Jess translates studies into words that families understand

By Louise Kinross

Jess Silver is passionate about health and how we translate research into words the average person can understand. She works as a research assistant in Holland Bloorview’s Prism lab, where one of her roles is to write and edit materials targeted to youth and families. We spoke about how her own experiences growing up with a disability inform her work.

BLOOM: How did you get into this field?

Jess Silver: My passion with medicine and health came out of my own experience growing up with cerebral palsy. I was always looking for other avenues to improve my own situation. I wanted to go to medical school, but I knew that would be challenging because of my physical limitations.

I found out about a medical communications program at the University of Chicago on how to create content that will be easily understood by the general public. I graduated from that program, and now in the work I’m doing, I feel I have a responsibility to help other patients and their families understand clinically what they’re going through. I’ve always been looking for innovative perspectives and solutions that can help me and benefit other people.

BLOOM: What is a typical day like for you?

Jess Silver: I may be editing or writing materials, or scoping out medical databases on a particular topic.

BLOOM: What’s an example?

Jess Silver: Right now I’m working on a project to see whether meditation can benefit a child using a brain-controlled interface to communicate. A lot of the work we do in the Prism lab involves developing technology that allows children who are non-verbal to communicate.

In general, I look at how to edit syntax and grammar and language to make it concise and understandable for the families we’re working with today.

One of my most interesting projects to date was working on an article about Holland Bloorview’s family engagement program in research. I was writing about what the family engagement program does at Holland Bloorview, but also including my own informed perspective as a patient.

BLOOM: Did you come to Holland Bloorview as a child?

Jess Silver: Yes. I went there mainly for physical therapy. I did physio and the Fit and Flex exercise program. I also saw Dr. Wedge for pain, and when I was older I saw Dr. Fehlings.

BLOOM: Did you feel you got the services that you needed?

Jess Silver: Yes. I felt the resources were there. But as a family, we were always looking for more. We believe in Eastern medicine, and we were always looking for alternative approaches to compliment the conventional ones.

BLOOM: Was it challenging for you to move to adult care?

Jess Silver: There were gaps. My parents and I had to do everything on our own, in terms of finding who was going to help me, and what was out there to benefit me. We did receive services through the transition team here, but when I went to university, I found all of the advocacy, and figuring out how everything would work, and how I’d be integrated, fell to me. I felt like I was well prepared, but it I still found it incredibly challenging.

I did my undergrad at Glendon College, and I was the only one in a wheelchair at my campus. I had to explain to everyone that these are my challenges, this is what I need assistance with, and this is how we can work together. Then it was trying to get people to realize that although I have this challenge, it doesn’t mean I’m so different from you. I’m here to get my education.

BLOOM: What is the greatest challenge of your work with the Prism lab?

Jess Silver: The most challenging thing is not having an engineering background, and having to understand the terminology and the workings of devices that are created in the lab. You need to understand protocols for how to develop materials that are digestible for patients, but you also need to understand yourself how this device works and is constructed. Most of the other staff are engineers.

BLOOM: I’ve always had a pet peeve with academic language. I wish we could see lay language in journals.

Jess Silver: It does make things more difficult. What I find so rewarding now is being able to understand that language and, because of my background, knowing how to present it in a way that everyone will understand. When I was a kid and didn’t understand, I'd say ‘Whoa, what did that physician or specialist just say?’ But now I know what they said and it’s rewarding to be able to translate it.

BLOOM: You mentioned that you work remotely?

Jess Silver: Yes. I live in Thornhill and it was difficult for me to commute every day. Also, because of my physical needs, I need assistance from someone for my personal needs. Working remotely allows me to do what I have to do in order to have my quality of life, but still work.

One thing I do find challenging is not being able to be at every meeting or event. But the team is very open to it and accepting. It’s just my responsibility to remind them that I have to be on the meeting with Zoom, or I need to access certain materials.

BLOOM: What’s the greatest joy of your job?

Jess Silver: It’s to know that I went from being a patient, and somebody who lives the experiences that many of our kids do, to working as part of the hospital. I can speak to many of our clients’ challenges through my own experiences, and am able to write in a way that can help a family understand a condition or be able to find the care or resources they need.

I also run my own non-profit for adapted fitness and sports called Flex for Access.

