School volunteer honours his daughter's memory

By Louise Kinross

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

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

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

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

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

BLOOM: Some of the children don’t speak.

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

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

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

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

BLOOM: Can you tell us a bit about Anisa?

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

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

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

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

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

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

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

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

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

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

Learn more about Holland Bloorview’s volunteer program.

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Community keeps this volunteer coming back

By Louise Kinross

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Learn more about our Family Leadership Program.

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Instead of changing her child, a mother changes herself

By Louise Kinross

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

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

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

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

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

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

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

By Louise Kinross

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

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

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

Bruno and other parents want to change that.

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

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

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

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

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

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

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

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

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

Bruno and Vivian shared these reflections that may be helpful to other parents whose child has died:

• There is no road map for grief, no time line or 12 steps. It’s individual, and you have to accept that your journey is going to be that way. It will change from day to day and year to year.
• Anniversaries, especially in the first year after your child dies, are very hard.
• Grief can ambush you when you’re least expecting it.
• Talking to other parents who’ve lost a child is soothing. You don’t have to explain anything, and if you fall apart, it’s okay.
• Counselling helps.
• Find ways to honour your child. Vivian’s family raised money for a multi-sensory room in the school her son went to, and where her daughter still attends. Bruno’s family participates in the Hike for Hospice to make people aware of the amazing care they received at Emily’s House.

Advanced care planning with a palliative care team can help families build beautiful memories with their child. “We spend so much time going to appointments, doing therapy, and for the more complex kids, just feeding them, that we don’t get to have family time,” Vivian says. “We need to be encouraged to not feel guilty about putting that aside, so we can have fun times as a family.” Bruno notes that his family cherished Thanksgiving, Christmas, birthday and Easter celebrations with Matthew while he lived at Emily’s House.

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

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

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Rana finds her voice in advocacy

By Rana Nasrazadani

“You’re not ready for university.”

A staff member said this to me in high school, in front of the whole class. These words, from a person whose job was to guide and support students, had a profound impact on me. Sometimes, they still linger.

It wasn’t these words alone that affected me. Staff had discouraged me from pursuing post-secondary education throughout high school. I believe they had a limit about how far I would go. When I pushed the limit, they made it more difficult. I was walking on eggshells. I felt like I had tougher expectations put on me than my peers. The pressure to live up to these standards increased each year, but without the supports I needed. It seemed like no matter what I did, it was never enough.

As a teen with a disability, my life was already quite stressful: appointments, physical therapy and surgeries were not out of the ordinary. I was also on a competitive swim team, practising multiple times each week. On top of this, I was a student with a clear plan to graduate in four years and continue my education.

When the staff member said I wasn’t ready for university, I didn’t say anything. In high school, I didn’t want to show any vulnerability. At the time, I felt I needed to manage the extra pressures related to my disability while making everything look effortless. But in reality, I was struggling.

I started to doubt myself. I had no reason to worry, as I was meeting the requirements to go on to university. But discouragement plays with your self-confidence. I worried about other people’s approval, and more so, their disapproval of my decisions. I began to question whether I should apply to university.

Then I asked myself “Why am I letting this happen?” Far too often, people with disabilities are seen as incapable, before being given a chance to participate as an equal in society. I didn’t need the approval of school staff to go to university.

I had a strong support system of family and friends and their encouragement to reach my goals outweighed those that discouraged me. Without telling school staff, I applied and got accepted to university.

I’m now a student at York University, studying towards a future in human rights law. As a former ambassador for Holland Bloorview, I always knew that I had an advocate in me. More recently, I got involved on the youth advisory committee of the Office of the Provincial Advocate for Children and Youth. I was part of­­­­ the We Have Something to Say Project, which brought together the voices of youth with disabilities from across Ontario to work towards a barrier-free future. I shared my story about some of the obstacles I faced in high school (p. 64).

Four years ago, if you’d asked me if I’d be where I am today, I would have had a hard time believing it. Opening up about these experiences has been very difficult. It took a while for me to gain enough confidence to tell my story on an open platform, but once I was ready, it was like a weight was taken off me.

Over time, I’ve learned that many students go through similar experiences. They feel the need to “cover up” their struggles because of social pressures and ideals. It can feel like no matter what you do, it will never be enough.

To those reading who are going through a similar situation, there’s nothing wrong with saying you’re struggling. Don’t bottle it up. I encourage people to talk about it. Right now it may be hard to see the positives, and it might feel like your situation isn’t getting better, but have confidence in yourself, trust your judgment and keep pushing towards your goals.

