Tuesday, June 18, 2019

'Our nursery programs are a model for social change'

By Louise Kinross

It’s a simple ritual, but one of Silvia Souto’s greatest joys. “Opening the door of the classroom at Play and Learn, and seeing the faces of the children—so happy and eager to come and play in our program—that is pure joy,” she says.

Silvia is an early childhood educator in one of Holland Bloorview's two nursery schools, which are located in the community. Play and Learn includes children with and without disabilities. Silvia first worked as a volunteer at our old hospital site in 1999, after moving to Canada from Argentina, where she was born.

In April, Silvia and Play and Learn co-worker Isabel Zatti made a trip to Macao, China, where they shared Holland Bloorview’s vision of inclusion with early learning educators from 80 countries. 
Isabel and I felt the voice of inclusive programming was not heard at other conferences we'd attended. We wanted to do something about it,” Silvia says.

BLOOM: How did you get into this field?

Silvia Souto:
After studying psychology and education at university, I worked in special education services in Argentina with children from infants to age five. When my husband and I came to Canada, and were trying to improve our English, my ESL teacher encouraged me to look into Bloorview. You will talk to people who have similar interests, she said, and it will help your vocabulary. I came for a visit and was accepted as a volunteer in the child life program doing bedside play.

I vividly remember the nursing station. Cara Sudoma was one of the nurses there, and she would come in and out, full of energy. Later I did an internship in the child life department, was hired at Play and Learn’s summer camp, and accepted a part-time and then full-time job. I did my equivalency and got my credentials as an early childhood educator.

BLOOM: What is a typical day like now at Play and Learn?

Silvia Souto:
The day is 'go, go, go,' with no pause button. The program starts at 9, so we're there at 8:30. It’s a high-quality program, which means we need to carefully plan and prepare. We do a lot of hands-on, sensory activities and art. We want the children to express themselves and explore freely. If we see something they’re interested in, we’ll include that into the preparation for the following day. We follow the children's lead.

We take early literacy and play very seriously, so we do a guided learning circle every morning and use stories to reflect on what the children are doing in their play, and their interests. When we tell the stories, we use props to catch the children's attention. Our guided learning circle is an opportunity to learn new words, make connections between stories and play. It's an invitation to join in with peers and share the joy that comes with listening to a story. 

A typical day happens inside and outside the classroom. In addition to providing children with a rich and meaningful learning environment, we discuss and document their progress, brainstorm strategies to support their participation and learning, talk to their families, and meet with our team of therapists.

BLOOM: How many children are in a group?

Silvia Souto:
I work with 10 toddlers and one other teacher. We have one group in the morning and one in the afternoon. We also have volunteers and sometimes co-op students in the classroom. We have a team of therapists who support us in the classroom. They develop a plan of intervention and we find ways we can include it within the child’s play, so it doesn’t look like therapy.

BLOOM: What’s the greatest challenge?

Silvia Souto:
Compared with the challenges our families are facing, I don’t feel I have a right to say it’s challenging. I enjoy it very much. In order to support children and families I do have to take care of myself, because I need to be present constantly in my interactions. It’s a demanding job physically, and you have to be emotionally fit. Sometimes I have to remind myself about what you're told on the plane—to put the oxygen mask on yourself first.

BLOOM: Is there anything specific you do to manage stress?

Silvia Souto:
We have a very tight and absolutely supportive team that I can always go to, if I need to. I know I can always count on them for guidance, or support, or for taking a break. When you trust your team in that environment, it’s easier to manage stress.

Personally, I like skating in the winter. I keep my skates in the car and sometimes I’ll stop at the local rink and do a couple of laps. The other thing I do to take myself completely out of my worries is jigsaw puzzles. If I need to concentrate on something, I’m going to open a puzzle box. There’s something I love about going from complete chaos to finding the perfect fit.

BLOOM: What’s the greatest joy of your work at Play and Learn?

Silvia Souto:
The trust the parents put in us gives me an immense amount of happiness. For some of the families, our nursery school is where they leave their child for the first time. The other element is witnessing how inclusion works—seeing the interactions of the children, and thinking we are planting the seed for a more just society.

BLOOM: What qualities do you need to be successful in your role?

Silvia Souto:
Energy, definitely. It’s a physical kind of job. You need to be someone who can connect, who can be trusted to develop meaningful relationships with the children and their families. You need to have a solid knowledge of child development. You have to understand children in the context of their families. You need to have a playful soul, to think as a child, and to be creative.

BLOOM: How do you get your energy?

Silvia Souto:
At the end of the day, I like to say I’m enthusiastically exhausted.

BLOOM: Recently you and Isabel Zatti, Play and Learn’s site facilitator, went to speak at a conference in Macao, China. Can you explain?

Silvia Souto:
Isabel and I went to the World Forum on Early Care and Education, which is a global exchange of ideas on how to develop high quality programs in early childhood. This year there were almost 800 people from 80 countries.

Isabel and I felt the voice of inclusive programming was not heard at other conferences we’d attended. We wanted to do something about it. This was the perfect venue, because with so many people, our voices could be amplified.

BLOOM: What was your workshop about?

Silvia Souto:
We presented on a panel on inclusion, from infancy to adulthood. We presented with educators from South Africa and India and Hong Kong. We talked about how Holland Bloorview is a hospital, and within the hospital we have early learning programs like the nursery schools. We took some of the messages from our Dear Everybody campaign, and showed how we embed these messages into the work we do. For example, ‘If we can’t include everyone in a game, we’re not playing it right.’ We gave examples of how we adapt activities and toys to make sure all children can participate.

BLOOM: How did people respond?

Silvia Souto:
They were fascinated that a hospital had a community nursery program within it, and that early childhood educators could work in a hospital. They hadn’t seen that before.

We made connections with a lot of people. We feel our nursery programs are a model for social change, and we have to invest in those formative years to build a more inclusive society. We wanted to spread the idea that if we support children in developing an acceptance that we’re all diverse, and do it at an early age, it’s much easier than trying to change behaviour later on. The interactions that happen in our programs are so natural.

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

Silvia Souto:
I think inclusive community programs like the ones we have are key. Play and Learn is unique in that we have a lot of support. We have access to training, to other professionals, and we work as a team. But that doesn’t happen in schools, or even in other childcare centres that are working towards inclusion. They may have resource consultants, but I'd like to see a much higher level of support in daycares and schools.

Monday, June 17, 2019

Off-duty officer kills non-verbal man, injures parents in Costco

By Louise Kinross

This is a horrifying story for all of us in the disability community who love someone who doesn't speak, and may not be able to comply with police orders in conventional ways.

On Friday night, Kenneth French, 32 (in photo above right, with his parents), was shot and killed by an off-duty police officer in a California Costco store. The officer also shot and critically injured French's parents, who were grocery shopping with him.

Police, speaking to reporters just after the incident, said it happened after an argument between two men. According to this news release from the Corona Police Department, "Without provocation, a male unknown to the officer's family assaulted the officer while the officer was holding his young child. This attack resulted in the officer firing his weapon, striking the male and two of the male's family members." The child was not injured.

However, French's cousin, Rick Shureih, told the Los Angeles Times that French was nonverbal and had an intellectual disability, so a verbal argument wasn't a possibility. 

"Speaking about his cousin, Shureih told the paper, 'He was a gentle giant...He's never been violent in the past. He's always been very cooperative and kept to himself.' Shureih said it's possible his cousin may have bumped into someone but he wouldn't have been able to communicate that he was sorry."

Police have not named the officer involved, who was released from hospital with minor injuries. 

This BBC piece 'Don't shoot, I'm disabled,' looks at the hundreds of people with disabilities who are killed by police in the United States each year, because they don't respond in conventional ways to police commands. It could be a person who is deaf, or mentally ill, or who, like French, has an intellectual disability.