BLOOM: How does that work?

Jess Silver: It creates awareness and raises funds to facilitate adaptive training sessions for individuals who have physical challenges. So we would fund a person’s training, and connect them with a gym or studio that can do it.

BLOOM: I notice you use the word challenge and not disability.

Jess Silver: Yes. I feel that everyone has some kind of challenge, on some level, and mine is just more visible because I use a wheelchair. I never let my disability get in the way of things that I do and pursue. Just this weekend I went indoor skydiving. Through my job at Holland Bloorview, and running my own non-profit, I feel I’m an agent of change.

BLOOM: If you could change one thing about children’s rehab—or research into it—what would it be?

Jess Silver: That’s a good, but difficult, question to answer, because there are many things. I’d encourage people, if they’re given one diagnosis, or one option for rehab, or one way of thinking about a diagnosis, try not to be boxed into that. Okay, yes, this is what it is. But seek other options.

If I could change something in research, it would be to bring a more holistic perspective to the interventions offered as possibly being helpful. For example, the article I mentioned looking at how meditation can or can’t help kids communicate.

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A front pack takes Louise where she wants to go

By Louise Kinross

Louise Sertsis never saw herself as an entrepreneur. But that was before she was diagnosed with multiple sclerosis, and began using a wheelchair.

It bothered her that to carry a purse or bag she had to hang it on the back of her wheelchair, out of sight, and ask her husband—or a friend or stranger—to pass it to her.

“I felt very dependent on others,” says the Whitby, Ont. resident. “It gave me the idea of redesigning a knapsack that attaches to the front of the user, to promote independence and safety and the feeling that I can do this myself.”

For the last couple of years, Louise has developed prototypes of what she calls the Handi Pac, which is two bags in one, separated by magnets. She started a business, called Advanced Freedom. Next month, she's launching a Kickstarter campaign to fund production of the first 300 bags.

One part of the Handi Pac sits on your lap and is attached with a waistband secured behind your back with magnets, Louise says. “You’d put anything you’d normally carry in a purse on a daily basis in it”—like a wallet, keys, tablet, phone and sunglasses. “It’s attached to you, so there’s no concern about the bag falling off when you go over a bump. That’s what used to happen, when I placed my purse on my lap. And because the bag is attached, someone can’t take it from you.”

The second part is worn from your knee to the top of your foot. It carries 15 lbs—the equivalent of a carry-on bag at the airport—and is the largest wheelchair bag on the market, Louise says. It attaches to the users’ calves with a magnetic system. “It’s great if you’re travelling, or going to school or going to the gym.” 

The pack is made of water-resistant, durable cordura nylon. The large bag sits on your feet, so if carrying a heavy load, you may need to take a break.

Louise says she knew nothing about business—she studied science and psychology at school. “I had to learn everything from the ground up. I’m a sole proprietor.”

Online, she made a chance contact with a manufacturer of traditional backpacks that are sold in stores like MEC. “When I told him about my idea, he thought it was amazing,” she says. “I was missing the business side, and he mentored me. He’s made all of my prototypes.” 

The current design is sized for an adult, but Louise says a child-sized version is in the future.

Louise says the first time she tried a prototype she “jumped for joy. I was ecstatic because it worked so well for me that I knew it could help a lot of people. It was so gratifying to see my solution in physical form.”

Louise plans to sell her bags internationally, and finds herself on social media at all times of the day and night, answering questions from prospective customers. 

Check out this video of Louise demonstrating how to use the Handi Pac. You can find more information on her website, or follow her on Facebook.

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Omar says brain injury has turned his shy personality bubbly

By Louise Kinross

Rehan Siddiqui tells the chilling story of how his son and daughter were hit by a car that went through a red light. “She hit both kids going 60 km an hour,” he says. “How could the driver not realize the light was red? There was nothing wrong with the signal.”

Rehan, who sleeps inches away from his son Omar’s hospital bed at Holland Bloorview, says that Omar suffered a severe brain injury and was on life support for 19 days. He spent two months in acute-care, and has been here since January.

Omar, 14, has a slightly different perspective. “It’s a great story to tell my kids,” he says with a smile. “It was like one day I fell asleep, and the next day, I woke up in a wheelchair in this hospital.” The other thing he woke up with, he says, was a new personality.