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From patient to bioethicist, Dolly comes full circle

By Louise Kinross

I met Dolly Menna-Dack in 1999 when we interviewed her as a youth role model in BLOOM (then called Connections). At age three, Dolly, who has juvenile rheumatoid arthritis, began coming to Holland Bloorview three days a week for therapy. From age eight to 12 she came every day for school and therapy. At 12 she spent eight months here as an inpatient following surgery. “Greg Steffler taught me to drive a stretcher, known as a ‘banana cart,’ which is even more difficult than driving a car,” she says. At 16 she was a member of our first youth advisory council, and volunteered for many years throughout the hospital. For eight years Dolly worked as a youth facilitator in our LIFEspan clinic supporting youth who are transitioning to the adult world. Last summer Dolly graduated with a master’s in health sciences in bioethics. In February she was hired as Holland Bloorview’s clinical bioethicist.

BLOOM: How did you get into the field of ethics in children’s rehab?

Dolly Menna-Dack: I have arthritis and because of that I was personally involved with the health-care system from a very young age. I started off my university career in human biology, planning to go to medical school. But then I discovered I was really interested in how we make healthcare decisions.

I wanted to help kids and youth understand that they can participate in discussions and be empowered to make decisions about their healthcare.

I’ve always wanted to be a support system for children and youth as they think about those big health-care decisions. Most kids don’t make decisions on their own, they make them with family, friends and the health-care team. The pediatric health-care team is like a long-term member of the family, and disability isn’t something to be fixed or figured out, it’s to be explored and understood together.

BLOOM: What was it like when you came here as a three year old?

Dolly Menna-Dack: My first memories all centre around the old Pat pool and the rainbow over the pool. My first memories include Joan Ferguson, who was my first physiotherapist [and later our vice president of programs and services]. From Grade 3 to Grade 7 I came here every day for therapy and school. It was like home. It was always a part of my normal and was never strange.

BLOOM: Did you identify any ethical issues here as a child?

Dolly Menna-Dack: I could see that not all of my friends that came for regular therapy knew as much about their health care as they could have. I recognized that my mom had been making an effort to make sure I listened and was present during conversations. My friends that didn’t have disabilities knew even less about their health. They didn’t put any thought into answering ‘How are you?’ For kids with disabilities, ‘How are you?’ is an evaluation. You’re evaluating what type of answer you’ll give and how that answer may impact your day. If I say ‘I have pain’ or ‘I’m not feeling well’ or ‘my splints are hurting’ that can change what I do that day.

BLOOM: What are common ethical issues in children’s rehab?

Dolly Menna-Dack: An example of a common issue is consent and capacity. It’s really about when a clinician proposes a treatment or a plan to a family, they’re tasked with evaluating if the child understands and appreciates the consequences of the options given to them.

There can be times when the child and family may disagree about the course of action, or the child and team disagree, or the team members disagree among themselves.

BLOOM: It sounds very black and white—that either a child is capable of making decisions or not—whereas it seems like there would be a lot of grey area.

Dolly Menna-Dack: Kids need to be a part of the discussion, whether or not they’re making the decision. The beauty of pediatrics is the dance of assent—of ensuring that a child is enrolled and empowered to say when they’re not sure about the treatment. We want to encourage children and youth to express what their concerns are so they can be better prepared. They need to participate.

BLOOM: I can’t really ask you about your typical day as bioethicist as you're only just starting. 

Dolly Menna-Dack: A big part of my role will be providing ethics education for staff and the Holland Bloorview community, leading the bioethics forum and ensuring teams have someone who is easily available to them to talk about ethical issues. My plan is to engage staff to highlight how ethics can support them when they encounter moral distress. I want them to view ethics as something that will help them help clients and families.

The important lens I’m bringing to this role is multi-faceted and grounded in my experience being a user of the health-care system in pediatrics and adult care. I've also worked with clients and families for many years both here and at Toronto Rehab. I believe that’s going to guide my work and make me relatable to our clients and families. It’s a rare gift to understand the roles of everyone who may wish to have the support of a bioethicist.

As Dolly is just starting her bioethicist job, we'll check back in six months to learn more about what happens in a typical day.

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'We can't fix what we don't know'

Kimberley Siu-Chong (centre) is Holland Bloorview’s touchpoint for feedback from families. As client- and family-relations facilitator, she collects input from children, teens and families about what we’re doing well and where we need to improve. “The Patient Declaration of Values is my bible,” Kim says. “It was developed with families and is based on the values of quality of care, partnership, respect and information sharing. When I hear a family’s story, I map their experience through that lens.” BLOOM talked to Kim about her work as a facilitator between families and staff.

BLOOM: How did you get into children’s rehab?

Kimberley Siu-Chong: Can I tell you my meandering path? I did my undergraduate studies in bioethics and criminology. Then I went into law and specialized in social justice because my passion is human rights advocacy.

BLOOM: Why were you interested in human rights?

