A letter to myself

We just finished our first six-week narrative medicine group for parents. The group brought together nine parents for 90 minutes each week to work with BLOOM editor Louise Kinross and Shelley Wall, a biomedical illustrator and assistant professor at the University of Toronto.

Each session we addressed a theme related to the emotions of raising a child with disabilities. Participants would read excerpts from a graphic novel, memoir, poem or interview, then do a writing or drawing prompt, and discuss their work. 

The group was made possible by Holland Bloorview's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit children and families to life.

Below is a parent's response to this writing prompt:

Imagine that you've just received your child's diagnosis. Write a letter to your younger self, knowing what you know now, and share your best advice.

A letter to myself

Don't be alone in this. Make sure you have someone to be your cohort, your side kick, the bad guy, the good guy, whatever it is that you need to balance yourself out.

Find the agencies that say they know the most about the disease, the syndrome, the symptoms and visit them, online, in writing, in person. They have seen it all. Don't wait for anyone to come to you.

Always have a good paper trail and learn to file. File your contacts, every name, number and e-mail and put the paperwork in a file. There will be a day when you need to pick it all up in a hurry and start again.

Remember yourself. Remember your relationship, why you became two, and then three or more. Allow yourself and your partner to grieve differently, to feel differently than each other about the diagnosis and the outcome.

Do the research, try the therapies, but be realistic. Get to know the researchers, the scientists, the people behind the doctors. They want to make it better and need to see the thing they treat, to name it and see it. 

Spend real time with your other children. They will not be okay. You can not be normal, their life with you will not be normal, sharing your grief and tears with them is not always caring, it can be scarring.

When people say respite, take it, do it. Your child will have more people looking after them that sleep longer than you do, work less hours than you do.

If you think therapy is worth it, go do it, find the money, go with your gut, even if it does not fit with your partner's gut. There is nothing worse than getting to a point when you wish you could go back.

And always look after yourself as best as you can. Before you put others first, oxygen mask on you, then the next person.

Try and keep up whatever it was (before kids) that made you delightedly happy, even if you only do it once a year. Try not to do it alone. 

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Falling asleep on a home-care night shift spurs nurse's research

By Louise Kinross

Krista Keilty is a nurse practitioner and visiting scholar at the Bloorview Research Institute who studies parents who care for children who require a “mini-ICU” at home. These children have complex medical problems, use ventilators, and require round-the-clock observation. Krista has cared for these children and families as a nurse at SickKids—where she taught their parents the skills to transfer home—and as a home-care nurse.

In 2015, Krista published a study that found parents of kids who use ventilators at home risk their own health because they struggle to sleep—even when a nurse is in the home. More recently, she’s interviewed parents and home-care nurses to study the factors that contribute to poor parent sleep. She works at SickKids and Holland Bloorview to improve the care and training families of children with ventilators receive as they move from SickKids to Holland Bloorview, and then home.

BLOOM: How did you get into this field?

Krista Keilty: I came to pediatric nursing straight out of undergrad. It was my favourite clinical placement. At the time, I was living in Fredericton and there were very few jobs in New Brunswick. But SickKids was recruiting across the country and set up in a hotel room in Fredericton. In less than an hour, they had me sign a contract and I agreed to move from Fredericton to Toronto, to a hospital and city I had never visited.

BLOOM: Wow. What was your first job there?

Krista Keilty: I was a staff nurse on the Ear, Nose and Throat (ENT) floor, which included a constant-care room for children with chronic complex needs—most of whom had a tracheotomy. I became very interested in being one of the primary nurses training families in preparation for their move home. We didn’t have respiratory therapists then, so nursing had a prominent role.

BLOOM: Given it was your first job out of school, were you nervous to be working with children who required such a high degree of care?

Krista Keilty: I don’t remember being nervous about caring for children with traches. I remember my eyes being wide open in a very large organization, with lots happening and so many opportunities in front of me.

I was warmly embraced by a number of really caring, longstanding ENT nurses who mentored me with a lot of enthusiasm. I learned that trache skill-set early in my career. In the day they called us ‘trache-trained,’ and we travelled around the building as needed.

BLOOM: What is your research focused on now?

Krista Keilty: Understanding the experience of families providing comprehensive medical care for their child at home has been the foundation of my career. Fast forward many years, my research focus is building a program that examines the experiences and outcomes of caregivers when children depend on technology and require constant observation. If a machine were not to function, there would be a negative outcome for the child.