“Before, I used to be really shy and quiet. I would never crack jokes. I was never brave enough to raise my hand up to answer a question in school. When we did presentations, I wanted to go last.”

Now, “my family says I can never stop talking. I’m always cracking jokes, and I like acting. 'Reporting live,' he says, holding a mock microphone, 'right now, I’m doing an interview with this young lady.'”

When Omar is discharged in two weeks, he says his first order of business is to put together a video for his YouTube channel. “I want to tell the story of my accident and recovery. Bloorview said it might put it on their website for other kids to see.”

Child-life specialist Amarens Matthiesen says Omar has been a great support to other children on the unit.

For example, when Omar encouraged one boy, the patient smiled for the first time. “I said ‘Oh hey, I was just like you. I was sound asleep for a month, and I needed to be in a wheelchair. But look at me now. I can jump. I can run.’ I gave him a lot of motivation.”

Omar used to want to be an architect. “I love to build stuff, and me and my father do handiwork around the house. But I changed my mind since my accident. Now I want to become a YouTuber when I’m older.”

Omar says his best advice for rehab staff is to have fun with patients. “I think most are very good at having a sense of humour, and joking around. Some are really serious, which makes me feel a little uncomfortable.”

Omar says the hardest part of rehab was when his favourite child and youth worker injured herself, and was off work. “She was a beautiful, caring woman who I loved. She would push my wheelchair everywhere, and she would do anything to make me laugh. We had really funny jokes. We were heart to heart.”

Omar is excited about returning to school. “He’s a miracle child,” his father says.

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Hope: 'We cannot take it away from parents'

By Louise Kinross

Imagine coming to the scene of a car accident and being told it’s your child that’s been hit. But your child is not there. She's been taken to the trauma centre, a 30-minute drive away.

Or entering a room and finding your teen unconscious from a self-inflicted injury.

Or hearing a code blue called after taking your child to Emergency with what you thought was the flu. He's suddenly developed a life-threatening illness.

For almost three decades, Holland Bloorview family therapist Caron Gan has heard hundreds of stories from parents whose children suffered a brain injury as a result of unexpected trauma or illness.

“One of the most important things I’ve learned from working with families is the power of supporting hope,” Caron says. “We cannot take it away from parents. Hope is what helps parents keep going for their child. It helps them to catch their breath, so they can be at their best for their child, and be active in their care.”

According to the National Child Traumatic Stress Network, 80 per cent of parents who witness a child’s accident, self-injury or sudden, serious illness experience symptoms of traumatic stress. For about 20 to 30 per cent, these problems will persist in a way that affects everyday life.

“I see a range of responses,” Caron says. “Some parents need to talk openly and candidly about how awful or horrific the experience was. Then I have parents who are not yet ready to talk. It’s way too painful. Avoidance is a common feature of traumatic stress. I know underneath, they’re all experiencing high levels of distress, but coping with it differently.”

Parents often struggle with sleep. They may have trouble falling asleep. They may have nightmares, or wake up in terror, recalling how they found their child, or what doctors told them at the hospital. “They remember every word and detail, and when they describe those earlier experiences, it’s seared into their memory,” Caron says. “Common things I hear from parents are that they were told their child will not walk, or talk, or be able to go to school like they did in the past. Some parents are even asked about organ donation.”

Supporting parent hope is essential, Caron says. “My role is to gauge where the parent is at, and to walk alongside them in that journey. It’s not uncommon for a distraught parent to say ‘I don’t want to hear anything about my child’s brain injury unless I know he or she will have a 100 per cent recovery.’ I've learned that if I don’t hear what that parent is saying about how they want to remain hopeful, and launch into education about what can happen after brain injury, I’ve lost that parent. That parent will have difficulty opening up and trusting me to have further conversations.”

Parents’ readiness to accept their child’s current situation is a process that can’t be rushed. Hope is fluid, Caron says, and changes over time. “Initially, their hope may be that their child will live, and they are so relieved that their child survived. Then it may move to hope that my child will recover fully from their injury or illness. That may morph into hope that my child will make gains in rehab, will walk again or return to school, or adjust to their new normal. It changes from hope for survival, to hope for a full recovery, to hope for the child to live a good life, in spite of their illness or injury.”