Kimberley Siu-Chong: Ever since I was young, I’ve had a visceral reaction to unfairness and injustice. When people aren’t treated as people—when an aspect of your social identity results in oppression—that made me really angry, and I wanted to channel that anger into something productive to help others.

I practised law briefly, but I realized it wasn’t for me. The legal system is designed to be adversarial and that isn’t my personality. I’m more conciliatory.

From there I became a legal writer and editor and worked for four years at a legal publication company that specializes in employment and labour law. That job gave me the opportunity to educate people about their rights in the workplace, but it lacked a lot of human interaction.

After that I became a family mediator and did divorce mediation. The families I worked with came to me at a very vulnerable time. I worked to help people identify their shared interests and come to an agreement, often in emotionally charged situations. It was very rewarding work, but I didn’t feel like I was doing direct child advocacy and I missed that piece. It was children that I was interested in, and working with families.

My passions are education, mediation, advocacy, writing and policy. I wanted to find a job that combined all of those. I never thought I would end up in a hospital!

Through my research, I heard about how hospitals have ombudspersons. Then I saw a posting for Holland Bloorview. My sister is a nurse and she did a rotation on our brain injury unit, so I’d always known about the hospital. The ad said Holland Bloorview was looking for people with a masters in health care. I didn’t have that, but when I looked at the description, I knew I had transferable skills and my heart and passions aligned with the work. I knew I had something to contribute and I had to throw my hat in the ring.

BLOOM: What is a typical day like for you?

Kimberley Siu-Chong: My role is to listen and collect all types of feedback. I have an open-door policy, so anyone and anything can walk through my door. It could be a consult with a staff member who says ‘I’m experiencing a relationship challenge with a family, can we talk about it?’ Or perhaps a manager says ‘We have this family meeting coming up, and we imagine there may be some contentious issues. Could you facilitate it?’ Sometimes a clinician brings a family down to see me. Or a family may knock on the door and say ‘I have a concern.’

In addition, I lead conflict-resolution training for individual staff and teams. It’s been incorporated into the core competency education program for all of our inpatient nurses.

I also manage Spotlight Awards from clients and families, so I may receive a heartfelt letter recognizing a therapist or nurse. My role is neat because I get to read every single compliment that comes through this hospital.

BLOOM: When feedback is positive, what kinds of things do you hear?

Kimberley Siu-Chong: There’s such a range. One client submitted a card saying ‘I want to recognize my primary care nurse because she’s like a mother to me.’ A Youth at Work participant wrote that their supervisor ‘made me know me more as a person and learn more about myself.’ There are comments like ‘They listen and care about what matters to me, and they give me a voice.’ Or ‘I was going through the most devastating experience, and the team was there for me.’

Sometimes people think Spotlights are just for frontline clinical staff. But one of our most nominated staff members is Berthe Nabico, who cleans the accommodation suites where many inpatient families stay. They’re often here for a long time and she builds relationships with them. One family wrote a long, heartfelt letter about Berthe and said ‘She taught us how to hope.’

BLOOM: If staff only knew the power they have to help families feel heard and valued.

Kimberley Siu-Chong: We each have that opportunity, across teams and at different levels, to change and affect people’s experience with every interaction—in both positive and negative ways.

BLOOM: I know you track and trend complaints.

Kimberley Siu-Chong: People view a complaint as a negative thing, but it’s not. I can hear from families who love this place, but they have one area of concern. We can’t fix what we don’t know, so this is an opportunity to partner and improve. We need to create an environment where feedback is welcome.

BLOOM: I guess if you weren’t getting complaints, it wouldn’t necessarily be a good thing.

Kimberley Siu-Chong: No, if complaints are low, that’s a flag to me that maybe parents are scared to come forward, or feel the process is futile, or don’t know that it exists. The families who come forward believe that their voice matters, that we care, and that their concerns are going to translate into change.

Our families and kids have a lot on their plate, so when they say ‘I want to share my story,’ I’m so honoured by that. These are very personal stories, very emotional stories.

BLOOM: Do we tend to get common complaints?

Kimberley Siu-Chong: Communication is generally number one, here and for hospitals across Ontario. 

A family may say ‘I had questions that weren’t answered,’ or ‘the information shared with me wasn’t clear,’ or ‘I didn’t hear back from someone.’ We publish our data online in an annual report because we want to be accountable and transparent.

The number one area which comes up when I meet with staff is also communication. I may hear that a parent is yelling or swearing or extremely hostile, and staff find it very hard to work together and share information. Partnership means using language and strategies that are respectful and self-respecting.

BLOOM: Do you ever get frustrated by how long it may take us to change something based on feedback?

Kimberley Siu-Chong: Sometimes change takes time. If I’m a cynical person, I don’t belong in this world, which is always about hope. Do I get impatient? Sure.

BLOOM: I guess the word ‘complaint’ isn’t the right word, because it has such a bad rap.