In a more recent Los Angeles Times piece, we learned that the French family was from Toronto. "Sandra Serrao, who lives in the Toronto area and has been friends with the French family for more than a decade, said the couple and Kenneth moved to California from Mississauga a few years ago to help care for [their] elderly parents...She said Kenneth French was not the type of person to provoke anyone..."

Thursday, June 13, 2019

In 2019, physical restraint of disabled people is still a thing

Illustration from Captive and invisible

By Louise Kinross

A couple of months ago I wrote down 'physical restraint and seclusion' as a story idea. But when I looked at it on the list, I kept hoping there would be a reprieve. 

Instead, every time I went on social media there was a new horror story about disabled children and adults who were restrained, physically or verbally abused, or locked in a school isolation room, hospital, assessment unit or 'care home' for adults. 

Yesterday, I read Captive and invisible. It's a series of stories about disabled people who are locked away in hospitals, institutions and private homes. It was produced by the UN Special Rapporteur on the rights of persons with disabilities. One of the stories is about people in Ghana, for example, who are sent to prayer camps, to be healed, where they are shackled and live in horrendous conditions. Catalina Devandas Aguilar, the UN expert, discusses the series here.

The selection of stories, such as the one in the image above, suggests that the problem is in developing countries. "Amil is autistic, and he lives in a rural village with his family," is the text that accompanies it. "They have no help, and there are no services in the community, so he spends all his days and nights locked up in a room."

But this isn't just happening in low-income countries. It is happening in Europe and the United States and right here at home in Canada.

Last month, the BBC aired a shocking investigation into a British home for adults with autism and intellectual disabilities. The home, funded by the National Health Service, is referred to in the British press as a 'specialist hospital for people with learning disabilities,' which is the term used there for intellectual or developmental disability.

A reporter went undercover as a worker and filmed her colleagues taunting, intimidating, degrading, provoking and repeatedly restraining patients. They bragged about times they'd assaulted patients, like banging a person's head against the floor. Then it was revealed that patients had reported bullying by staff in an inspection report in 2015 that was never published. Last year, the home was bought by an American multinational company. What interest, other than monetary, could a U.S. multinational have in a British hospital for people with intellectual disabilities? Ten staff members were recently arrested.

A similar case in New York City came to light five years ago in a home for adults with developmental disabilities dubbed the "Bronx Zoo" by staff. But despite an investigation that found staff at the state-run home smacked, pushed and punched residents, New York State officials who tried to fire 13 employees for abuse or neglect were unsuccessful.

According to an article earlier this week in The New York Times, the workers were shielded by the state arbitration process. In addition, The Times found that over one-third of employees statewide found to have committed abuse offences at group homes and other facilities between 2015 and 2017 were put back on the job.

Which reminded me of my own son's experience back in 2009, when a school staff member, angry because he picked a butt up off the ground in a park, and pretended to smoke it, dragged him across the playground and pushed him into his wheelchair. He had a dislocated hip at the time. Other staff reported this person, but the principal didn't deem it necessary to call me until 24 hours later, when she asked if my son had told me about an 'incident.' No, he doesn't speak, he hadn't, I said. It wasn't until that night, when I asked him about it, that he signed the story to me. He never would have told me otherwise.

The staff member was sent home, the police were called, and I was asked to check for bruises. I was told that the staff member would never be in a class with my son again. Imagine my surprise, then, when the following year, this same staff person turned up working at the mainstream school my son had transferred to. And had the nerve to approach, and talk, to my son. So I had to call the principal and read him the riot act that this person was to have no contact with my son.

Only two days ago, this piece in The Globe and Mail summarized the Canadian practise of physically restraining or isolating, in locked rooms, children with autism or other disabilities who "act out." Sheila Bennett, a professor at Brock University in St. Catharines, Ont. was quoted as saying she was horrified to hear about a plan to build more seclusion rooms in Ontario school districts. "When an isolation room exists, it becomes a viable alternative for behaviour and inhibits our ability as experts and educators and compassionate people to find solutions that work better," she said.

In April, a British teenager with autism and mental health problems who had spent two-and-a-half months in an isolation booth at school, a variation on the isolation room, where students sit in cubicles in silence and have no direct teaching, tried to kill herself. Her mother said she was unaware, for months, of what was happening.

I'm not an expert, but how could any educator possibly imagine that a child with autism and anxiety would blossom sitting alone in silence?

Just yesterday, I read a post in a closed Facebook group for parents of children with disabilities where a local parent asked if a school has to document every time a staff member physically restrains her child. She'd been asked to pick up her young child in the morning, and it was only after he was in the car that she learned that a teacher had put him in a hold. 

A teacher can restrain a child in a physical hold, and not tell a parent about it?

In 2019?

In another Ontario online group a parent spoke about how her adult son with autism has spent months in a locked psychiatric hospital because there are no options for him to live in the community. And she knows of a handful of families in similar situations.

Last week the photo below was tweeted by many British parents to show what it's like for a parent in the U.K. to visit their autistic teen who is locked in an inpatient mental health facility. 

How did being held like a criminal become an accepted practice for disabled children and adults in our schools and hospitals and group homes?

Tuesday, June 11, 2019

Why do so many parents feel inadequate?

By Louise Kinross

When I first saw the title of Ann Douglas's new book, Happy Parents, Happy Kids, I was a bit skeptical. I wasn't sure if it was too simple a premise to apply to the unique challenges of parenting kids with disabilities or chronic health problems.

But in Happy Parents, Happy Kids, Ann argues that many of the pressures facing parents today can't be relieved one family at a time. That's why broad changes are needed at a cultural and policy level to create the kind of wrap-around supports that enable all parents and children to thrive. We talked about why so many parents today feel so inadequate, no matter what they do.

BLOOM: In 2015 we spoke about your book Parenting Through The Storm—which focused on parents raising children with neurodevelopmental disabilities and mental health issues. What inspired you to write another book?

Ann Douglas:
I thought a lot of the messages conveyed in Parenting Through The Storm needed to land with a broader audience of every parent. It’s not just parents of kids who are struggling who need to think about self-compassion, self-care and community. Every parent is at risk of feeling isolated and burnt out and self-critical. 

BLOOM: What kind of parents did you interview in your new book?

Ann Douglas:
I tried to go for a diverse group of parents. I have people from every kind of income level, and different situations, family structures and challenges. The book includes insights from the parents of a child who is living with a rare disorder that makes the future a wildcard. It includes the story of a mom who is living with stage four cancer. And it features comments from a mom who is juggling five part-time jobs, and who is completely fed up with pat answers and simple solutions.

I deliberately asked the technical reviewers of the book to look at inclusiveness and equity. For example, at one point in the book I’d written about doing batch cooking on the weekend, and one of the tech reviewers pointed out “If you can barely afford the groceries for one meal, you can’t afford to do batch cooking.’ I wanted to make sure we weren’t just talking about people in traditional, predictable 9 to 5 jobs, when the new normal for many families is contract and more precarious work. 

BLOOM: I heard you speak recently, and you said many parents who were really interested in the idea for your new book then declined to be interviewed for it. Did that surprise you?

Ann Douglas:
It did, because I’ve been writing about parenting for a long time, and I’d never felt that level of fear, particularly here in Canada. It seemed that all parents had a sense that they were parenting wrong. There was a lot of worry about judgment from others. They felt they might not be the best parent to be interviewed about this stuff. There’s been a lot of anxiety happening in the broader parenting culture. Parents are anxious about the world they’re raising kids in today, and what it’s going to be like when their kids are old enough to establish their own lives. They’re anxious about so many things.

Locally, in Ontario, we’ve seen parents speaking out about the changes to autism services, and the cuts to education funding. And it's not just parents of children who are directly affected who are feeling this anxiety. Parents worry that the same thing could happen to a program that affects their child, or perhaps to a more universal program that’s available to all families.