BLOOM: Two years ago we did a story about your study showing parents of children who use ventilators at home are sleep-deprived, and this puts them at risk for physical and mental health problems. Did that study lead to any policy changes that enable families to get more nursing hours?

Krista Keilty: Not a lot has changed, except that everything has changed. With the community care access centres (CCAC) moving to the local health integrated networks (LHIN), there is interest in the LHIN looking at new models of integrated care and funding packages for pediatric home care. At least two LHINs, including Toronto Central, have tested self-directed funding, and the evaluations are pending. A recent Ontario announcement suggests there will be movement towards families having more say about their care, but the details are pending.

Not much has changed in access to home-care nursing. Family voices are being heard better, but change to new ways of doing things is slow. Discharges are delayed while families wait for home care to be available, and once home, the amount of care received is often inadequate.

I think that targeting improvements in [parent] sleep and respite remains a priority. We continue to build evidence to plan an intervention around the sleep disturbance we’ve documented. I’m doing a follow-up study here at Holland Bloorview where we examine the perceptions of family caregivers and home-care nurses about the factors influencing sleep disturbance.

BLOOM: What have you learned?

Krista Keilty: We heard from families about the inability to turn off the switch of worry and vigilance, even when a nurse is in the home to watch the child. Whether we call that insomnia or constant vigilance, that’s one area of work that may lend itself to behaviourally-based interventions.

Another major finding was the use of personal technology to help parents monitor their child or monitor the nurse. Families describe nurses falling asleep often.

Parents may have a baby monitor visible at their bedside with the volume turned on. Or they may ask nurses to text updates on their child throughout the night, from the child’s bedroom to their bedroom.

We know the influence of technology on sleep is a public health concern in the general population, and it’s likely a large source of interference with caregiver sleep.

BLOOM: But if a parent is afraid the nurse may fall asleep, it sounds like there are good reasons to use a monitor.

Krista Keilty: Consistency, continuity and competency in the nurses is important. Nursing agencies have a real challenge filling these shifts.

Right now, the duration of shifts is not well aligned with sleep needs. If you only have six-hour nursing shifts but you need eight hours of sleep, you’re already clipping your sleep to provide the hand over to the nurse.

Another study we’ve submitted for publication examined the use of unregulated caregivers for a longer shift—so hiring nannies, university students and others who are not classically trained for the work.

We studied 20 families who identified and trained a provider around competency and the family’s values about how they would like the care provided. They used some public and some private dollars to pay them. We wanted to know if having an unregulated caregiver who worked a longer duration of shift was an acceptable way of supporting the families.

BLOOM: How did that work out?

Krista Keilty: The families didn’t communicate any safety concerns with unregulated caregiver use. They did speak about a large burden on them to identify, hire and train these caregivers. They didn’t always feel confident that they knew how to do that, and there was no formal support system to help them.

But they also told us they appreciated having them as part of their care team. They often fit in well with the families and, once trained, offered competent and compassionate care.

BLOOM: Can you talk about what it’s like to be a home-care nurse on a night shift?

Krista Keilty: We’ve asked nurses that question in our recent study. They tell us that the nature of the work is very difficult. It can be isolating and lonely. It’s not like working in a busy hospital at night, where you have colleagues who can help you stay awake.

Not only are home-care nurses working in isolation, but one of the instructions from many families is to work in the dark, so they don’t wake the child or the family. But being in the dark is the most major cue for sleep. In a focus group, I asked how many home-care nurses had fallen asleep on the job, and there was a lot of nodding in the room.

BLOOM: Can you tell us about your own experience falling asleep on a shift?

Krista Keilty: Early in my career, when I was working as an ENT nurse at SickKids, I was also employed by a home-care nursing agency. A number of us at SickKids and Holland Bloorview were moonlighting. We did this to support the families as they started to leave the hospitals with medical technology.

One day, I got a call late in the afternoon to do a home-care shift that evening. It wasn’t uncommon to get last-minute calls. That day I hadn’t worked at SickKids, but it was my day off, and I’d been at the beach. I was sunburned and tired and in no frame of mind to be staying up all night. I declined the shift—many, many times.