Kimberley Siu-Chong: How you name things does affect how you see them. Every complaint is an opportunity, and that’s not just ‘wordsmithing’ it. It’s an opportunity to partner with families and improve.

BLOOM: Based on your experience with families, what kind of things do our frontline staff need to keep top of mind?

Kimberley Siu-Chong: That every family and every child is an individual. Even though you may have worked with tons of clients with a similar condition, each family is different. Each family has their own values, experiences and journey. We need to view each person as a blank slate and not make presumptions. We need to be willing to listen to what’s important to them by asking open, neutral, exploratory questions.

BLOOM: What do you mean by open questions?

Kimberley Siu-Chong: With closed questions, you’re directing the conversation. So you might say ‘Is it really important for you that your child walks?’ That’s a value-laden, closed question. An open-ended question would be: ‘What’s really important to you?’ Open-ended questions take more time, and are not as efficient.

BLOOM: I guess time constraints make those conversations challenging.

Kimberley Siu-Chong: Yes, I hear that challenge all the time. I know staff have appointments and schedules and workloads, and I don’t want to minimize how challenging it is. But if you don’t take the time to really get to know the client and family, and their values, the care can go down a path that’s not right for the family, and then it has to be undone and you have to backtrack. If you take the time in the first place to really understand where a family is coming from, and establish open communication, in the long term it results in better care and is time-efficient.

BLOOM: Are you ever called to provide support during a disagreement between a family and staff, or is it usually after an incident that you hear about it?

Kimberley Siu-Chong: I can be asked to assist at any stage. But the family has to feel comfortable with including me. I’m a facilitator, so I’m not an advocate for the family or for staff. I picture myself as an advocate for the Patient Declaration of Values. When I hear feedback, I map it against the declaration and identify gaps.

BLOOM: It’s interesting, because I remember when the declaration of patient values was developed many years ago. At the time, people talked about it a lot, but I don’t think I’ve heard it referred to in several years.

Kimberley Siu-Chong: The behaviours we teach in our training for client- and family-centred care in new staff orientation are based on the values in the patient declaration: respect, information sharing, quality of care and partnership.

BLOOM: I guess we tend to refer more to family-centred care now, when we think about those principles.

Kimberley Siu-Chong: Client- and family-centred care at Holland Bloorview is informed by that document. It’s my bible, my analytical framework and the lens through which I see a family story.

BLOOM: What do you love about your job?

Kimberley Siu-Chong: I have an avalanche of thoughts right now. I love the partnerships with frontline staff and managers and clients and families. I love hearing about the rich journeys that families are on. I think I’m uniquely positioned to hear those stories from a 360-degree perspective. This is such a place of hope, I find. When I hear about what our kids and families have been through, it’s a testament to the resiliency of the human spirit, and I get so uplifted. And when I hear about why staff are here, and how their hearts are so much in this work, it’s so moving and soul-stirring.

When I see a complaint translate into change, I get really inspired. Often times, a family or child comes to me because they’re in a place of disappointment, hurt, anger or sadness about some aspect of their experience. 

The thing about pediatric rehab is that our kids and families are with us for a long time, so they’re invested in us improving. Advocating for themselves and others, to make this place better, is a beautiful thing. When it’s appropriate, and the family has an interest, I can channel them into our family leadership program. Quite a few of our family leaders came from our complaints process.

BLOOM: What’s most challenging about your work?

Kimberley Siu-Chong: I hear all of these stories and I’m deeply moved by them. You’re a sponge and you absorb all of these emotions, and it can be challenging in that respect. That takes a lot of energy, and you want to avoid being burned out so that you can be fresh for every single family.

BLOOM: Do you do anything to help you cope with the emotional side?

Kimberley Siu-Chong: I try my best to manage my time. I have drop-ins, and I can’t control that. But if I know there are two emotionally-charged situations I’m dealing with, I try not to put them back to back. I want to be fresh for the next family.

I do try to share my experiences and what I’m feeling with our team. I may say ‘I had a really challenging situation this morning’ and they’re very supportive in listening. I’ll take a deep breath to clear my head, or I may go for a quick Spiral Garden walk to help re-centre. More recently I’ve been exploring mindfulness meditation. You have to take care of yourself to have energy to help others.

Another thing that helps is that I don’t only deal with concerns. We get way more Spotlights than we get complaints, so that balances things. I don’t just talk to people when they’re frustrated.

BLOOM: What strategies work best when you’re meeting with a family that is upset about care?

Kimberley Siu-Chong: My approach is always the same. When they first come in, I apologize for their experience. They’re coming to me because they’re concerned, or scared, or sad, or angry. If you have reason to be in a pediatric hospital, there’s a lot going on in your life, and if you say we’ve done something to add to that stress, that’s very regrettable. Apologizing sets the tone for rebuilding the relationship.

