a medical world grounded in science, expert knowledge and quantifiable outcomes.

BLOOM: Why was there a need for this paper?

Julia Gray: It came out of things I was observing anecdotally about the clowns’ role at Holland Bloorview, and in other hospitals, and reading in academic literature about how clown practice is framed. I was seeing a strange tension between admiration for the clowns and an attempt to legitimize them by framing them as a medical practice. They had to have certain kinds of medical goals, or be supporting the medical goal of other professionals.

As an artist and scholar myself, it seemed such an odd way to try to legitimize what they do. The arts do things that may complement medical goals, but they also do other things: they help us be in the world, they help us feel things, they help us see things differently, and they help us see ourselves differently. Those [experiences] are really important in a health setting, but they tend to be overlooked generally, in practice and in research.

BLOOM: What kind of knowledge has traditionally been valued in children’s rehab?

Julia Gray: Science tends to be valued, and particular kinds of science—objective research.

BLOOM: So quantitative over qualitative research. You also wrote about “high knowledge.”

Julia Gray: Yes. It’s quantifiable, an intellectual prowess that is valued, reasoning. It comes out of the Enlightenment, and the roots of scientific method are revolutionary and incredibly important. But when you value that over other ways of being or knowing, it has the potential to exclude people who may have different abilities and strengths.

BLOOM: You wrote about how foolishness is central to the role of the clown. Why is emotional vulnerability, and a willingness to fail, important to hospitalized children?

Julia Gray: Our rehab practices are continually encouraging them to be independent, and that independence is where strength is, as opposed to being vulnerable. They’re supported to be a certain kind of ‘strong.’ That has implications for how children with disabilities see themselves. Some of them are never going to fit that mould.

Rather than pushing children to fit a particular mould that we understand to be success, we need to think more about what ‘that success’ is? At a philosophical level, it asks us to question what it means to be a human being. Is being independent and self-sufficient valued, above all else? Is it holding down a particular kind of job that makes more money? Or is being playful and joyful enough?

BLOOM: One of your co-authors, Barbara Gibson, is a physiotherapist, which is a more traditional clinical role in children’s rehab. As authors, you note that typically, play in children’s rehab is not an end in itself. It’s always tied to a therapy goal or achieving a developmental milestone. Why is this problematic?

Julia Gray: I think it comes back to what does it mean to be human? Is it not enough to play? Why do we need to use play to control development and decide what is 'normal' or 'abnormal' play? I sometimes think medical culture gets it backwards. These artistic therapies and practices are seen as a way to fix people, rather than as a way to support kids, so they can be in the world as themselves.

BLOOM: That approach can also take all of the joy out of life. I remember when every interaction I had with my young son had an agenda—I was trying to get something out of him, rather than enjoying the moment. And if I wasn’t successful, I felt like a failure.

Julia Gray: There’s this pressure to always be better, but we don’t question what better is.

BLOOM: What if better is happier, and has nothing to do with abilities?

Julia Gray: What if better is chilling out in a bath?

BLOOM: You note in the paper that hospital clowns are often misunderstood. People think they provide simple laughs or positivity, when what they do is actually very sophisticated. You include an example of an interaction between a nine-year-old patient, Daniel, and Helen Donnelly, a co-author, who is a therapeutic clown at Holland Bloorview known as Dr. Flap.

Daniel, who uses a ventilator, accuses Dr. Flap of lying about the death of Jamie Burnett, who was a therapeutic clown at Holland Bloorview. He worked with Dr. Flap until he died of a brain tumour in 2011. Why did you choose that example?

Julia Gray: I wanted to show how the child drives the boat, and Helen really follows his lead. Helen doesn’t balk at what he’s putting forward, when he challenges her. It’s really brave for a child to challenge an adult, and accuse her of lying. She doesn’t try to take control by saying ‘No, no, I’m a serious adult. I know what’s best.’ She follows his play, and lets him lead. She makes herself very vulnerable. She recognizes the importance of not always talking and being clever and being in control.

BLOOM: You write about how fool-like characters historically played an important role in challenging the status quo. You also share examples of how scientists and research students, here and in other rehab facilities, reacted to learning you were researching clowns. They felt uncomfortable and hesitant. In fact, one colleague said she was afraid that if she encountered the clowns, they might make a fool of her. Can you explain?