Parents feel like they’re being asked to shoulder so much responsibility, and they’re worried that the rules of the game have changed. Maybe you can’t get the job that allows you to pay the bills. Maybe you’re piecing together a whole bunch of precarious and unpredictable jobs and wages.

Parents are thinking ‘I can hardly do this now, what happens if things get worse?’ Anxiety is a perfectly logical reaction to the state of the world today, and we need to stop blaming parents for being so anxious, and give them less to be anxious about. We all need to link arms and say ‘It’s not right that anyone is losing out on what their child needs to thrive.’ 

BLOOM: What other factors make parenting feel particularly hard these days?

Ann Douglas:
In order to pay the bills, in most families you need to have both parents working full-time, and a lack of work-life balance is a huge issue.

A lot of research shows it’s at the heart of what makes parents feel guilty and inadequate on a personal level. Parents think if they just try harder, they could figure out a way to have the energy to be working full time, and at the same time to be parenting to an increasingly high standard. People feel massively overloaded and guilty. A parent named Elaine in my book said it doesn’t matter where she is, or who she’s with, she feels she’s letting someone down at work or home. 

BLOOM: What in your new book will resonate with parents of children with disabilities?

Ann Douglas:
I think what’s different about this book is that it’s a much more political book. Parenting Through The Storm was rooted in personal stories and what you can do at an individual family level, and the need to have peer support and community. The new book is about grabbing your community and your picket signs and demanding a better world for kids and parents. 

BLOOM: So the problems we’re facing aren’t ones we can necessarily solve alone?

Ann Douglas:
No. One of the parents I interview in the new book said systemic problems require systemic solutions. Otherwise, we feel it’s an individual failing when we can’t make it all work. But how can we make it all work?

How can we solve problems like climate change or create universal child care in our spare time? Then, when a parent is dealing with something extra, like a child’s disability, you can turn up the dial by 10,000 per cent. 

BLOOM: You talk about the importance of parents remaining calm.

Ann Douglas:
First, it’s important for our own parenting. Unless you can hit the pause button and consider what’s working, or not working, with your child, you can’t pivot and figure out the best way to move forward. It’s also important to provide an atmosphere where kids feel reassured that as parents we’ve got it—we’re going to take care of them, and they don’t have to worry about parenting us.

I’m someone who has to work really hard at staying calm. It’s not my natural state, and I recognize that a lot of people are wired this way. We should probably say it’s important to stay 'calmer,' not calm, even if it’s just at the start or the end of the day. We don’t need to be intensively doing meditation for hours on end! That’s never been the reality of my life, and it won’t be for most people. 

BLOOM: How can we be calm when we’re dealing with the uncertainty of a child with chronic illness or complex problems?

Ann Douglas:
One thing you can do is find a safe person who can help you to carry the emotional load. There’s an awful lot of administrative work and letter writing when your child is struggling. The next time your child is suspended, maybe you can get a friend to write that letter to the school. Every letter doesn’t have to be written by the parent. Maybe another caring family member or a friend could write it. Maybe instead of feeling that you have to read all of these websites to find out what your child qualifies for, you can tap into a pool of people who’ve already done that reading, so you don’t have to start from scratch. 

BLOOM: So a group online for parents of kids with disabilities?

Ann Douglas:
Yes. We’re also talking more in society now about the idea of being an ally to somebody. So who do I know in my circle who might be good at writing letters? Who is a chatterbox and would love to make a bunch of phone calls to ask questions of service providers? 

Over the weekend I received a message from a friend asking me to write a letter to encourage politicians in a nearby small town to reconsider their longstanding policy of never flying the pride flag. I was so happy he made that ask. I spent half an hour writing a letter I was proud of
—a letter that talked about how important it is for every citizen of, and visitor to, that small town to feel welcome and included. Too often, we have a misguided notion that it’s wrong to ask other people for a favour, and we forget the times we’ve been able to do someone a favour, and how great it feels. 

BLOOM: One of your chapters is about guilt. I know parents of kids who are born with disabilities may feel guilty because we couldn’t prevent our child from having extra challenges.

Ann Douglas:
We need to look at the difference between situations that are, or aren’t, within our control, and be clear where these things fall. In most cases, none of us would consciously choose to make life harder for our kids. With genetics and the environment it’s a bit of the spin of the roulette wheel for all of us.

We also need to think about guilt in terms of the expectations we place on ourselves. I often hear from parents of kids with special needs who feel they’re doing it wrong, because they’re exhausted, or not joyous or endlessly positive. When you’re burning out, how can you feel joyful and energized? We have to be realistic, and not add an additional layer of ‘I have to be endlessly positive’ on top of what is already a massive and unsustainable load. 

BLOOM: I’ve found the messages from Kristin Neff’s books on self-compassion helpful.

Ann Douglas:
The biggest thing I’ve taken from her work is to reframe what we tell ourselves by asking ‘Would I say this to a friend?' If a friend told me ‘I’m the worst parent in the world,’ what would I say? Then try to say those kind things you would tell a friend to yourself. 

BLOOM: You argue that parents and kids need a village of support around them. Sometimes it's hard for parents of kids with disabilities to find that support, or build it.

Ann Douglas:
At a lot of my presentations, parents are telling me that they feel isolated and cut off. Given that so many of us are massively overloaded with work and other commitments, it’s not surprising. But sometimes people get this idea that to have a village you have to have 40 people around you. The village could be two to three people. It doesn’t have to be huge to be strong.

Saturday, June 8, 2019

Busy engineer finds happiness in children's hospital

By Louise Kinross

Emile Benyamin is an engineer who spends his days taking care of robots. His robots extract DNA from human blood and saliva, so it can be studied in research and clinical labs in hospitals. Emile travels across Canada to train scientists on the robots, and troubleshoot when there are problems.

But when BLOOM interviewed Emile, he had come in to Holland Bloorview on a Thursday night to volunteer with young children in our Ronald McDonald Playroom. “Emile is always down at the level of the kids, right in the thick of it all,” says Daniel Scott, who coordinates the playroom. “He’s very eager and hands-on with building or imaginative play.”

Emile's presence meant that the children’s parents could attend a talk about getting their kids, who have disabilities, involved in sports.

On Saturday mornings, Emile, whose three children are grown, drives in to the hospital from Richmond Hill to volunteer with inpatients with the most complex medical problems. Many, like Krystal above, use ventilators to breathe. Last Christmas Emile dressed up as Santa Claus on the unit. We spoke about why he’s so committed.

BLOOM: How did you hear about Holland Bloorview?

Emile Benyamin:
I work in hospitals—even Sunnybrook is one of our customers. I love kids in general and I always wanted to come here to volunteer. I do a lot of work for SickKids hospital. When I applied to volunteer here, I had to get two references, and one was from a PhD I work with at SickKids. I’ve been working at SickKids for more than 10 years, and they know me well. When I joined here, I was so impressed with the hospital and the services for the children. That’s why I love it so much, and I wanted to give more.

BLOOM: What is a typical shift here like for you?

Emile Benyamin:
 My main shift is Saturday morning from 9:25 to 11:45 on the complex continuing care unit. We have a supervisor who runs a program—like art or cooking—and we usually work one on one with the children. Some are able to participate and others aren’t. But we still work with them, and hold their hands. Some of them we don’t know if they feel or hear us, while others hear and understand. If there isn’t a program, we may sit with a child at the bedside and read.

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

Emile Benyamin:
My focus is on how to make the children happy, how to comfort them, and most importantly, making sure they are safe.

Even though they are not speaking they are communicating a lot. They may smile. When one child is not comfortable, she will shake her head. We know something is bothering her—maybe she needs [her airway] suctioned, or she wants us to change the song we’re playing.

BLOOM: So you learn how to read their communication. You’re a very busy person. How do you make time to volunteer here?