Caron embraces the journey. “It’s not something I would try to change by giving a blunt reality check, or telling them what the literature says about outcomes. Families need time to slowly absorb the information, and their hope narrative will change over time.”

Caron says there are variations in how children heal from brain injuries, and offering the range of possibilities helps parents. “They want to know recovery can range from worst-case to best-case scenarios, and that there is no crystal ball. They want honesty from their healthcare providers, but the way it’s delivered can either shut them down, or help them hear what’s said.”

Knowing that most parents in their situation experience depression, anxiety, irritability, guilt and blame helps to normalize their feelings. “When I show parents a handout about what we call pediatric medical traumatic stress, I often hear a sigh of relief. They’ll say ‘You mean I’m normal?’ They need to be given permission to feel what they feel, and to know that it's okay. Acknowledging your feelings doesn't mean you are giving up hope, or will stop fighting for your child.” 

Caron shares tools to help parents calm their symptoms of distress. It may be teaching grounding strategies if they're having flashbacks, to remind them that they aren’t reliving the event. For example, they may learn to name five things they see, hear, feel in their body, and smell, so they know they’re not “back in that nightmare.” They may be taught deep breathing exercises, to visualize a calm place where they feel safe, or to track their emotions in a journal.

Telling their story, in a guided way, is an important part of healing. “I really listen carefully, and with compassion, when families share the details,” Caron says. “They need to reprocess what they’ve been through, otherwise the distress gets locked in the emotional memory of their brain, and can be reactivated when they least expect it.” For example, when they hear a code blue on the unit.

Caron keeps a celebration board in her office where former inpatients have posted graduation pictures. “It helps to cut through some of that despair or fear of hearing the worst-case prognosis. I can talk about how these young people got to know their brain injury, and how it affects them. That these young people had hoped for 100 per cent recovery, but they all had some persisting effects. However, they learned strategies to help them manage those effects, graduate from school and live a good life worth celebrating.”

Acquired disability happens out of the blue, and changes the child the family knew. In this way, it’s different from learning your child has a disability at birth, Caron notes. “These parents had memories and an imagined future with their child that didn’t involve disability. These parents have to mourn the loss of the child as he or she was.”

Brain injury may alter a child’s abilities and personality. “Psychologically or emotionally, the child may feel to the parent like a very different person. Mourning, and letting go of the child that they remember, is really difficult. And outsiders don’t always make it easier.”

That’s because children with brain injury often have an excellent physical recovery, and the lingering effects on thinking, concentration, memory, personality and mood are invisible.

“People will say ‘It’s so great that Johnny’s walking now. He’s in rehab and he’s going to get back to the way he was.’ That creates more distress for families who are grieving inside. They may be told ‘It’s time to move on. Just focus on the positive, and put this behind you.’ But that type of positivity is almost dismissive of the pain they’re going through. Parents may shut down or isolate themselves when their feelings are misunderstood or minimized.”

Sometimes, changes in a child’s abilities, behaviour or emotions may not show up for years, when some people have forgotten that the child even had a brain injury. Often these changes emerge in the teen years, so it's difficult to know if they're due to the brain injury or to adolescence.

Being part of a support community where other parents understand exactly what you’re going through helps. Caron is working with eight parents at Holland Bloorview and the Ontario Brain Injury Association (OBIA)to co-design a four-hour parent workshop that will be launched here in September, and then rolled out across the province. “It’s a place where parents can be comforted, validated and supported, all while learning from one another.”

Traumatic stress in parents tends to be under-identified, Caron says. “There may be a tendency to dismiss the severity of trauma for parents. People may think ‘parents weren’t the ones who went through the traumatic event—it was their child.’ We know that these events have a huge impact on families.”

Clinicians need to remind themselves that they often don’t have the full story of what a parent experienced before arriving here. “If the parent is irritable, or questions staff around what we’re doing, we can’t take it personally. We know from narrative groups with parents that many had to take their child to multiple Emergency rooms before anyone would listen to them. 

“Sometimes, when parents are reactive, or presenting with high stress and anxiety, we need to take the time to hear what their fears are. Learning their back story helps put a different spin on it for us, as clinicians. It’s not about us. It’s about the parent needing to ensure their kid isn’t going to fall through the cracks, like they did before.”