Julia Gray: Our culture really values high intellect, certain kinds of expertise, and being in control, and the clowns do not offer that. They are constantly playing low status. They relish in being ridiculous and weak and failing all over the place.

That kind of exposes the ridiculousness of how seriously people take intellectual control. It has a place, and we have discovered all kinds of amazing things. But even in science, you need creativity, and there’s so much ‘not-knowing.’ It’s ironic that people get nervous around the uncertainty and not-knowing that the clowns bring.

BLOOM: That’s so interesting, because now I think about it, I remember a couple of times I was having a bad day, and I saw the clowns in the hall, and thought: ‘Oh no, I hope they don’t see me. What if they engage me, and I don’t know what to say? What if I don’t understand the characters they’re playing? What if I can’t say anything, or be cool?’

Julia Gray: People think they need to be funny, and that it’s about wit and intellect. It’s not. It’s about imaginative play, and you don’t have to know anything. You don’t have to know.

BLOOM: How does our focus on science and high intelligence and professional expertise potentially impede creativity and more flexible ways of thinking about disability?

Julia Gray: When there’s an emphasis on a particular kind of knowledge as being more valued, it delegitimizes another kind of knowledge, which comes from people’s experiences and feelings and emotions and senses. For example, clients are constantly being asked to articulate their goals in rehab, but only in certain ways. We say we’re being client-centred, and doing what the client wants. But we expect them to articulate those goals in a way that fits with a world where independence and productivity are valued.

BLOOM: There was an interesting quote related to that in your paper. 'Rehabilitation functions in tandem with efforts at home, school, and community to secure children’s futures as productive, contributing, autonomous and ‘normal’ adults.' I’ve always said that in mainstream childhood, parents don’t talk to their children about goals. It’s a clinical concept.

Julia Gray: I never sit down with my able-bodied kids and talk about what their goals are for their own bodies. I tell them to go outside and play. When a parent is trying to get a child to do things that will make them more 'productive,' it shapes the whole relationship. This opens up questions about what the purpose of rehab is? When we value independence and expertise over other ways of being, it influences our practice. Could we support kids to be who they are in a variety of ways?

BLOOM: There’s a brilliant line in your paper that I want to read. ‘There is little room in the serious scientific aspirations of contemporary rehabilitation practice and research for risking failure through creative experimentation, promoting pleasure, supporting alternative ways of being and doing, particularizing care, and/or thinking about people differently.’

I read that, and I thought: That’s why we don’t do more research on really complex populations. For example, we usually study youth with disabilities who are employable in conventional ways. Why don’t we research youth who will live unconventional futures, and who won't be able to do paid work? What do they do? What kind of a good life is possible for those people? I think we don’t go there because we don’t want to enter into a field where we don’t know the answers. We don’t know how things are going to look.

Julia Gray: And it probably won’t show what we consider productivity to be. We’re more comfortable celebrating certain kinds of successes, but what do we mean by success? We’re in a time where we have to account for every dollar spent, and if there’s money going to help kids be successful in particular ways, we have to account for that. If they’re successful in other ways, you can imagine people saying ‘But how is that going to help the economy?’ All of this is situated in our larger culture and its expectations. Those expectations really limit us, because we don’t critique what we even mean by success or improvement. Why do we need to improve?

BLOOM: Maybe a goal for a child is acceptance, so they feel good about themselves. Your paper resonated with me because I’ve felt a lot of discomfort with how we promote the academic exclusivity, or high intelligence, of our research work. How does that fit with our vision of inclusion?

Julia Gray: We are heavily academically inclined. We are measuring particular kinds of successes and experiences—largely through marks.

BLOOM: Yet some of our population, due to intellectual disability, can’t be successful in academics. You suggest that all rehab clinicians and researchers can enhance their practice by incorporating foolishness into it. What might that look like?

Julia Gray: My son used to take violin when he was 6, and one day, after about five sessions, he showed up and said ‘I don’t want to be here,’ even though he was the one who'd asked to take lessons. The teacher said ‘Okay, maybe we don’t need to practise bows and techniques. Why did you decide you wanted to take the violin?’ 