Emile Benyamin:
I don’t go to movies. This work is fun for me. 
Put me somewhere where I can play with kids. It’s my relief. It takes away all of the stress and hassle of thinking about work and problems.

BLOOM: What’s the greatest joy?

Emile Benyamin:
I love the kids so much that I find myself very happy being with them. Because the children are weak or sick, I feel good about doing something good for them. I'm always excited to work with them.

BLOOM: I know this place can be like a ghost town on the weekend. How do the children on the unit benefit from people like you coming in?

Emile Benyamin:
In my opinion, we do a very good program, and the program drives us. I’m just a part of it.

BLOOM: How did you get so committed to volunteering in the first place?

Emile Benyamin:
I volunteer with a seniors’ home close to my house in Richmond Hill. I’ve been doing that for 10 years. I have so many friends there. I had one client who was a very good friend of mine who passed away last year. She was 96 and she had a very sharp memory. She would ask me to sit, so she could tell me stories from when she was four years old. It’s heartbreaking sometimes when I go and I don’t find someone I’ve been seeing for years.

BLOOM: Has anything surprised you about your work at Holland Bloorview?

Emile Benyamin
: Yes. The staff are very well trained and they respect the kids so much. They really care about them.

For example, sometimes we do reading, and one boy’s eyes are usually closed. I was taught to put the book mark exactly where I stop, so that when the next person goes to read, they know where to start. I see a lot of respect in this. I’m trying to learn from the staff.

BLOOM: You mentioned that most of the volunteers are students.

Emile Benyamin:
Yes. I’m the only old guy there. I love to see people of a young age volunteering. The community needs it and the children need it. When we have a new, young volunteer, I keep an eye on them, too.

Emile and Emma at work making chocolate chip cookies that fill the room with fragrance.

Friday, June 7, 2019

'Kindness matters...that is what good care is'

By Louise Kinross

Karen Ward has worked with children with disabilities for over 30 years. I met her 22 years ago, when my son attended a Scarborough nursery school run by Easter Seals (the program is now run by Holland Bloorview). Karen explained how the integrated, play-based program worked. She was so warm and kind and upbeat. Karen hasn’t changed a bit, but she now manages many clinical programs at Holland Bloorview, with a focus on work in the community. We talked about the joys and challenges.

BLOOM: How did you get into this field?

Karen Ward:
I took a bachelor of applied science in child psychology at Guelph University. Do you remember Robert Munsch?

BLOOM: The children’s book author/illustrator?

Karen Ward:
Yes. He was one of my professors. He was fabulous in how he engaged students to engage young children. He was someone who made me understand the importance of early learning and that I wanted to be a part of it. My first role after school was running a daycare program for children with special needs at Variety Village. It was run by Easter Seals, but located at Variety Village.

BLOOM: And later the nursery schools in the community that were run by Easter Seals became Holland Bloorview programs.

Karen Ward:
Yes, in 2003 Joan Ferguson and Sheila Jarvis could see that the children we served in the Easter Seals programs were followed here, and there would be better alignment to have the programs run by Holland Bloorview.

The nursery schools were aligned with participation and inclusion, because they were community programs. I’ve always been interested in community-based education. Whether we have early childhood educators doing play-based intervention with families in their homes, or specialized teams who go into Toronto day cares to provide therapy or help adapt a program, or therapists who support clients who use communication and writing aids at home and in schools.

BLOOM: Why were you interested in children?

Karen Ward:
I came from a really large family where there was a lot of family involvement. I think I saw the amazing potential in young kids. I saw they were this wonderful canvas for what could be, and I wanted to be a part of that.

I remember going for my first job interviews and they were to work with typically developing kids. I thought that might be interesting. But then this opportunity at Variety Village came up and I thought it would mean a huge amount of learning for me. I was fascinated by it.

BLOOM: Was that your first exposure to disability?

Karen Ward
: No. When I was in my teen years I was a swimming instructor and a lifeguard and I had taught children with disabilities before.

BLOOM: What is a typical day like here?

Karen Ward:
You’ve got to be kidding! I’m constantly changing hats. I may get calls from any one of the programs to help them troubleshoot, when we need to make adaptations.

I have amazing teams that run exceptional programs, and I’m honoured to work with them. A typical day is always trying to improve the quality of what we’re doing. One of the big things we’re doing right now is building community capacity.

A lot of my role is making sure I understand politically where we’re going, and who are the internal and external partners we need to be constantly dealing with to push that forward. Now we’ve become part of ambulatory services, we’ve really broadened our scope.

I think early learning, especially, is being recognized as an important enhancement to a lot of programs. For example, when a child under age five comes into our spina bifida clinic, they will see an infant development worker who will help link the parents to supports in the community.

Or if we have a young inpatient here about to be discharged, we will give them information about local services, whether that’s in Toronto or Thunder Bay. People are asking our staff to share their expertise, whether it’s in creating play-based therapies for kids with autism, or making sure literacy and communication are embedded in school curriculums for our clients.

BLOOM: What is the greatest challenge of your job?

Karen Ward:
Making sure that we clearly hear what our clients and families need. They drive our programs of excellence. They make us think differently. They’re at the core of everything we do.

BLOOM: What’s an example?

Karen Ward:
Well, we’ve looked at revisions to the referral criteria for communication and writing aids. Based on the organization's No Boundaries strategic plan and client and community feedback, we worked diligently to streamline the process. We made it more user-friendly, understandable and easier to access. We talked to families, reflected on best practices and what other agencies are doing, and adapted the criteria.

BLOOM: What's the greatest joy?

Karen Ward:
Talking to the parents. No question. Staying connected with the parents over time. I’m known so many clients since they were two or three years old. They’re the ones who have made me change. I’m fascinated by clients and families, and I listen to them.

Then there are the frontline clinicians. I’m in awe of what they do and so respectful of it. I don’t want to be their leader, I want to be their partner. I’m so pleased when we, as a team, make a quality improvement and everybody sees the benefit of it. I’m a real hands-on leader.

BLOOM: What other qualities do you need to be good in your job?

Karen Ward:
You need a tremendous level of awareness and of kindness. You need to figure out how to manage people. You may need to make decisions that don’t always have the full support of everyone. However, you acknowledge that concern, and ask that we all just give it a try. We need to keep trying, and to have a vision of what can be better, even though we might stumble along the way. I’m always telling staff that if something doesn’t work, we will work to make it right.

BLOOM: What emotions come with the job?

Karen Ward:
Tremendous joy, because I absolutely want to be working here. I do have concern about the future of some of our services for our families, based on municipal and provincial politics. I do worry about how some of our families will access some programs. I do get frustrated that we can’t do more, or there isn’t enough time in the day. I’m often concerned about the wellbeing of the staff. They give 150 per cent, and I’m always trying to keep their health and wellbeing in check. I care very much for them.

I love the busyness of my work. I love that it’s never the same day.

BLOOM: Is there anything you do to manage stress?

Karen Ward:
I really love walking. I walk on the boardwalk at the beach. And I have a couple of really good friends, and sisters, that I make sure that I see and spend time with.

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

Karen Ward:
I think we need to broaden what we do. We’re trying really hard to expand our hours and the diversity of groups that we offer. Our families have such a hard time when our hours are rigid. 

The other thing I think is key to success, and which we haven’t done as well as we could, is to infiltrate the community. We need so much more of our rehab services in core community groups—in camps, sports programs, library programs. We need so much more of us 'out there,' instead of 'in here.' We need to broaden our arms. If we keep rehab within four walls, it will never be as inclusive as we need it to be.

BLOOM: If you could give yourself advice on your first day, from where you sit now, what would it be?

Karen Ward:
Kindness matters so much. I think we need to remember to be kind to everyone—families, staff, each other. That is what good care is.