The second thing I do is thank them for coming forward and for trusting me with their story. I thank them for having confidence that even though we’ve disappointed them, we’ll make the effort to make things right. Then I ask them to tell me what happened and I give them space to share their story.

Silence is a very helpful tool. I’m listening to understand where they’re coming from and what’s important to them and what they’ve experienced. They’re helping me to understand so that I can, in turn, help them. I listen and take notes. Once they’ve shared their story, I ask them about their goals or hopes from this process.

BLOOM: If you could change one thing about health care, what would it be?

Kimberley Siu-Chong: We’ve talked a lot about having the time to really get to know each client and family—about what’s important to them, their values, hopes and dreams.

If I had a magic wand, I wish we all had more time to have those important conversations, and that there would be no competing priorities that can create tension. I wish we had more time to build those connections so that we can see each person as an individual.

I’ve met so many young people who have experienced discrimination based on their disability, and who want to channel that anger into change. Sometimes they’ll tell me about a concern here, but then they’ll share about what it’s like in the broader context of their life.

BLOOM: Do you mean how they’ve been devalued in the community?

Kimberley Siu-Chong: Yes. They’ll say this thing happened here, but my whole life I’ve been bullied. Then I get to understand that a particular incident here that seems small—if you understand it in the context of their life—is really huge.

BLOOM: It sounds like something we discovered with our narrative nursing group. It was the idea of the back story—that every family has a unique and painful back story before they even come here, and by being aware of that, it can help us be more compassionate and flexible and non-judgmental.

Kimberley Siu-Chong: Yes, it is the back story. If we don’t understand a family’s context and journey, we just cross paths with each other. But if I have the time to dig behind the anger, often a complaint that is about one thing isn’t really about that at all. It’s about something else that’s motivating the anger.

BLOOM: I think it can be cumulative, too. So maybe a parent has felt devalued or traumatized in their care or in the community before coming here. And these feelings of disempowerment grow, but they don’t express them.

Kimberley Siu-Chong: And then an incident is the straw that broke the camel’s back.

BLOOM: Exactly. But if you’re only looking at the incident in front of you, their reaction doesn’t make sense.

Kimberley Siu-Chong: Often times if I have the time to dig and unpack, I find that a complaint about one thing is really about a number of incidents in their lives that have hurt them to their heart.

BLOOM: What have you learned from the families you work with?

Kimberley Siu-Chong: So many things. I consider myself new to health care, because I don’t have a clinical background. I rely on families to teach me about their health care experiences from their perspective. Because they provide the primary care for their child, families become medical experts, and they explain the medical jargon to me when I don’t understand it. They’re very generous and patient with me.

I think the power of empathy is what I’ve learned. That’s always been important to me, but I get reminded of it, and how it plays out in health care, every day.

Our strengths-based approach made sense to me before I came here. But now I see it in the context of how we talk about disability in common discourse, where people just talk about what you can’t do. I’ve learned to see a world of possibility and hope in action with every client and family.

Do you have concerns or kudos about your care at Holland Bloorview? Call Kim at 416-753-6084 or e-mail feedback@hollandbloorview.ca.

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A child who lived in hospital turns advocate to improve care

This is a photo of Emily Chan last summer, when she participated in the Ward Summer Student Program in our research institute. Tonight she's being recognized by Ontario Premier Kathleen Wynne, MPP for Don Valley West, for her volunteer work here.  

By Louise Kinross

At age six, Emily Chan was the girl with shiny black hair racing through Holland Bloorview to school in an electric wheelchair adorned with pink stickers.

Today, Emily’s a 20-year-old University of Toronto student receiving a 2017 Volunteer Service Award from Ontario Premier Kathleen Wynne.

In recent years, Emily has volunteered to bring a patient voice to research projects at Holland Bloorview, acted as a mentor to other youth with disabilities, and is currently co-chairing our youth advisory council.

“I volunteer here because I want to be able to give back,” Emily says. “I lived here for the first six years of my life. I made incredible physical and mental progress during that time, thanks to the medical teams and physiotherapists and occupational therapists. Without their dedication and commitment, I don’t think I’d be where I am today. I like to be a testimony of ‘Yes, you can do it’ for other youth.”

Emily says serving as co-chair on our youth advisory council is one of her favourite roles. “It comes back full circle,” she says. “To go from being a child who was the recipient of these services to being in the position to inform the hospital on how to make services better and more inclusive is really interesting.”

Emily, who’s in her third year of mental health studies and health policy, says teens with disabilities face a couple of significant barriers to volunteering.