You can register for the OBIA parent education and training program, or, for more information, e-mail Caron at cgan@hollandbloorview.ca.

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Pushing a tube down your nose hurts. Lorry knows firsthand

By Louise Kinross

Lorry Chen has a passion for promoting access to healthy food. “I wanted to solve world hunger,” she recalls of her time in dietetic school at Western University. For 28 years, she’s been a clinical dietitian at Holland Bloorview, initially working at our Bloorview site. She now works with our brain injury and orthopedic and developmental units, as well as in an outpatient nutrition clinic. We spoke about how she chose her career, and an instrumental preceptor at the Hospital for Sick Children who had Lorry put in her own nasogastric feeding (NG) tube, so that she’d understand what it felt like for patients.

BLOOM: How did you get into this field?

Lorry Chen: We emigrated as a family from Hong Kong when I was 12. Our aunt sponsored us. My parents wanted to come to Canada to have a better life for their children. At that time, in Hong Kong we were required to speak Cantonese or Mandarin. I had no English. Before we boarded the plane my aunt told us 'You need two phrases: Excuse me and thank you. That way you’ll be able to get out of your seat to go to the bathroom.'

Throughout school, English was my weakest subject. My guidance counsellors in both elementary and high school said I don’t think you should aim for university. Luckily, I hung around with great people, and all of my friends were aiming for university and said I should try for it. I was the first one of my siblings to go. I initially took science.

That was when I wanted to solve world hunger. I loved nutrition and thought I could go into the lab and make a super plant. That’s all good in theory, but there were two problems. One, I had a black thumb. And two, undergrad experiments often involved animal models, and I have a phobia about rats and mice. At about this time I met my future husband and he said ‘You’re interested in nutrition, why don’t you look into dietitian school?’

BLOOM: How did you move from your training to working with children?

Lorry Chen: After a four-year degree, you have to apply for an internship, or you can’t become a registered dietitian. I did my internship at SickKids and I loved it.

BLOOM: Why?

Lorry Chen: I learned so much. The dietitians there were so dynamic. My first clinical rotation was in cystic fibrosis. I had two lovely patients who made me reindeer and Santa magnets when they were doing crafts. I was at SickKids when they discovered the cystic fibrosis gene. Talk about being in the epicentre of discovery! And that spawned my passion for research.

BLOOM: What did you do after SickKids?

Lorry Chen: The internship was for a year. After that I got married and then I typed and hand-delivered resumés to all of the hospitals in Toronto. I had to take the bus everywhere. I applied to North York General and a friend of mine said Bloorview is just down the street, you can walk there from North York. So I dropped off my resumé and voila—I got an interview and the HR person hired me right after. I’ve been here ever since. 

BLOOM: What is a typical day like?

Lorry Chen: It’s changed so much from 1990 to now. In 1990, I might have one or two patients who were on g-tubes. There were no NG tubes. Now, at any time, I will have five to 10 patients who are on g-tubes or NG tubes. The complexity of our children has increased. Most of my patients have a tube through their nose.

BLOOM: I’ve heard that those nose tubes are extremely painful to put in.

Lorry Chen: When I was doing my cystic fibrosis rotation at SickKids, the dietitian felt we needed to experience what it was like to place one, so that we could have empathy.

BLOOM: That is so smart! Did you put them in for each other, or on yourself?

Lorry Chen: We did it ourselves. It was so hard. I thought I was going to gag and throw up in front of my preceptor and everyone else. That’s why I can relate to an adolescent who needs an NG tube. I’ve put one in myself. Also, before I recommend any kind of feed, I taste it myself and I have my students taste it.

BLOOM: So feeds kids would get by tube?

Lorry Chen: Yes, because sometimes you burp, and then you will taste it. I want to be able to tell them if it’s not the most pleasant taste.

BLOOM: What’s the greatest joy of your job?

Lorry Chen: Taking the NG tubes out! Last week I had two come out. It was the best week ever. The patients and the parents were over the moon. It was a gold-star day.

BLOOM: Besides your work with tube feeding, what other type of work do you do?