Because my background is in education, people used to say I’m not a clinician, so how can I manage clinicians? You don’t have to be clinical, you have to have solid core values. Kindness and honesty are two values that are very important to me. I’m very good at acknowledging I don’t know everything. When I need to know about speech, I go to an SLP. If I need to know about occupational therapy, I go to an OT. As a leader, you need to be able to pull from different people to figure things out. Together, we can build remarkable teams and programs for everyone.

Friday, May 31, 2019

Friday bonus watch

This short film about living with a dad who has cerebral palsy, uses a wheelchair, and communicates with a pointer and letterboard, is now available on YouTube. My Dad Matthew is seen through the eyes of Elijah, who was then 14, and considers his father Matthew “a pretty normal dad.” 

Want to hear directly from Matthew, who's a professor in disability studies at Northern Arizona University? Read our interview with him. Happy Friday!

Tuesday, May 28, 2019

How to keep in touch

Do you want to read and watch family stories about parenting children with disabilities? And hear about what it's like to work in children's rehab? Plus get links to mainstream disability news and opinion pieces?  

In addition to checking the blog, you can follow BLOOM on Facebook.

Sign up to receive our monthly e-letter in your inbox (includes shout-outs to people and groups making the world a more inclusive place and our book shelf).

And check out eight episodes of our video series called A Family Like Mine, which features diverse parents raising children with a wide range of disabilities.

Monday, May 27, 2019

'We Carry Kevan' aims to inspire a new model of inclusive travel

By Louise Kinross

Kevan Chandler paid a visit to Holland Bloorview last week on a tour to promote his new book We Carry Kevan: Six friends. Three countries. No wheelchair.

We’ve interviewed Kevan twice. Once about his 2016 trip to Europe with friends who carried him in a modified backpack, and once as he planned a similar trip last year to China, where he visited care centres that support orphans with disabilities. Kevan lives in Fort Wayne, Indiana, has spinal muscular atrophy, and weighs about 65 lbs. It was awesome to meet Kevan in person.

BLOOM: What is the purpose of your new book?

Kevan Chandler:
The new book chronicles our adventures in Europe and then China, and everything building up to that, with a little bit of autobiographical information about my childhood. It’s a travel memoir of our journey so far, and within that it gives a lot of insights on my perspective about disability and our friendships and how that all ties together.

BLOOM: What message do you hope readers take away?

Kevan Chandler:
I think for folks with disabilities, it’s an encouragement to see someone with a disability living a full life, and in such a way that people can read it and say ‘Oh, yea it is possible. I can do that, too, in my own way. Our story is about how we figured out how to do things. We’re not telling people how, but saying you can figure it out with the people around you.

For the able-bodied community, the book is an insight into a world they may not be familiar with, and an encouragement to plug into that world. It’s an ice-breaker.

BLOOM: We spoke with you before you went to China. Now that you’ve actually been there, what was the greatest challenge?

Kevan Chandler
: There were a lot of challenges. We went to three cities and we had three very dynamically different experiences. Going into each city, we’d get settled, fall in love with the place and have to leave. We spent most of our time in care centres for orphans with disabilities—really getting to know the children and staff and very quickly building some life-long relationships. It was surprising how you can be somewhere for only four to five days and feel homesick for that when you leave.

BLOOM: I guess you were immersed in the children’s lives.

Kevan Chandler:
To see that 24-7 life of caring and loving for these kids, and being in that community, yes, we were immersed. And there was a physical toll as well. The first city we were in was a village in the middle of nowhere. The conditions were more difficult there. The other care centres were a bit more Western—spectacular, clean and well-equipped.

BLOOM: What did you do there?

Kevan Chandler:
We rolled around on the floor and played with them and held them and cuddled them and talked with them. They loved having us there. Most of the nannies and caregivers are women, so it took a little time for them to get used to a group of guys.

There was a language barrier and a lot of the children were non-verbal, so there wasn’t a lot of communicating with words. At first the guys brought me in and set me in my backpack with the kids, but the kids didn’t know what to think of the backpack. I decided it was better to lay me on the floor with them: ‘I’m here, I look like you.’ We talked with them and made noises and rolled around.

BLOOM: Did you take any of your backpacks with you?

Kevan Chandler:
We took two to donate. The staff would bring a child into the room to meet me, and one of the guys would get me set up in my backpack while the child watched. If the child responded well, we’d pull out the extra backpack. We’ve been working with Deuter to develop an adapted design. When we get the first order in this summer we’re sending 10 to the care centres, with a plan to send more.

BLOOM: What was the greatest joy of the trip?

Kevan Chandler:
Being with the kids was the greatest joy, and getting to experience it with my friends. You can imagine the heart of these guys to care for me like they do, so I can travel with them. We saw everything from the care centres to the Great Wall (see photo above) and the Shaolin temple.

BLOOM: Isn’t there a lot of stigma towards disability in China?

Kevan Chandler:
Yes. People with disabilities are hidden away by their families or the system. You don’t see a lot of people with disabilities. We saw one lady in a wheelchair in the market, and otherwise never saw anyone with disabilities in our three weeks there.

Something I was surprised by was that when we would walk through the market or the city, people—especially of the older generation—would stop and give us the thumbs up and shake the hand of whoever was carrying me. They seemed to have a lot of respect and appreciation for what the guys were doing.

We knew there would be a language and some cultural barriers. But we hoped that the spectacle of one guy carrying around another guy would be a visual that would inspire and encourage people.

BLOOM: How often do your friends switch off with carrying you?

Kevan Chandkler:
We try to do a 45-minute switch, that way no one gets completely worn out. Something really neat was that we had other people, outside of our team, carry me as well. At the care centres, a couple of the workers were big guys who said they’d like to help out, so they took turns when we were in the market. Our translator, who didn’t come to carry, also carried me as well. We had only brought three carriers, so it was cool to incorporate more people.

BLOOM: You have a non-profit called We Carry Kevan. What is the mission?

Kevan Chandler:
Our mission is to redefine accessibility as a cooperative effort—people helping people, and getting involved with each other’s lives. Right now our main focus is implementing the backpack, and encouraging people who can, to use it. It will be available this summer and is a one-size that fits up to 70 lbs.

BLOOM: What does it cost?

Kevan Chandler:
It’s US$375. It’s completely adjustable and versatile for different sizes and needs. For the past two years we’ve been developing it with Deuter. We‘ll work with a family to customize it to each individual. Managing that, and with my book coming out, has been a full-time job.

BLOOM: What makes your travel unique is the participation of really close friends. How can that work for kids who don’t have friends?

Kevan Chandler:
I talked to my mom about it recently, and she said when I was diagnosed she and my dad decided they would raise us as normal as possible (my sister also has spinal muscular atrophy). They knew that would take a lot more work, but they wanted us to be involved in the able-bodied community.

What they ended up doing was that we were out in the world, and we also invited the world in. That introduced that idea of community. It normalized for our community the idea that my sister and I, we had needs, and people could help out. It taught us not just to ask, but to invite people into that. It also taught our immediate community how to respond. As I got older, it became more my responsibility. It’s going to be uncomfortable, but you have to put yourself out there. It’s worth a try. Everyone may not get it. But the people who do get it are going to be awesome.

You can follow Kevan at We Carry Kevan. The group is working on organizing international shipping for its adapted backpacks. If you have any questions, please e-mail at wecarrykevan@gmail.com. The photo below was taken at one of the care centres in China where kids got to try out the adapted backpack. Check out Kevan's Ted Talk.

Tuesday, May 21, 2019

'I'm trans because that's who I am'

By Louise Kinross

Logan Wong is known for his stylish bow ties. But in this photo, he's
wearing a shirt with the colours of the transgender flag: blue and pink, the traditional colours for boys and girls, and white, representing people who are intersex, transitioning or a neutral or undefined gender. Logan is a transgender man who has cerebral palsy and grew up receiving services here. He's also the co-chair of Holland Bloorview’s youth advisory, and works as a host to inpatients in our teen lounge. He’s going into his fourth year of social work at Ryerson University. We talked about his experiences and how Holland Bloorview can better support young adults like him.

