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.

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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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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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