“Speaking from personal experience, I think society in general looks down on people with disabilities as the recipient of volunteer services and help, rather than as the giver of such services,” she says. “That really shuts down a lot of potential. Individuals are afraid to pursue volunteering because of what other people may think, or feel that they don’t belong in that capacity—that they’re not adequate. People with disabilities have a lot more to offer than most people give them credit for. What we do, we just do in different ways.”

Another challenge for youth with disabilities is transportation, Emily says. “The reality is that most of us don’t have a reliable and flexible means of transportation. How are you supposed to volunteer when you can’t even get to the location? Transportation is a huge barrier that’s often glossed over.”

Emily has acted as a mentor to teens at Holland Bloorview and, more recently, to first-year students at the University of Toronto. “I like being able to say ‘Hey, here’s what I’ve been through, and this is what helped me, and this is what I would suggest.’ I like to see my experience impact another person, even if it’s just one person.”

Emily says her volunteer roles at Holland Bloorview have opened her up to a diversity of disability experiences. “I’ve learned that people have amazing stories to tell if you give them the opportunity,” she says. “I didn’t really consider things other than my own struggles before. Hearing what people with different disabilities face puts things in perspective for me. It’s inspiring to see how different people deal with the disability they’ve been handed, and how they harness their disability in a positive manner.”

Emily, who wants to be a psychologist, is receiving her volunteer award tonight. “I’m surprised and encouraged and humbled, and it makes me want to continue to do more.”

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Life or death at 11 years old

Today is National Siblings Day. This is a moving and illuminating piece from Jamie Trossman, 12 (right), about a time a year ago when her brother Jacob, 14 (centre), went into respiratory distress. Jamie's twin sister Sierra is on the left.

By Jamie Trossman

I was sitting at the kitchen table, reviewing my homework, when someone called from the family room.

“Jamie?”

“Yes?”

“Can you come here for a second?”

“Coming.”

I left my semi-finished homework on the table and went to the family room. My 14-year-old brother, Jacob, was lying on a mattress, accompanied by a nurse called Dawn.

“I can’t tell what he’s trying to say,” said Dawn. “Can you help me again?”

I nodded and knelt beside Jacob.

“Jake, is there something you want to say, ask or do?” He blinked once, signaling “yes.”

“Okay, then. Is there something you want to say?”

I gave him five seconds to blink, and he didn't, meaning “no.”

Painstakingly, with these yes and no questions, I deciphered that he wanted to go to the park with me. So we did.

When we returned, I lay down eagerly on my bed to read Harry Potter for the fifth time. Mid-sentence, just as Umbridge was being dragged away by centaurs, I heard Dawn call me.

She was stuck, again, trying to figure out what Jacob was saying. After we realized that he was uncomfortable, and wanted to be turned, I went back to my book.

But before too long I heard “Jamie?” It was Dawn again. I appeared in Jacob’s bedroom.

“Jacob, is there something you want to say, ask or…”

Dawn cut me off.

“Jamie, could you call your mom on my phone, please?”

She handed me a blue cellphone. I dialed my mother’s phone number. Jake let out a muffled shout. Dawn was fumbling with the BiPap machine, a machine that helps my big brother breathe. When my mom picked up, Dawn told me to say that Jacob was in respiratory distress and oxygen and suctioning weren’t making a difference. Now my heart was racing: it sounded serious. My mom told me that she'll be right home and she'll get my sister Sierra to hurry up leaving gymnastics. When I hung up the phone, I noticed that Jacob’s face was becoming redder and redder.

“Jamie, do you see that greenish plug?”

I searched frantically for a plug fitting that description. Once I located it, Dawn instructed me to plug it into the wall and I obeyed. Just then, Jacob let out a cry of pain. I felt his fear and helplessness, like a sharp knife was slashing these emotions deeper and deeper into my flesh, making them stronger and stronger.

“On the BiPap machine,” Dawn told me, her voice beginning to shake, “there is a small black dial. Move it over five squares to the right.” I moved the dial and as I did, my fear blossomed. Why was Dawn’s voice trembling? She shouldn’t be so scared, she’s a nurse, I thought. I’m supposed to be able to count on her to know what to do. She must have done this before. When the nurse panics, everyone panics!

“Now, hold the mask to his face, that’s it.”

I bent over him and whispered encouragingly to Jacob, telling him it would be all right. Yet I could hardly convince myself. I was drowning in fear. It was no use, as he could not hear me over the shrill beeps from his machine telling us the obvious: he was not okay.

A horrible thought entered my mind, one I had never voiced out loud, not even to myself: What if Jacob doesn’t survive? He’s probably already dying, I thought.

I looked up to see my mom standing over me. She turned on a bubble machine that emitted a very peaceful, calm sound of rushing water. We continued to listen to the water, when it wasn’t drowned out by the beeps of the machine.