He said he thought it was a cool instrument. She said ‘Let’s take a look at the instrument,’ and that’s what they did for half an hour. They talked about the different parts of it, without playing it. If the teacher had had in her brain ‘I must teach technique and I have these goals,’ she would have pushed him away and he would have been even more annoyed. She knew that her relationship with him, and with music, was more important than holding the bow in the correct way.

BLOOM: One of the messages in your conclusion is that relationships, and activities that spark happiness, in the moment, with children, are as important as clinical outcomes.

Julia Gray: Therapy and physical function, and relief from pain, are incredibly important, and have a very important place. But it's also important to think about why we focus so much on improving in rehab? What are we improving? What is our understanding of betterment? Why do clinical outcomes take priority over a child being in a good way with a person in a space—being in a good relationship? Isn’t that, really, what life is all about?

BLOOM: What do you hope professionals take from your paper?

Julia Gray: I appreciate they’re in a tough position. We’re in a culture where the pressure is to be ‘better.’ That, according to the funding, is the point. They need to be able to show particular outcomes to justify their practice. Many feel very torn about existing within that structure that pushes them to practise in particular ways—ways that may sometimes be harmful. I don’t know what the answer is. I think we need to rethink what we value. What is valued as ‘better?’ What is valued as ‘improvement?’

BLOOM: What message do you hope parents take?

Julia Gray: To recognize that therapy, or betterment, or improvement goals or practices, can be totally overwhelming, and overtake your relationship with your child. Maybe there are ways to resist that by just being. And playing. Being silly, and sitting in the sun. Try to prioritize that, and remember that the parent and child being together is enough—as opposed to the parent being the fixer.

Read More

Diverse dolls help children 'appreciate themselves as they are'

By Louise Kinross

Winnie Mak is part of a multicultural family. She is Chinese, from Hong Kong, and her husband Rafael is French and Greek. They live in London, U.K., and after their son Alex, now 4, was born, Winnie learned that the vast majority of dolls were white, girls and able-bodied.

She wanted to create soft dolls targeted to boys and girls that “reflect the diversity of the world.” So she launched One Dear World with four dolls that represent children from Ghana, Mumbai, Norway and Hong Kong. This fall she's adding six new dolls that have disabilities (including the boy doll with Down syndrome, above. Scroll down to see the five others).

“Each doll has an identity and comes with a story, and can be used as a tool to help children build a positive self-image and a respect for each other’s differences,” she says. 

BLOOM: Why did you decide to create dolls with disabilities?

Winnie Mak: When I first launched the company I wanted to include all kinds of diversity. But I decided to start with cultural diversity, because I was just one person starting the company at the dining room table.

Last summer my story got featured on BBC, and I got some messages from parents asking for dolls with disabilities. For example, one mother who had a daughter with Down syndrome wanted me to consider creating dolls with Down syndrome. I contacted different charities in London and messaged with parents of children with disabilities through Instagram, and I found them very welcoming to my idea, and willing to have a chat with me. That gave me the confidence to think this was something I should try.

BLOOM: How did you choose which conditions to include?

Winnie Mak: I wanted to show a range of visible and non-visible disabilities. My nephew had been diagnosed with autism, so I had become more knowledgeable about that. There’s a doll with autism, a doll with an amputation, a doll with Down syndrome, a wheelchair user, and dolls with visual and hearing impairment.

I was speaking with a consultant in London who gives advice to big corporations on disability policy, and she mentioned that mental [illness] has been classified as a disability. One of my dolls has anxiety. I think young children should learn about mental health and wellbeing.

BLOOM: How are the disabilities conveyed?

Winnie Mak: The doll with hearing loss has a pink hearing aid. The doll with vision impairment is wearing glasses and has a guiding cane. When I was designing the doll with Down syndrome, I met with some family support groups to get feedback on the facial features. I wanted things to be subtle, not exaggerated.

Each doll comes with a booklet which gives their name, place of birth and a short story about themselves. For example, one doll is Irish and she’s experiencing anxiety after she learns that her parents are getting separated. She finds she likes hiking and drawing, and these two activities give her some peace of mind and help with her anxiety.