They kept calling back, and I felt a lot of pressure. Finally, the actual owner of the agency called me, and she wasn’t taking no for an answer. The shift was in Oakville and I’d never travelled outside of Toronto, since I was from New Brunswick. The owner told me to get on the GO train and she’d pick me up in Oakville and drive me to the house at 11 p.m. I’d be working with a family I’d never met, with a child whose care I wasn’t familiar with, in the dark.

The child was on the main floor of a large suburban home. I met the family at the door and they briefly went over the child’s care plan and showed me the equipment. The boy was asleep, non-verbal, and on a ventilator. The parents went off to bed and I did my initial assessment of the child and provided care for a number of hours.

Sometime between the hours of 2 and 4 a.m., which tends to be the witching hour for safety incidents related to sleeping on the job, because it’s the hardest time to stay awake physiologically, I fell asleep. The father woke me up when he heard the kangaroo pump beeping, from a distance, in this large home.

I was forever changed. I realized I’d let him down and put the child at risk by not being available to the child when clearly this was an alarm to be alert to. I failed to hear it. I tried hard to have a conversation with the family the next morning about it, but they dismissed me, and I’m sure they never wanted to see me again.

BLOOM: How did this experience change you?

Krista Keilty: I had to reflect on how the provider-family relationship was structured in such a way that I was postured to be the expert, when clearly, just the fact that I had the title ‘registered nurse,’ didn’t mean I was good enough that night. I was trained on the technical side for this child’s care, but I didn’t know the family and I didn’t have a rapport with them.

I was a caring, hard-working, professional nurse, so I knew I was probably one among many who had let the family down and posed a safety risk. And, importantly—I knew I had threatened that family’s ability to get respite in the future, even when a nurse was in the home.

BLOOM: Because they would be afraid it would happen again.

Krista Keilty: Yes. This was a pivotal story in my career that spurred the idea for my PhD study.

BLOOM: What do parents say is the greatest challenge caring for their child at home?

Krista Keilty: They continue to tell us that it’s the complexity of the health system—that navigating that system takes a lot of their time and energy. In another study, I looked at the ways families spend their time. The ‘case-management’ they did for their child was a large time consumer, and it was also the most stressful part of what they did.

That’s partly why I’m excited to be here in this role. I’m working on a quality improvement project to support the families’ transition from SickKids to Holland Bloorview and then home. I’m trying to smooth those processes, and we have families engaged to tell us what it needs to look like.

BLOOM: In addition to sleep deprivation, I saw a paper you wrote that talked about how having a child with complex needs at home affects the family financially.

Krista Keilty: Yes. We’ve documented that income levels of family caregivers are less than those of a community-based sample with healthy children. Family caregivers of children with medical complexity are under-employed at a time when many would be in their highest, income-earning years.

The burden, for families, has been documented, in terms of negative impact on income, depression and anxiety, and in work by Dr. Eyal Cohen at SickKids and others, even shorter lifespans in mothers due to premature death. These data spur me, and others, on.

BLOOM: What emotions do you experience working with these families?

Krista Keilty: The gamut. I've learned that I'm highly empathic to the emotions of those in my environment. Given families can be sad and angry at times, then I find I can feel this way, too. Providers can be angry, or at least highly frustrated. But instead of feeling downcast, I most often feel happy and excited for what is possible. Families frequently experience uplifts and share their joys and hopes, which I find contagious.

They are very very thankful when their care is compassionate and supportive. Clinical and research colleagues are also energizing. I'm a big believer in the power of sleep. I need a lot of it. And it helps me get up every day with the will and ability to take on new challenges and cope with whatever comes my way. And, of course, a walk in Spiral Garden is always good for the soul.

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Worried you're not a 'good enough' parent? Barb can help

By Louise Kinross

Barb Fishbein has always been one of my favourite people at Holland Bloorview. She’s a social worker who works in our child development program and has been at the hospital for 31 years.

BLOOM: Why did you go into social work in children’s rehab?

Barb Fishbein: I adore children and I was running a summer program down at Harbourfront when I was a student and I remember some children coming from Holland Bloorview and being so intrigued and thinking ‘that’s a place I’d really like to work someday.’

BLOOM: What children and parents do you work with here?

Barb Fishbein: I work with children in the child development program and their families. That includes children with cerebral palsy, genetic and metabolic conditions and complex medical needs.