After about half an hour, my dad rushed in. I kept my sweaty hand clasped over the oxygen mask and tried to calm my brother down. My parents and Dawn tried multiple techniques and oxygen machines. Then my mom spoke.

“We can’t do this on our own. We need help.”

I had no clue what she was talking about. Dawn, Dad and I were helping. What else could we do?

“911?” croaked my dad. My mom nodded, and my wet eyes widened. A voice came from the hallway.

“I don’t want to be here when the paramedics come,” said my sister Sierra. Her eyes were swollen and swimming in tears, just like mine.

My parents looked at each other.

“You could go to Ashley’s house,” my dad said slowly, “They’ll take care of you.”

“I want to go with you,” I said to Sierra. I didn’t want to see what happened.

In my mind, I pictured scary looking people in white coats or uniforms taking my brother out on a stretcher, talking to each other in medical jargon that would sound like nonsense words to me, and pressing intimidating and scary-looking tools onto Jacob.

I didn’t want Jacob to go back to the hospital. It felt like he just got back! Jacob spent pretty much all of last year at SickKids. Jake is not a normal boy: he was diagnosed with Pelizaeus-Merzbacher disease (PMD), a disease which prevents him from walking, talking and eating, not to mention his serious breathing issues.

Sierra pulled a sweatshirt over her gym-suit and we put on our shoes. We called Ashley’s parents to ask if we could come over, and explained what was happening. Then Sierra and I ran down the street to her house and knocked on the door. Soon it creaked open and we entered.

“Ash isn’t here,” said her mom. ”She’s at a basketball game.”

We nodded. She led us into the kitchen and we sat at the table. We sat there for several long moments, as Ashley’s mom put her little brother, Jack, to bed. We sat in an icy silence, hoping that everything was fine at home.

After about five minutes I looked over at Sierra. She was staring at her thumbs as if they were a mildly interesting TV show. Sensing my eyes on her, she focused even harder on her sweaty fingers. When she realized she couldn’t avoid me, she looked up at me.

“So,” I said awkwardly, “So.”

“So,” she repeated. Her voice was hoarse from lack of use. “So so so.”

“How did you find out?” I asked.

She glared at me as if I was the stupidest person alive.

“I came out of gym.”

I rolled my eyes. “Okay…And?”

“I came out laughing and talking to Maya.” Sierra burst into speech, every syllable suggesting annoyance.

“Julia had finally flipped for us on tumble track. So Maya and I were recounting what happened, it was funny and all.” She looked disgusted at this thought. How could something be funny when Jake was at home in trouble? “And she was talking to me,” she continued. “We were getting dressed, then Mum came in, and said you called her and we had to go, so we left. I felt bad because I left Maya mid-sentence. She must be mad!”

Ugh, our brother is … well, sick and all she cares about is that her friend is mad at her? Her friend is mad at her because she had to go help him? People’s minds work so weirdly. Someone needs to prioritize.

Ashley’s mom came down the stairs and joined us.

“How are you doing?” she asked sensitively.

“We’ve been better,” I grumbled. Then, interrupting the silence, there was a knock on the door. We all leaped to our feet and raced there. Ashley’s mom answered. It was my mom, standing in the doorway. Her face was unreadable. My heart stopped.

“What happened?” gasped Sierra.

“He’s okay,” she said.

I let out a sigh of relief.

“Does he have to go to the hospital?” My voice was trembling.

“No.” She smiled.

I felt like I could fly. The weight in my stomach was lifted. I gave a shaky laugh and left with my mother.

I was so glad that I was there to help Dawn with the oxygen. I hate to think of what would have happened if I wasn’t home. Dawn would not have had enough arms to do everything at once.

As we walked home, my house seemed a lot closer to Ashley’s than it had when I was running for my life to get there. As my house came into view, I saw a big, white ambulance and a stretcher in the driveway. The stretcher was empty. The paramedics were petting Felix, my dog, and taking selfies with him. They didn’t seem scary after all.

All is fine. For now.

You can learn more about Jacob and the Trossman family at Cure PMD.

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When getting out is twice as hard

By Sara Pot

I hate surprises. On my 13th birthday, my mom invited five friends over to surprise me. As soon as I saw them, I said, “Seriously?! What am I going to do with you guys?”

Given my aversion to the unexpected, raising two girls who are medically fragile hasn't been easy. Two of our four daughters—Rachel, 10, and Janneke, 8—use wheelchairs and are tube-fed 24 hours a day.

Taking Rachel and Janneke out requires tremendous effort. Sometimes that effort, and the fear of obstacles we'll run into, makes me want to hunker down at home.

Depending on the weather, it can take 20 to 40 minutes just to get Rachel and Janneke to the van. This includes transferring them from their beds to their chairs, securing them, and adding any necessary coats or blankets. The feed pumps are then included and hooked up to the girls, as they are on continuous feeds. 