Each doll has a hero. The role model of the doll whose right leg was amputated after a car accident is Sudha Chandran, an amputee and also a famous Indian dancer. The booklet also has a section called ‘Do you know?’ about the doll’s disability. 

BLOOM: I know Barbie just introduced a black doll who uses a wheelchair, and American Girl has dolls that come with accessories like hearing aids. What makes yours different?

Winnie Mak: What makes my brand unique is that each doll comes with a story, which is a guide for parents or educators to start the conversation about differences. My plan is to develop more stories and content around the doll characters. For example, if I exceed my crowdfunding target, I will write a story that includes all of the dolls, or create a card game that can be played with the dolls. The mission of my company is to nurture future global citizens.

BLOOM: What message do you hope the dolls give children?

Winnie Mak: For children with disabilities, my message is that there are people like them, and they’re not alone. We want all children to grow up having a secure self-image, and appreciating themselves as they are.

I want non-disabled children to learn about disabilities and embrace differences. My son is of the age where he’s very interested in dinosaurs. There are so many dinosaurs and they have difficult to pronounce names, and lots of different features, like running speed. My message is that if young children can learn about all of these complicated dinosaurs, and remember all of the names of the Pokemon monsters, there’s no reason they can’t learn about different disabilities.

BLOOM: How do you make the dolls?

Winnie Mak: I’m not a doll maker myself. I started with some sketches in a notebook and then did a digital drawing on the computer. I’m originally from Hong Kong and used to travel a lot to China when I worked for an electronics manufacturing company. I found a doll-making factory there that is helping me develop the six new dolls.

BLOOM: What ages are they targeted to?

Winnie Mak: Because they are cuddly and soft, they are targeted to children from one to two years old, up to five to six years old.

BLOOM: What do the dolls cost?

Winnie Mak: The new dolls will cost between $40 and $50, because they are more detailed than my first dolls, and more resources were put into developing the booklets that come with them. For each doll sold, 10 per cent of sales will go back to a charity that supports that particular disability. For example, the dolls with visual impairment will support Sightsavers. They work in some of the poorest parts of the world to prevent avoidable blindness and to promote disability rights.

Winnie’s new dolls will be launched in early September through a crowdfunding campaign. You can sign up for more information here. They will be shipped internationally. The wheelchair below comes separately, and can be used for play with any of the dolls.

Read More

Spiral Garden means freedom, creativity and time together

By Louise Kinross

This summer is bittersweet for brothers Osmond (above right) and Edmond Shen (left).

That’s because it’s the last one they’ll spend together in Spiral Garden.

Osmond, who is 21, has been attending the artist-run camp in the ravine behind Holland Bloorview since he was five, and is graduating out of the program. Edmond, now nine, has been coming for four years.

The camp brings children with and without disabilities together under a canopy of trees to tend an accessible garden, sculpt clay, work wood, make puppets and tell stories.

Each brother has a different passion. For Edmond, it’s gardening. “You get to water plants and help,” he says.

For Osmond, it’s woodworking. Osmond envisions finished products—like a stand for his Nintendo DS, a wheelchair cup holder or a robot—and directs Edmond in how to execute them. “A lot of youth come for an hour and go, but Osmond is determined to stay until his project is finished,” says Brendan Byrne, one of the counsellors.

On the day we met, Osmond had Edmond sawing a thick branch into small circular pieces to form the four wheels he wanted on his robot. “He’s the boss,” Edmond says.

“What I like about this camp is that it teaches ‘normal’ kids about disabilities,” Osmond says. He and Edmond also appreciate the open schedule. “You can go anywhere you want, and do anything you like,” Edmond says. “At my other camp, we had a schedule, and we had to do this, then this, then this.”

Edmond says one of his favourite parts of camp is going to the hospital cafeteria for lunch. “Osmond takes me for lunch, and I get to have a hot lunch.”

Osmond encourages other families to send their child with a disability with his or her brothers and sisters. “It’s a great opportunity for siblings,” he says.

The camp, which welcomes over 200 children and youth each summer, is donor-funded through our foundation.

The photo below is of Osmond and Edmond enjoying their first summer at Spiral Garden.