BLOOM: What does it mean to be transgender?

Logan Wong:
It’s when the gender you’re assigned at birth doesn’t match with what you believe to be your gender. Trans is an umbrella. It can mean you’re a guy, you’re a woman, or you’re both. There are new labels coming up every day.

BLOOM: How did you recognize you were transgender?

Logan Wong:
I came out publicly last September. But I’ve known I was trans since I was seven. When I was that age I presented as a male, and I was really self-conscious about my body. I don’t think anyone—including me—recognized it as being trans at the time. I thought I liked boy stuff, and I wouldn’t leave the house in a dress.

I have two older brothers. We have a home video of my birthday party when my parents gave me a Barbie. I threw it on the floor and started playing with my brothers’ hot wheels.

My parents recognized how terrible I felt about myself, and how much of a struggle it was for me. And my mom got better at buying gender neutral clothes and clothes that weren’t pink.

BLOOM: What’s been the greatest challenge?

Logan Wong:
Definitely finding accessible and trans-friendly health-care, and my name change stuff and government forms. Changing everything from my name on my insurance to my name at school are examples.

I’m lucky to have finally found a doctor that is really educated in both transgender stuff and disability—which is really rare. I go to Parkdale Community Health Centre, and I had to transfer my whole primary care over there to be able to access testosterone. Before that, when I saw my regular family doctor, they were going to refer me to a hormone specialist. But there was a year wait list.

BLOOM: What’s been the greatest joy?

Logan Wong:
How much pride I have, and how much I can use my experience, both as trans and having a disability, as representation for both communities at the same time. I really appreciate that opportunity.

BLOOM: What advice would you give parents whose disabled child is questioning their gender?

Logan Wong:
I would say listen to what they have to say about themselves. Don’t make assumptions about what they’re thinking. Let them express themselves the way they want to.

BLOOM: Did having a disability make it easier or harder to accept your transgender identity?

Logan Wong:
In some aspects it made it easier. I’m in a wheelchair and no one expects me to stand up and pee. So I don’t have to worry about facing harassment in the bathroom. I usually use a single stall bathroom.

Growing up, my life didn’t revolve around the fact that I had a disability. My parents believed that my life shouldn’t just be about therapy. That made me willing to explore other parts of my life and identity, so it made it easier for me to recognize who I am.

BLOOM: Is there anything about having a disability that made being transgender harder?

Logan Wong:
Making people realize that I’m not trans because I have a disability, or because of other things that happened in my life. I’m not trans because I’m oppressed by other things, or because I’m attention-seeking. I’m trans because that’s who I am.

BLOOM: How does the disability community view transgender people?

Logan Wong:
I definitely find more community within the trans and queer community. I do associate with the disabled community, but I’ve found able-bodied friends who are trans and queer are way more accepting of my identity. I think it goes back to some people thinking that I’m trans because I want attention.

I do feel I’m more welcomed in the trans and queer community. They don’t see my disability as a thing. It’s part of my identity, of course, but they don’t emphasize it as much as it’s focused on in the disability community.

Do I necessarily tell new people with disabilities that I meet that I’m trans? Not necessarily.

BLOOM: What would you like our staff to know about how they can best work with youth who are transgender?

Logan Wong:
Ask them what their name is, and what pronouns they use. It’s very simple. Recognize that the documents you get might not have the name that they prefer on it. Don’t take the paper as the most important thing. Value what they say.

BLOOM: Have you ever received health care that wasn’t respectful or affirming of who you are?

Logan Wong:
I’ve only had one experience, and it was recent. My cerebral palsy specialist at an adult hospital was blatantly transphobic.

BLOOM: In what way?

Logan Wong:
He refused to refer to me with my now legal name, because he knew me before. I’ve chosen to not go to that person since. I called and explained that I was transferring to another specialist, because I don’t want this happening to another person.

BLOOM: What could we do at Holland Bloorview to better support youth who are gay, transgender or bisexual?

Logan Wong:
I like the steps the equity, diversity and inclusion committee is taking.

BLOOM: Are you on that committee?

Logan Wong:
Yes. They’ve encouraged staff to put their pronouns in their e-mail signature, which is really important, and created gender-neutral bathrooms. Instead of using mom and dad, just say parents. We have to think about it, not only in terms of children and youth, but the parents who are potentially trans.

BLOOM: What about creating some kind of peer support here for clients who are transgender?

Logan Wong:
I think support groups, with the right intention, can always be a good opportunity to express the values of Holland Bloorview.

BLOOM: Why did you decide to be a youth leader?

Logan Wong:
I decided to become a youth leader before I publicly transitioned. I wanted a platform to advocate for people with disabilities, and specifically youth voices. I feel we don’t hear enough from youth about their opinions on what’s happening in the disability community, or politics, or the world.

BLOOM: What are your hopes for the future?

Logan Wong:
I’m hoping to be a social worker. I haven’t confirmed it yet, but I’m hoping my placement will be at the Ronald McDonald House. I’ve gained a lot of clinical experience in my work here, and I’d like to continue that in another space.

After I graduate I’m thinking about master’s programs, both social work and women and gender studies.

In Toronto, there are lots of trans-specific supports at The 519. 

Friday, May 17, 2019

In nursing 'everything good comes from the heart'

By Louise Kinross

Shevonne Thatham is a registered practical nurse at Holland Bloorview working with children who have complex disabilities and use ventilators to breathe. She just won the DAISY award, which recognizes a nurse that uses a strengths-based approach and combines top-notch clinical skills with deep connections with children and families. “Families like my realness,” Shevonne says. “A lot of people say I’m the Oprah on the unit, because people open up to me. I’m able to make them feel welcome and warm.” 

BLOOM: How did you get into this field?

Shevonne Thatham: I never had a thought about working in pediatrics until I did my consolidating year on a student placement here. I knew I wanted to be on a respiratory unit, and I landed here, and the kids just captured my heart. Often there weren’t parents at the bedside, and there was a sense of urgency, that these children needed care, love and compassion. This is my calling.

BLOOM: How did you choose nursing?

Shevonne Thatham:
I was inspired by my mom. My mom is a practical nurse working in geriatrics. I used to go with my dad to pick her up on evenings, and we would go a little early so she could introduce me to her clients. I was always that caring person that wanted to help out. I was a little kid listening to their stories about how they got there. That sparked a flame inside me that never faded.

BLOOM: What’s a typical day—or night—like for you?

Shevonne Thatham:
I do rotating shifts. I like nights because you’re the nurse, the respiratory therapist and the doctor—you do it all. The clients I work with require total care. In the morning, we prepare their meds, administer their feeds, and get them up in their chairs. They may wear devices like ankle-foot orthoses. I’m their hands, their feet, their eyes, their ears. Then, I’m with a child for the day, whether they go to therapies, school or off-site. They’re complex, so I support any medical needs they have. I’m their medical parent. For children who have a tracheotomy, they may need a suction to maintain their airway. I ensure their [feeding] tubes are running. 

BLOOM: What is it like working with this population?

Shevonne Thatham:
It’s about empowering the families and giving them that hope and courage that their child will make it home. Some of these kids were diagnosed at birth, so it was life changing for their parents. It’s giving them that hope that everything is okay, despite their differences. You can still have a life and a family.

BLOOM: You must develop very deep connections with these kids.

Shevonne Thatham:
Yes. They can’t communicate with me, because many of them are non-verbal. But I know exactly what’s going on with them. Non-verbal communication is key, and learning to read them—whether it’s an elevated heart rate or a grimace in their face.