BLOOM: What are common issues that parents come to talk with you about?

Barb Fishbein: Worrying about the future is a huge one—that’s almost across the board: 99.9 per cent of families worry about the future. A lot worry about society’s reactions to their children, what other people will think and how their children will be treated in the community.

Another theme would be feeling the need to do everything possible for their child and searching for therapies and alternative therapies. Sometimes that means travelling in Canada or internationally to get medical care and therapies.

Another theme would be parents feeling exhausted. They want to be the best parents they can be, but often do everything themselves for a long period of time and have difficulty asking for help.

BLOOM: What kind of counselling or support do you provide?

Barb Fishbein: It’s very individual and based on my assessment of the family’s needs. I have a background in psychodynamic therapy and family therapy and am currently taking a grief and bereavement course. My approach is to be supportive and non-judgmental. I look at the family as a system and try to understand the client’s background, beliefs and values and their vision for their child.

I always ask parents to think about whether there is a good balance in their family. It doesn’t have to be a perfect balance all the time—that wouldn’t be realistic—but it can be something to strive for. I have a strong belief that in order for a child to be well, in a holistic way, emotionally and physically, the parent needs to be healthy. So I focus on the parents’ self-care and explore their stresses.

I’m also certified in Triple P parenting so I do a lot of work around behaviour. I have a strong philosophical stance in regards to positive parenting and really looking at children’s strengths and building their self-confidence no matter what their disability is.

Depending on the needs, I can see parents for a four-to-eight session block, and then I may see them at other times over the child’s life. There’s also a practical element to the work I do: as social workers we provide information on government benefits, assist with applications for financial assistance and funding of respite care and make referrals to other community services. We work collaboratively with the interdisciplinary team to make sure families have appropriate equipment and are included in community activities and programs.

BLOOM: What are changes you see in parents as a result of counselling?

Barb Fishbein: I see a confidence in their parenting skills. They may start from a point of striving to be the perfect parent and get to a place of accepting themselves and embracing their strengths. Parents often tell me their children take them to places they’ve never been before.

Some families make significant changes in themselves and their view of the world. I’ve had several families say they previously had a vision of being more financially successful or having a bigger house or more material things, but they’ve found a true richness in their life in their relationships and intimacy with their children. One dad told me yesterday that his son had given him the ‘gift of dependency.’ This is a father who had lost his child.

BLOOM: Why does our culture have such a problem with dependency?

Barb Fishbein: It’s a belief system most parents come in with and it causes a great deal of anxiety. They have dreams for their child’s future based on societal norms about their child going to university, getting a job and moving out.

For some parents, realizing their child may be dependent for a longer period of time helps them to slow down, to stop and reflect on what’s important. They’re able to see the beauty in their children, the gifts they give and the joy in being able to care for another human being in such an intimate way.

Sometimes parents feel a lot of worry about whether they’re going to be a good-enough parent to their child. They feel they can’t possibly do this and they may come to social workers feeling depressed. We work on helping them to recognize the skills they’re developing: navigating the hospital system, learning nursing or therapy interventions they might have to do at home and becoming an advocate.

BLOOM: What is most challenging about your job?

Barb Fishbein: Not having enough time in the day to do what I’d like to do.

BLOOM: We know parents of kids with disabilities are at greater risk for mental health problems. What can parents do to build their resilience?

Barb Fishbein: I absolutely believe in resilience. Building resilience is really important and I tell parents early on that they have to be strong over the long run if they want to be good parents. So they have to take care of themselves.

I talk about an emotional bank account and the need to make deposits on a regular basis. We put money in our bank account, but we need to make deposits in our emotional account. That includes physical health and wellbeing.

A lot of parents, in the beginning, can’t imagine how they can carve out any time for themselves. Some parents can barely take a shower because their child needs constant care and supervision. We need to help them get to the point where they can take that risk to believe that taking care of themselves is not a selfish act. Often parents feel they’re being selfish.

BLOOM: What are ways parents can take care of themselves?

Barb Fishbein: You start small, like taking a short walk to get out of the house, or meeting a friend for coffee, or going to the gym. Eating well is important and so is getting enough rest.

BLOOM: But isn’t that challenging because a lot of our kids have sleep problems?