Read More

'I open up a world for kids to be able to participate in'

By Louise Kinross

I have a strong image of Laurel Robinson (standing above), a speech-language pathologist at Holland Bloorview. Laurel is always racing up the path to the hospital, or back down to the parking lot, pulling a cart on wheels behind her. The cart is packed with alphabet boards, picture displays, photos and technology she uses to create a way for children who don’t speak to communicate. Laurel, who is usually on the road driving to client's homes or schools, is always warm and bubbly. What I didn’t know about her is that she was born in Montreal, grew up in Saskatchewan, and studied in Alberta. She's also a sign-language interpreter and was a competitive synchronized skater growing up. We talked about her work at Holland Bloorview.

BLOOM: How did you get into this field?

Laurel Robinson: I started in pre-medicine. I knew I wanted to work with children. Then I watched a Monday night movie with my mom about a child who was non-verbal and used facilitated communication. It was a child who had been abused, and was in court. I didn’t know what alternative and augmentative communication (AAC) was, but I knew I wanted to do it. I did an honours in linguistics, and a major in psychology, to get into the speech and language pathology program in Alberta.

Before I began university I used to skate, but then I had surgery on my knee, so I had to stop. I decided to take some sign language courses instead, and I met the Deaf instructor, who worked at the University of Regina. I wanted to learn more, and we began meeting for lunch. I got immersed in the culture, because she introduced me to Regina’s Deaf community. While I was waiting to get into my master’s program to be a speech and language pathologist, I did the two-year American Sign Language program. The friends I’ve made through the Deaf community are my long-time friends.

BLOOM: My son primarily uses sign to communicate. It was our developmental pediatrician at Holland Bloorview who first suggested it. It’s always bothered me that sign-language instructors aren't part of the children's rehab model.

Laurel Robinson: It’s the medical model we all live in. Several years ago, I inquired here about whether we could bring on a teacher of American Sign Language, when the daycare at the Bob Rumball Centre for the Deaf was closing. I felt it was a piece that was lacking for our clients, especially in the school here. I wanted to connect and make courses for adults and parents who had children with disabilities who signed.

One of the biggest myths in our own profession is that technology is the answer.

BLOOM: Yes! Our culture worships technology.

Laurel Robinson: It’s not always the most efficient way for someone to communicate. For some kids, it’s a lot of work and effort. My role is to support communication, it isn't to give a device. It might include making a communication book, or assisting the family so they can learn more sign language. Some kids who are visual learners are like a sponge to sign language.

BLOOM: What is a typical day like?

Laurel Robinson: They’re definitely not the same. Our program goes out into the community. We consult and collaborate in the classroom with school teams, and we go into families’ homes to work with family and support staff. I’m on the road a lot. Communication happens everywhere, and our hope is to create a communication system the child can take anywhere and everywhere, to communicate with everyone.

Everyone is unique, and it’s not diagnosis-specific. We look at a child’s goals—what they need to communicate about, and participate in—and their physical abilities. The system comes second. The system needs to fit the child’s needs.

For some kids who have difficulty accessing technology, communication books and displays make sense. Sometimes we train communication partners in how to ask questions in a specific way, and to look for specific signals in a response from the child—such as a vocalization, smile or eye movement.

Some devices have face-to-face vocabulary and an integrated computer system so the child can access the Internet and social media. The iPad is an example. The iPad is great, because it’s cheap and all the kids use it, so it’s socially acceptable. But it doesn’t work for most of our complex kids. Not everyone can touch a screen with their fingertip.

BLOOM: What are the joys of your job?

Laurel Robinson: I don’t consider it a job. It’s something I’ve always wanted to do, and which I’m extremely passionate about. It’s very rewarding to see a child communicate for the first time.

I’ll never forget the first young girl I prescribed a device for. She was non-verbal. I was training her parents on how to use the device, and she was pushing buttons on it randomly, to figure things out. Then she looked at me and put her hand up. “Do you have something to say?” I asked. She nodded her head and pushed the button with the heart on it, which said ‘I love you.’ Then she gestured to her mom and her dad. Those were her first words to her parents.

I open up a world for kids to be able to participate in actively.

BLOOM: What are the challenges?

Laurel Robinson: I think the funding and resources are always a challenge.