BLOOM: What’s most challenging about this work?

Shevonne Thatham:
Advocating for someone who is non-verbal. Every child is different. We’re at the bedside and we’re the first level of contact with these kids. Sometimes it’s hard for physicians, who are more focused on the medical, to understand something may be about comfort. When I advocate, it’s not what I want, it’s what the client needs.

Another challenge is that when the family comes to Holland Bloorview, the parents are in that grieving stage. They’re dealing with a lot of anger and emotions. With families, sometimes I need to be a social worker, which is not my field. I need to think about how I say what I need to say in the appropriate way, that is caring and compassionate as well. Sometimes it’s sitting with parents and if they’re crying, I’m crying.

BLOOM: What are the joys?

Shevonne Thatham:
There’s so much. Doing what I love to do. Seeing a smile on a child’s face or parents saying thank you. Knowing that I’ve made a difference or that I’m helping to better their chances of going home quickly. Advocating. Teaching families and teaching clients who are able to do their own self-care. Aiding in their everyday life.

BLOOM: What emotions come with the job?

Shevonne Thatham:
Frustration. It’s hard to understand, sometimes, what is going on with a client. Happiness. Moments of happiness. Moments of anger, because why? You just think ‘Why is this happening to these families?’ Being able to be a person in their lives, so when the family comes back here later for respite, the child remembers you, and you know you left an imprint in their life.

BLOOM: How do you manage those emotions?

Shevonne Thatham:
I’m a spiritual person, so I would pray for my families and for myself. I bring everything to God. I also use music, driving home, to debrief.

BLOOM: What have you learned from families?

Shevonne Thatham:
 They’re taking on a new job that they’ve not signed up for, or gone to school for. And in the end, they’re able to be the parent, the nurse and the doctor for their own child. Families have taught me that they’re strong people.

BLOOM: If you had to give yourself advice on your first day, from where you sit now, what would you say?

Shevonne Thatham:
Put your heart into it. Everything good comes from the heart. If this is where you want to be, show it, and it will manifest a beautiful outcome.

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

Shevonne Thatham:
I think we’re going in the right direction, and since I got here there are more opportunities for kids who have a trache to do normal daily activities. I’d like it if we had a really shallow end in our pool, because despite having a trache, a lot of our kids want to be in the pool. It would be great if we had some sort of protection for the trache, so that they could go in the water. 

Thursday, May 16, 2019

Collective advocacy must replace mother-led campaigns

By Louise Kinross

A decade of activism by British mothers of children with disabilities hasn’t produced positive change in the lives of disabled people, write two researchers in a fascinating article this month in Disability and Society. The authors—Katherine Runswick-Cole and Sara Ryan (photo above)—are disability studies scholars and parents to children with intellectual disability. “Despite the efforts of countless mothers of disabled children, and others, over the last 10 years, the outlook remains bleak,” they write. “We live in a world now where our children with learning disabilities will die on average 23 to 29 years before their peers (NHS England 2017), startling evidence of the limits of advocacy for, with and by learning disabled people.”

We interviewed Sara in 2015 about the preventable death of her son Connor Sparrowhawk, an 18-year-old with autism and seizures. In 2013, Connor drowned alone in a bath in a National Health Services treatment unit. The NHS trust that ran the unit initially attributed his death to natural causes, but his parents called for an independent investigation that found his death preventable. Last year, Southern Health in Britain was fined just over $1.8 million dollars for this preventable death.

Sara and Katherine, who are at the University of Oxford and the University of Sheffield respectively, argue that campaigns based on mother advocacy have failed for generations. Yet every new generation, not looking back, insists they’re pioneers in the cause. The authors suggest we need to move away from mother advocacy—which is undermined by a culture of mother blame, focuses on individual families vs. systemic problems, and pits mothers of young children with disabilities against mothers of adult children—to a new collective activism that brings all sorts of people together.

BLOOM: You note that many parents of children with disabilities believe that the general public just doesn’t understand the discrimination their kids face, and that if only they were made aware, changes would occur. But you don’t buy into that. You say you’ve been doing this work for 10 years and conditions in the U.K. for people with disabilities have only gotten worse.

Sara Ryan:
Yes. There was a good chunk of solid policy in the U.K. at the beginning of the 21st century that engaged with learning-disabled people as human beings who we need to value, and who have aspirations. That positive movement has come to nothing. Things have gone backwards.

Ten years ago, we thought we were pioneers in raising awareness and we’d sort everything out. We didn’t realize the generations of parents and mothers who had done the same things we were doing. We disempowered the people who came before us.

BLOOM: You point to something I’m very aware of—which is a split between young parents of kids with disabilities and older parents of adult children, who have been advocating for a long time. I know when my son was young, I didn’t want to hear about the experiences of adults with disabilities because I wanted to focus on his unlimited potential. I wanted to believe we had the capacity to make big changes.

Sara Ryan:
As young parents you’re totally fresh, and you think things won’t be as bad for your children.

BLOOM: In a way, you don’t want to hear about the real struggles of older parents.

Sara Ryan:
I understand that. You’re facing something unexpected and unfamiliar, and you have a lot to grapple with. But it’s really unhelpful in terms of social movements and change if the movement is inherently fragmented when people break off when their children go into adult services.

BLOOM: It’s so short-sighted, to turn our backs on the families who have done the hard work before us.

Sara Ryan:
It’s also sustained by big charities who almost 'groom' the younger parents to make them feel they’re pioneers in leading the way. These charities have been saying the same things for 40 years, and it’s not in their interest to say it hasn’t worked. They present their campaigns as something new for parents of young children, while erasing the work that’s been done in the past.

BLOOM: I guess promoting a campaign that focuses on young children—and the sense of possibility inherent in them—is more likely to be well received than one that focuses on the realities for adults.

Sara Ryan:
Young children are cute. But there’s a change happening with young mothers today. There’s one mother on Twitter who posts a photo of her young son with Down syndrome beside the facts about the early death he faces. She wants people to think about that, and it’s really powerful.

BLOOM: You talk about mother blame in your article—whether we’re blamed for our child’s disability, or blamed for not doing enough or the right therapy, or blamed because our children are costly. How does mother blame influence the efficacy of social justice campaigns by mothers?

Sara Ryan:
That’s an interesting question. In our original paper we were saying that mothering is an invisible endeavour, but by token of having a disabled child, your mothering becomes visible. You’re seen as a poor mother due to your child’s unruly behaviour.

When we began our campaign #JusticeforLB [LB stands for laughing boy, a name Sara used in her blog about Connor], there were attempts by the trust, the local authority and NHS England to blame me, or to cast me as an irrational mother, to diffuse the strength of our arguments. But what was unique about our campaign was that over time, the demand for answers became a collective endeavour by a diverse range of people. Most had never met us. That reduced the potency of the 'mother being the problem,' so our campaign was very effective.

BLOOM: You refer in your article to a new form of advocacy called unmothering. Can you explain?

Sara Ryan:
It’s about loosening that expectation that the child and mother bond is somehow essential, and allowing other people to step up and be involved in a campaign—to take part and speak and act. If the campaign is just about a mother, it’s an individual focus, which is necessarily weaker.

BLOOM: You write that unmothering doesn’t devalue mothering, but disrupts ‘the idea that the mother alone is responsible for raising children.’ How was the #JusticeforLB campaign an example of unmothering?

Sara Ryan:
It was the collective approach of it. We ran a campaign within the campaign called 107 days of action, to mark every day Connor had been in the unit before he died. We asked people to adopt a day to fundraise for our legal fees, or to raise awareness. We had a teenager who canoed 100 km to the House of Commons with a photo of Connor on her back. We had a Brownie pack in New Zealand that drew pictures of buses, which Connor loved. We had people who did lectures or sports events in Connor’s name. People adopted a day to do cake sales. These activities had nothing to do with mothers, and in most cases they were undertaken by people who didn’t know Connor or our family.