Barb Fishbein: Yes, sleep disorders are a huge challenge. It could be the child has a seizure disorder, or pain, or the child may get their days and nights mixed up neurologically.

I encourage parents to speak to their developmental pediatrician, clinic nurse or nurse practitioner, neurologist and other specialists and to keep asking what else that can be done to help their child get a good night’s sleep.

Asking for help, and getting respite care, is also important. So we look at their circle of support and which family or friends may be able to come in. Beyond that we encourage families to access in-home and out-of-home respite. That’s one of the hardest things for families to consider, especially when their children are young. I really feel for parents, but at the same time I encourage them to take small steps.

It could be taking their child to a respite place like Safe Haven for the day. They can spend a few hours with their child and then go and have a coffee and come back until they’re comfortable leaving the child for a longer period of time.

BLOOM: Do you recommend other supports for families?

Barb Fishbein: Some of our social workers are doing mindfulness meditation with our parents. Some parents may be dealing with issues separate from their child that they need further counselling about outside of Holland Bloorview.

Our families come in all forms: married, single, divorced, gay, lesbian, transgender. They may speak another language or have different socioeconomic backgrounds. I encourage parents to attend our Parent Talk groups that cover different topics and introduce them to other parents. There are also a number of groups for parents of children with disabilities in the community.

BLOOM: Have your thoughts about families of children with disabilities evolved over the years?
  
Barb Fishbein: I always believed in the resilience of people, but sometimes I felt that some parents might lose their way and not be able to get to a place of happiness or balance. I now have a really strong belief that the majority of people, with the right support and a willingness to open their hearts and minds and let go of old ways of thinking and self-judgment, can find a deeper happiness than they ever imagined.

Parents need to be able to take advantage of services and supports and groups that are out there, and we also have a responsibility to continually evaluate our services. As service providers, we need to become more flexible with our hours so that families can more easily get transportation and fit appointments into their other commitments and work schedules.

BLOOM: How have we changed as an organization over the three decades you’ve been here?

Barb Fishbein: Family-centred care has come a long way: family involvement in the organization at every level and really listening to families and respecting them. We’ve talked about it for many years, but now we’re really making it happen across the organization and within teams and in every way we communicate with parents. We’re also doing more research into areas that families and children say are important.

BLOOM: If you could make a change in the health or social supports offered to families of children with disabilities, what would it be?

Barb Fishbein: I think we need to make services flexible to meet family needs and give families more control and autonomy in creating supports that meet their individual lifestyles. So making services portable—having nursing care that goes into nursery schools. Making inclusion possible for all children, whether they want to go to the park or to a movie, or to a Holland Bloorview swim program or shopping.

BLOOM: Many years ago you were off work being treated for cancer. How did that experience inform your work?

Barb Fishbein: It helped me to understand in a much more personal way that random things can happen. So I truly understand that feeling of suddenly becoming ill or experiencing trauma and that life is like that. I really appreciated the care I received. I had incredible care from the point of people at hospital reception to nursing and medical staff and was treated with so much compassion and respect. I truly believe in patient- and family-centred care and when I was sick I saw it in action.

I really value life and I think I tend to act on things with more confidence now when I feel they’re right. I don’t hesitate to do things that I know are in the best interests of families. And despite the fact that something happened to me that was out of my control, I found a way to move forward in a positive way and appreciate my life in a deeper way. I’ve always loved the work I do, but I love it even more now.

BLOOM: What advice would you give parents?

Barb Fishbein: We’re having a lot of conversations with parents about the importance of play and leading a normal life. I think parents need to be cognizant of over-programming, over-medicalizing and over-therapizing.

They need to look at the amount of time their child is spending in therapy. If your child was a typical child, would you want them spending that much time in a rehab centre or hospital?

Can you let go of some of that pressure on your child and yourself and be able to be with your child and appreciate them for who they are?

I also strongly belief in the emotional life of a child and when we focus so much on physical rehab, which of course is important, we may forget to pay attention to the child’s emotional wellbeing—including how to nurture a feeling of acceptance and belonging.

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This educator's ties to Bloorview span three generations

By Louise Kinross

Debbie Sutherland’s connection with Holland Bloorview goes back three generations. Her grandmother Beatrice worked as a cook at the original Home for Incurable Children. Her mother June developed polio as a toddler and had her braces made at the Hugh MacMillan Rehab Centre. Debbie has worked as an educational assistant in the Bloorview school for 11 years. BLOOM talked to Debbie about her work here, her family’s connection to the hospital and a community respite program she’s developed with Bloorview School teacher Shelley Neal.