Sometimes the challenge is someone who has very low expectations for a child. When I’m designing something, I say more is better than less. The more they have access to, the more the child can show us what they’re capable of.

I go into great classrooms all the time. But I also go into classrooms where the expectations are extremely low. That doesn’t fly with me. I can’t change that, but I can work in the home environment. I’m someone who can’t say no, because I care. Every child has the ability to communicate, and every child is communicating, and has the ability to do more. A child not learning isn’t the child’s fault. It’s our fault for not teaching them properly, and not having the right tools in place.

BLOOM: What kind of emotions come with the job?

Laurel Robinson: It can be very demanding, very stressful. We have heavy caseloads. The solutions sometimes don’t just appear. There can be a lot of trial and error, and many of the kids we work with are very complex. Every child, to a certain degree, is unique.

BLOOM: So you’re kind of starting from scratch every time?

Laurel Robinson: Yes. There isn’t a one-size-fits-all AAC system. It takes a very long time to do a complete assessment, and to find something that can work best for a child.

We work as a team here with occupational therapists, assistive technology consultants and communicative disorders assistants. It’s very interdisciplinary, and takes a full team approach to ensure a system is suitable. Our external partners include teachers, educational assistants and school board therapists. We might have 15 people around a table discussing what our goals for a child will be.

BLOOM: Is there anything you do to manage stress?

Laurel Robinson: I like to travel, and a couple of years ago I went back to skating. I had competed nationally at synchronized skating when I was younger.

BLOOM: What exactly is synchronized skating?

Laurel Robinson: It’s like synchronized swimming on ice. I love the team aspect of it, and it allows me to clear everything from my mind. I also do spin classes on Mondays and I love theatre.

BLOOM: If you could change one thing about how we approach AAC, what would it be?

Laurel Robinson: I think it’s understanding that technology is not the answer. That’s my biggest thing. Everybody feels technology is the answer, and unless technology is in place, a child can’t be a full participant. That’s a myth.

I’d also like to see mental health initiatives become a part of what we do, so we give children access to that kind of vocabulary and information.

BLOOM: If you could change one thing in children’s rehab, what would it be?

Laurel Robinson: Today, everything comes down to funding. We’re trying to change our service delivery model, to accommodate people on wait lists. But there’s a lot of behind-the-scenes work that goes on in creating communication materials. It takes a lot of time and thought and organization. It doesn’t easily fit into a numbers model.

When I started here, I felt I was able to do a better job, because I had more time to devote to each client. Now it’s ‘go, go, go,’ with an influx of referrals. It makes you have to work in a different way. As a human, and a health-care professional, it’s hard to not try to go above and beyond. That means doing things outside my 9 to 5 work. I still do those extras, because I care.

BLOOM: You and Elizabeth Baird did a No Boundaries project last year. Can you tell us about it?

Laurel Robinson: Working in Toronto, we’re in a very multicultural environment, and lots of our families have a second language in the home. But there are no multi-language communication materials. We decided to create theme displays and communication books in two languages—in English and in the language spoken by families.

We identified the five most commonly used languages by families at Holland Bloorview, and added French. So for grandparents or parents who don’t have a strong English connection, they have an opportunity to interact with the display in their own language.

Like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox, with our latest stories, mainstream news on disability, new books and shout-outs to people making the world a more inclusive place.

Read More

When a child has 24-7 needs, mothers bear the costs

An early photo of two of Sheila Jennings' children

By Louise Kinross

As the mom of a son who had severe asthma and a life-threatening immune condition, Sheila Jennings learned firsthand that it was impossible to work outside the home and tend to her child with complex health needs.

“My interest in the support rights of mothers of severely disabled children began after I got divorced and set up my law practice while caring for three children,” she says. “My son missed about 40 days of school in Grade 7, and a similar amount in Grade 8. He had severe infections, was followed by four clinics, and was frequently in the Emergency Room. One time I was just about to go into the courtroom, and I had a call that something was wrong at school. I called my son’s father, who is an emergency room physician, to ask if he could find out what was going on, and he said: ‘I have someone here with a screwdriver in their head.’ Even when I had a spouse, he didn’t necessarily have the ability to drop everything. I started to get sick myself in 2005, and when I became very ill, I had no choice but to close my practice.’”