Lorry Chen: We’re big on the clinical practice guidelines on bone health. Often I’m asked to make sure if a patient is at risk—especially if they have a spinal-cord injury—that they have appropriate calcium and vitamin D intake. Another part of the job is working with children who are too skinny or too heavy.

BLOOM: I was on a panel at a Food Summit on Monday, and it was for food centre staff who work with people who can’t afford to eat at all, or to eat well. It got me thinking about our families, who are often strapped financially with all of the extra costs of raising a child with a disability. Is that an issue for inpatient families you work with?

Lorry Chen: Oh yes. Patricia Rebia, the clinical assistant in our nutrition clinic, and I have been chatting about applying to the No Boundaries fund to provide tools to families about how to eat nutritiously on a very tight budget.

BLOOM: Perhaps we could also develop a partnership with a food centre locally, or with our foundation. What is the greatest challenge of your work?

Lorry Chen: When you work, and put in your best intentions with a client, but things aren’t going the way you envisioned. For example, if a child has a huge food aversion and he’s not eating.

BLOOM: When my son was an inpatient here, he went on a hunger strike. He was in a body cast and was taking so many meds and was in pain. So he refused to eat.

Lorry Chen: Literally, there are clients that go on hunger strikes. Luckily we can give them an NG tube that provides nutrition, but we want a happy balance with oral intake. Sodexo as a group have been very responsive to some of the food requests we’ve made. Sometimes I’ve brought in some of my kids’ toys from home, if a child responds well to positive reinforcement with toys.

One thing I do communicate with caregivers, when a child won’t eat, is that ‘He’s the captain of the ship. We’re just passengers. We have to let him lead.’ Choosing whether to eat is one of the only things children have control of in hospital.

BLOOM: That’s right. What emotions come with the job?

Lorry Chen: The two extremes. Wonderful joy—when I got to take out two NG tubes last week, I was dancing down the hallway. Stress—when you’re grappling with what can I do to help a child, because the things you’re trying aren’t working. 

BLOOM: How do you manage stress?

Lorry Chen: I’m an exercise fiend. I’m at the gym at 5:30 in the morning. My husband and I go. He kicks me out of bed. We go to a cycle-fit class. Then I take a shower and come to work. On the weekend I do yoga. Exercise, absolutely, is my stress relief.

BLOOM: What kind of qualities does someone need in your role?

Lorry Chen: As dietitians, we tend to be very precise—sometimes too precise. I’ve learned that a little flexibility is a good thing. Sometimes, when there’s an emergency, you have to come up with a solution that may not be ideal, or might have flaws to it, but you do the best you can with a solution, while mitigating all the risks.

BLOOM: You must be good at explaining things.

Lorry Chen: The car is a great analogy for the body. Everyone knows how a car works, so they understand that food is like fuel for your body. When kids say they don’t like breakfast, I tell them to think about how their engine has been idling all night, and when you put your foot on the gas, but the tank is empty, you stall. I tell them breakfast can be different things to different people. It could just be a glass of milk, or a piece of toast.

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

Lorry Chen: Always the resources available to our families. Here I think we’re well supported, but in the community, I often find that there’s not enough. I wish there was a barometer that I could use to assess how much support a family needs, and then be able to give it to them.

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

Lorry Chen: Two words: patience and flexibility.

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Refugee claimant hits roadblocks getting disabled child's care

By Louise Kinross

I'm delighted to introduce the latest in our A Family Like Mine video series.

Meet Ola Atanda and her three kids: Bolu, 15, Abby, 7, and Rahmat Beverly, 19 months, who has cerebral palsy. The family, originally from Nigeria, has been living in a Toronto shelter for almost two years as Ola seeks refugee status. Ola is attending high school with hopes of going on to university to become a social worker.

Ola says her greatest challenge is getting Rahmat’s health needs met. “I’m having great issues with my Ontario Works case worker,” she says. “She never wants to approve any of her medical needs.” For example, she wouldn’t approve Rahmat’s feeding machine. “She’s a sick baby, a disabled child diagnosed with about six things…what do you want to see that could make her…eligible?”

Ola says her two boys get good medical care with their interim health card, which covers refugees without status. “I think the reason why I’m having this problem is because she’s a child with special needs.”

Check out all of our A Family Like Mine videos.

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