We wheel them from the bedroom to the front door or porch, depending on the weather. We use the porch lift to bring them down to ground level. From there, we wheel them to the van and begin loading. This includes opening and lowering the van lift, securing one child at a time on the lift, raising them into the van and securing the chairs with tie-downs. 

We're incredibly thankful for the mechanism of the lifts, but we're reminded of Dr. Nefario in Despicable Me when he makes his slow, triumphant exit on his scooter after receiving his 22-fart gun salute. The lifts aren't cognizant of when we are in a hurry!

Last year I read a post on Bill Peace’s Bad Cripple blog encouraging disabled people to use public transit and be visible in the community. Bill talks about how hard he and others fought for accessibility on buses. Yet he’s surprised at how few people with disabilities he sees on his daily bus route.

“If we are not present, ableists will do what ableists are good at—undermining disability rights,” he writes. “I know as winter sets in I am going to be in a battle with the city of Syracuse. I need to get to the bus stop. Snow removal is substandard. Curb cuts will likely be inundated with snow and ice. Bus stops will be blocked by cars and snow piles. I will be out there rain or shine. Where will my fellow cripples be? I hope to see you. I am lonely.”

Getting out in a wheelchair and relying on public transit and strangers for help isn’t easy. My cousin is a university student who uses an electric wheelchair. She’s been interviewed about her Greyhound "trip from hell," when the bus wheelchair lift didn’t work, and the driver didn’t know how to properly secure her chair. Her wheelchair lurched forward, wedging her feet in the seat in front, and she eventually had to be rescued by firefighters.

Because of the generous gift of an accessible van, my girls are not left with public transit as the only possibility to move around. But even with the van, I have to push myself to venture out.

Bill’s challenge to his readers is simple: If we don’t go out and take that risk, others won’t become familiar with our needs and see the importance of advocating for an accessible province.

Last summer, I tried to take Bill’s advice and plan more outings for my girls.

Yes, I was exhausted, but, surprisingly, it was good. Yes, I noted many curious stares, but it was good to start conversations with people I wouldn’t otherwise engage with. Yes, I had to research and find accessible places for two kids in wheelchairs, but the payoff in using our new city “beach carpet” meant my kids wheeled right down to the water’s edge for the first time. 

The biggest hurdle in wanting to travel and visit is the lack of proper change tables. The back bench of the car or van has worked, but I (and my back) certainly appreciate the washrooms with adult change tables and ceiling lifts. We recently purchased a small table to store in the van as another possibility for changing on the go. 

It is imperative I preserve their dignity and privacy; the girls aren't infants that I can simply change on the edge of a bathroom counter. More often than not, I've had to change plans, cut short our day, or reroute our way due to inadequate changing spaces or no spaces. Inclusive accessible bathroom space is critical and essential for everyone. 

I hate hearing about inconsiderate folks that disregard accessible parking spots. But I am determined to give more weight and worth to the few helping hands that unexpectedly show up to open doors and free up parking spaces for us.

It is often the unlikeliest of types who surprise us with their offers to help. Not too long ago, we tried eating out as a family at Swiss Chalet. We parked in a spot that was marked with a wheelchair sign. It looked like it had once been two ordinary parking spots, but was recently changed to one large accessible spot.

We parked the van, thankful for the extra space to bring down the side lift for our wheelchairs. After our meal, I left with the girls, while my husband Ralph paid the bill. I stepped outside only to find that someone had parked their car right next to our van, thinking the space was just enough for another vehicle to squeeze in.

My frustration began to simmer, as I thought about waiting for Ralph to come and help, or returning to the restaurant to find him. In order to release the lift, I’d have to move the van out of the parking spot in an already crowded lot.

Suddenly, I heard a gruff voice. “Do you need some help?” A man got out of his parked pickup. As he stood next to me, another man rolled down the window of his small car. It was parked in a spot that had extra space next to it. “You can have my spot,” he said. I glanced at the sign above. It was marked “For Expectant Mothers.” 

The helpful (pregnant?) stranger pulled out of his spot. Then the gruff man stepped into the now open space and crossed his arms, as if to protect the parking spot until I could back out of my tight spot and drive over.

More than once, I have received help from someone who I wouldn’t think to ask. More than once, I have been on the receiving end of someone’s compassion that first appeared rude, crass, or unpolished.

These are the kind of surprises I love. They cut through my own stereotypes and push me to tolerance and acceptance. The more I venture out with the girls, the more I realize that maybe I can learn to embrace surprises—to work through the frustration of unexpected challenges and see that, with a bit of grace and patience, sometimes things change for the better.

Photo immediately below by Elma Regnerus. It includes all of the Pot girls—Sophia, Emily, Rachel and Janneke. You can follow their adventures at The Pot Family.

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