Sheila recently defended her PhD thesis called The Right To Support: Severely Disabled Children And Their Mothers at Osgoode Hall Law School. “Within complex care, visible and hidden costs have been offloaded onto caregiving mothers by governments,” she writes in the study's abstract. We spoke about her research, and why she believes that the extraordinary demands currently placed on Canadian mothers of children with complex needs might constitute ‘cruel and unusual treatment or punishment’ under section 12 of the Canadian Charter of Rights and Freedoms.

BLOOM: What was the purpose of your research?

Sheila Jennings: I wanted an answer to the question: ‘What are the legal rights to support for mothers who have severely disabled children, and what should they be?’ I thought it would be a very simple question. But it was anything but.

My project looked at literature, as well as 184 cases, which were mostly Canadian. These were cases where caregiving mothers brought law suits or defended against the actions of others. They took on the Canada Revenue Agency or social benefits, or said they needed more spousal support due to their child’s complex needs. I used cases from every jurisdiction and from an online database, so mothers can easily access them in support of their own complaints.

BLOOM: What did you find?

Sheila Jennings: It was fairly uniform that if the moms were single and unable to work, they were falling into poverty and struggling, and they were often opposed in cases they brought. There were sympathetic judges, but caregiving mothers’ support needs slid between categories in law, and often couldn’t be helped in court. There was the occasional win, which might take months or years. Litigating mothers became embattled while also providing care. Lawsuits are exhausting and stressful. And each case was usually just one win—there were hardly any systemic wins, where the court said from now on every mother who needs this support will get this amount.

One of the problems is that child support is considered for the average child. You can ask for add-ons, but the cost of respite care and basic nursing care must typically be fought for.

BLOOM: Can you describe one of the cases?

Sheila Jennings: One public law case was brought by a woman who was divorced and had a six-figure income. She had three children. She came to the Social Benefits Tribunal in Ontario to ask for funding through Assistance for Children with Severe Disabilities (ACSD). ACSD had said no, your income is over the funding cap of $60,000, so you can’t have the amount you say you need. Yet 50 per cent of her income was going to disability-related supports. 

She’s a good example of someone who had a full-time job and a big income, but it still wasn’t enough to make it manageable. The tribunal agreed that she'd made the case for the additional money, but it was on a one-off basis. Three years later, she was back in front of the tribunal when her funding application, over what was, in fact, a discretionary cap, was again refused.

I have so much admiration for these women. They’re living extraordinarily difficult situations with their children, and they’re rolling up their sleeves and taking on the government, or the other parent who doesn’t want to pay. The other parent says it’s the government’s job to pay, and the government says it’s the other parent’s job.

The system for disability supports across Canada is very fractured. It’s not a uniform system, nor can it be easily accessed. The ministries frequently shift people around and change programming. There's rarely an expert in charge with a great deal of knowledge on the file. It’s very hard to get systemic change or sustained change. Much of the work caregiving mothers do is invisible. People can be sympathetic, but they don’t realize how much work is involved and what the implications are. This is a different form of motherhood, and it needs to be supported as such.

BLOOM: I remember when my second child was born without disabilities, being absolutely shocked at how easy her care was.

Sheila Jennings: Yes. Reflecting back on when my third child, who is athletic and healthy, was born, it highlighted for me that the mothers I was studying were different. The support needed for a child who is playing soccer, has tons of friends, doesn’t get sick often and has no physical issues that land them in hospital, is not comparable.

I think professionals who are going to be working with caregiving mothers should be going into the home for two to three days, to see what’s involved. In my project I decided not to call the mothers 'complex-care moms.' I decided to use a feminist lens and use the term 'maternally complex care.' It’s a different form of motherhood.

Too often, people see a regular mom, and they see the complexity as medical- and hospital- and doctor-centred. That is treatment.

It's the mother who is providing the complex care. 

Maternal complexity, rather than medical complexity, gives status recognition to the woman who's doing the care, and Canadian research shows it’s 97 per cent women. Many have given up jobs to care for a child with additional needs. It's an important role in society that carries a price, and it doesn't come with workers' compensation, pay or a pension.