BLOOM: How did you get people who weren’t personally invested in your family to participate?

Sara Ryan:
I’d been writing a blog about Connor, and early on it was really funny stories about the hilarious things he did. By the time he died, so many people were reading the blog, which was anonymous at the time, that they felt they knew him. That made the impact of his death more powerful. He wasn’t a learning disabled person. He was a fully fleshed out member of our family, and he was very funny. The fact that he was a beautiful young man with funny stories was what took hold.

BLOOM: Yet you note that storytelling by mothers hasn’t traditionally produced results.

Sara Ryan:
I think stories are important, but I don’t think they make change. The Disabled Children’s Partnership recently launched a new campaign called #TheSecretLifeOfUs to raise awareness of the challenges faced by families. But the campaign is premised on the mistaken assumption that the lives of disabled children are hidden.

BLOOM: Yes, you note that children being excluded from school and bullied, and the isolation and poverty of families, has been well documented.

When Connor died, the NHS trust first blamed his death on him, saying he had died of natural causes. Then they shifted to criticizing you.

Sara Ryan:
A day after Connor died, a document called a briefing on the mother’s blog was produced and circulated, which suggested that I might be troublesome because I’d written that Connor had had an earlier seizure. Blame is completely at the heart of it. The biggest example was before Connor’s inquest, our solicitor read transcripts of evidence given by staff. They said things like ‘My relationship with Dr. Ryan: I was very scared of her. She was unusual.’

BLOOM: As opposed to staff testifying as to why it was that Connor ended up behind a closed door in a bath where he had a seizure?

Sara Ryan:
I had said to staff ‘Connor is having seizures.’ It kept coming up in the inquest that the defence for each of the staff members was that the mother was so difficult it was impossible to provide good care to Connor. When Connor was in the unit I wouldn’t have dared to be angry, for fear of retribution. We were so worried about Connor.

Read the annual reports of the British Learning Disabilities Mortality Review.

Monday, May 13, 2019

For many, Joanna is the face and voice of Holland Bloorview

By Louise Kinross

Joanna Miedzik is an institution at Holland Bloorview. She’s the bright smile that greets you at reception, and the kind voice when you call in with a problem. Joanna has an encyclopedic knowledge of the hospital, its staff and programs. She grew up here as a child receiving services in our spina bifida clinic. Today, parents regularly turn to her for advice on raising their child with a disability. Joanna has worked at Holland Bloorview for 20 years. As a receptionist, she’s our point person for families, staff and visitors who need information or help.

BLOOM: How did you get into this field?

Joanna Miedzik:
I’ve been here all my life. I came to Bloorview when I was nine. My family originally lived in Poland, and then we travelled in Syria for a couple of years and lived in Damascus. Then we moved to Buffalo, where I had a lot of my surgeries at the Shriner’s Hospital. Some friends of my parents told them about the medical treatment I could get here at Bloorview, so my family moved here.

My parents gave up living in their own country in order to give me the opportunity to live in Canada, where there are more opportunities for me to be who I am today.

Bloorview has always been home for me. By working here I felt I could give back to everyone what they gave to me. I’ve had help from almost every department here, and every single person that was with me growing up has had an unbelievable impact on me and who I’ve become.

I always wanted to work with children and be a helper. At one point I wanted to be a social worker, but that didn’t work out for me. There was no question when I was looking for work that this was the only place for me.

BLOOM: What is a typical day on reception like?

Joanna Miedzik:
Very unpredictable! I open up shop in the morning and get reception prepared for the day. We have daily tasks we need to complete. The mornings are pretty hectic. We often have lots of students come in, and they need help in getting themselves settled for their parking.

Then the calls start coming in. There’s a lot of action—people-wise and phone-wise. It’s a big juggling act most of the time.

There’s a lot of multi-tasking, and being a detective to put information together to assist people. We have a lot of enquiries about Holland Bloorview. I have to be on top of it, and figure out who is the best person to help with a particular question. I need to focus on the roles that everyone plays at Holland Bloorview, and how I can redirect people.

BLOOM: Being a former client must be a huge advantage.

Joanna Miedzik:
Yes. To come into this role without that background would be extremely overwhelming. I’ve spent half of my life here. I’m 42 and I started when I was nine. Certain pieces of knowledge come naturally to me, because it was part of my everyday growing up. Sometimes I don’t even realize what I know. When I don’t have an answer, I call around and ask questions of my colleagues to put together the information.

BLOOM: What are the joys of the job?

Joanna Miedzik:
To see everybody with a smile on their face in the morning. To see the children go by on their bicycles on their exercise routine. I love to have conversations with the parents. A lot of parents come to me to chat and vent, and have a human body to listen to them when they’re overwhelmed.

I feel that is very special. I’m able to be on their level and have a conversation that’s not artificial or scripted. I’m giving them my heart and my soul. When I see the pain and the tears I can actually say ‘I’ve been there and I’ve cried, too, and I’ve had my frustrations.’ And we share our stories. I always try to turn their negatives into a positive. I always tell them that that they’re in good hands, and everything that’s possible will be done for their child here.

It’s nice to know I can have true heart conversations with these families. I’ve almost fulfilled my dream of wanting to be a social worker—not on paper, but I get to sit on reception and be that helping hand in a different way.

BLOOM: What are the greatest challenges?

Joanna Miedzik:
I’m the first person that people see, and sometimes I get the brunt of their frustration. Negative energy can surround me, and I have to remember to ground myself and not let it overwhelm me.

BLOOM: I guess whenever anyone—staff, family or visitor—has a problem, they call you!

Joanna Miedzik:
There are so many people who are hurt and frazzled and angry and sad, and sometimes it gets dumped on me. I have to back up and say ‘this is not about me.’ I can’t take it personally.

BLOOM: What qualities does someone need in your role?

Joanna Miedzik:
Patience, empathy and a positive attitude. You have to be good at abstract thinking for problem solving. Sometimes it’s like being a private detective, where you put the puzzle pieces together.

BLOOM: I think you probably have a unique window into hospital life from where you sit.

Joanna Miedzik:
I definitely have a revolving door around me. Some people are waiting for a taxi, or a parent is waiting for their child to get out of therapy. They come to chat. You do hear about their pains and their thoughts and their frustrations and their fears.

You also have the opportunity to share some pretty amazing moments. Like when you build a rapport with a mom over six months. And one day she comes downstairs to your desk, squealing with excitement, to show you her phone and a video of her son taking his first steps. And you cry together and hug. ‘I get it,’ I tell her. ‘I remember when I took my first step. I get it, and I’m thrilled for you.’

Sometimes an inpatient mom comes because she’s upset that her son’s stay has been extended for another six weeks. I tell them that an extension is progression, that the physicians see potential for more improvement.

BLOOM: If you could change one thing about Holland Bloorview, what would it be?

Joanna Miedzik:
It may not be realistic, but my wish for Holland Bloorview is to treat our clients longer. When I finished up here and was thrown into the real world, it was absolutely horrifying. I didn’t receive the help I needed. I was out there and I was lost and we had no support and no follow-ups.

So it would be a dream for Holland Bloorview to take the children they’ve cared for all their life, and not give up on them at the age of 18. Extend the care into early adulthood to ensure clients are psychologically and physically safe, and know their routine, and know the doctors they have to see on a regular basis.

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

Joanna Miedzik:
I think Holland Bloorview is doing a pretty amazing job as it is. When I was at Bloorview, we didn’t have many of the support groups for kids and siblings, and extra-curricular activities, that you have now. I think Holland Bloorview is heading in the right direction with those groups and sessions.

I’d love to see more help for the parents. And I’d like the opportunities to be for families with all diagnoses, not just for a particular disability. Every disability is valuable, and deserves the same kind of attention.