I'm interested in how these women are seen and treated in our culture. They get sympathy and sometimes pity. Or even admiration. But care of this kind is not recognized as the work it is. I’ve said before, going to court as a lawyer on a difficult file was easier, any day, than dealing with the objective and subjective maternal complex-care issues that would arise with my son. 

Caregiving mothers may be traumatized while providing care, and at the same time you’re also running the house and doing everything else women are socially assigned to do.

My research also showed that it's hard for children with complex-care needs to see their mother's exhaustion from the heavy lifting, so to speak. It's an issue for children too.

BLOOM: Did you come up with any recommendations for change?

Sheila Jennings: One recommendation I considered is the treatment of caregiving mothers in light of section 12 of the Charter, which provides that ‘Everyone has the right not to be subjected to cruel and unusual treatment or punishment.’ 

I made preliminary arguments that to have mothers alone held responsible for this care, in the manner it’s currently provided, meets a legal test to show section 12 is violated. 

Mothers’ health is being negatively affected, and not just a little bit. There’s even a study out of Australia about how mothers of complex children have much higher levels of mortality.

BLOOM: There was also a population-based study done by Dr. Eyal Cohen at SickKids that showed an increased risk of early death in mothers of children born with anomalies like heart disease or Down syndrome.

Sheila Jennings: Right. So we know this correlation is an issue. 

BLOOM: What was the typical outcome of the legal cases you analyzed?

Sheila Jennings: Overall, you can see that the mothers are embattled. For example, there was a 2004 mother with a child with progeria, which causes early and rapid onset of aging. She wanted an increase in night nursing hours, and she wanted the government to subsidize, or pay for, private nurses she had to hire when the CCAC nurses didn’t show up. She also didn’t want CCAC to send her personal support workers who didn’t understand her child’s condition.

BLOOM: I looked at the case you sent, and she also wanted registered practical nurses who did overnight shifts to be paid at the registered nurse rate to better retain them. And she wanted a back-up plan with the hospital, so that CCAC-booked shifts wouldn’t be cancelled.

Sheila Jennings: Yes. Unfortunately, she had no legal leg to stand on. The CCAC client was her child, not her. I address this issue as one of relational rights in my project. She lost her claim. It’s 15 years later, and these home-care failures haven’t gone away. We read about the same problems from parents like Marcy White and Samadhi Mora-Severino. We have another generation dealing with the exact same thing.

BLOOM: How could section 12 be used to create change?

Sheila Jennings: Lawyers and mothers doing this kind of care need to get together to list the harms they’ve experienced, and to consider what kind of legal action is possible.

For example, it’s not okay to be on call 24 hours a day, nor to have consistently interrupted sleep for years. This is way outside the gamut of modern day labour standards. A mother interviewed recently by a Montreal newspaper said ‘What kind of world do we live in, where I’m supposed to be up, day and night, providing heavy physical care?’ There isn't a union or workers' compensation to protect these women when they're injured or become ill. Caregiving mothers bear the risks. That's monstrous, and as a society we can do better.

BLOOM: You mentioned that you looked at how our culture views mothers of children with disabilities.

Sheila Jennings: Yes, I did, and it's very interesting. The special-needs mother is romanticized, and put on a pedestal, and is portrayed as having a high cultural value. You think of Princess Diana in Pakistan holding a dying child, or Princess Kate landing on the runway in Alberta, and hugging a child who had obviously been in cancer treatment.

But that runs contrary to the way that caregiving mothers, particularly those who provide maternally complex care, are treated at a provincial level. The reality is that they’re often isolated and alone. Donna Thomson’s book The Four Walls of My Freedom alluded to that. There is exclusion, not only of severely disabled children, but of their mothers too.

BLOOM: What are your next steps?

Sheila Jennings: I hope to teach again this year. I taught last year at the Ontario Tech University, and I was able to bring these issues up in my family law course and also, to a degree, in my human rights course. Students were very interested. I'm also in the midst of writing two papers and preparing a proposal for a book with an academic press.

In addition to her years practising family and child welfare law, and doing her PhD, Sheila Jennings did an MA in critical disability studies. You can follow her on Twitter @SheilaKJennings.

Read More