BLOOM: What’s a typical work day for you?

Debbie Sutherland: It starts with getting kids off the busses. It’s a good way to greet them and say good morning and ask how their night or weekend was. Then we do mobility. So we get the kids on bikes or in their walkers and they go all over the school and centre. On Tuesdays I do bussing and 80 minutes of mobility, so I’m walking for 120 minutes. I gave up my gym membership!

BLOOM: Are you in one class?

Debbie Sutherland: I’m in the library this year. In the past, I’ve worked in integrated education and therapy classes, the autism class, the integrated kindergarten and the class for children with complex needs. In the library I now work with all of the kids from junior kindergarten to Grade 12.

BLOOM: What are some of the things you do in the library?

Debbie Sutherland: I check the books in and out and assist the librarian with the classes. We have eight classes of little kids once a week and the older kids come twice a week. With the younger students we work in groups with a white board. So we may download a book onto the board and read a story and get the kids to interact with it by touching the board or hitting a switch. With the older students we’re teaching them how to do research and use Google and the Internet safely. They may be choosing books for projects.

BLOOM: Had you heard about Holland Bloorview through your grandmother’s work here?

Debbie Sutherland: When I was really little my grandmother said she worked at the hospital with the kids who are crippled, like my mom. That’s the term they used then. My mom had polio at 28 months and is now the oldest surviving polio victim in Canada. My grandmother was one of the original marching mothers of the March of Dimes. They used to put something sticky down on the street and people would come and stick dimes on it. She worked at Bloorview for at least 20 years. She was an amazing cook and the people there loved her. She said the kids were like my mom—they couldn’t get around very well or their parents had left them so they had to live there.

BLOOM: How was your mom affected by polio?

Debbie Sutherland: Her right leg is paralyzed and her left arm. She’s now in a wheelchair, but until I was 14 she walked. She had a really bad limp. I remember being teased at school about how my mother walked and how embarrassing it was. My mother told me that when she first started school the other kids would push her down to watch her struggle to get up. She had iron braces on her arm and leg. In the cold, her braces used to snap. One of the doctors told my grandmother that she should go to a special school, so she went to the Wellesley school, which later became Sunnyview.

BLOOM: Did your mom talk to you about disability?

Debbie Sutherland: She talked about having polio. We lived in a side split that wasn’t accessible so she had to go up and down the stairs every day. I remember the first time someone said ‘Your mom is disabled’ it was a shock. I said ‘What do you mean?’ It was always just a part of our life. My mom is the second oldest of seven and when she was young she wanted to ride a bike. The doctor said ‘You can’t.’ So she told her stepfather and he took the brace off her leg and put it in the cement foundation of our house. Then my mom learned to ride a bike and she got around everywhere on this bike.

BLOOM: Did she have a lot of medical interventions?

Debbie Sutherland: They did a lot of experimental surgery on her back. They’d say ‘Wow, that kid is really tough. She made it through and she’s the first one.’ She had humungous scars down her spine and across her knee.

The doctors loved to use her as a teaching tool because they almost never saw polio victims. So it was never just one doctor, but a doctor and a whole bunch of interns watching her. I remember sitting in the waiting room when my mom got her first wheelchair. The doctor told the group that my mother could never have children because her muscles couldn’t hold a pregnancy. She said: ‘You might have wanted to tell me that because the youngest of my five is in the waiting room.’ The doctors were always amazed that she had survived because most kids with polio back then didn’t.

BLOOM: How did you first work in our school?

Debbie Sutherland: I came on a placement to Bloorview at the Leslie site. And when I walked into the school I thought ‘Oh my gosh, this is where I need to be.’

BLOOM: What was your first position?
Debbie Sutherland: I was an EA in a junior kindergarten IET class, so it was the kids’ first experience at school. I loved the kids.

BLOOM: What was most challenging?

Debbie Sutherland: The crying. JK kids cry a lot and for a long time. I think that’s particularly true for kids with disabilities who’ve been sheltered or they’ve been with their parents from day one and never separated. It made me recognize that these parents really needed a break.

Three years ago Shelley Neal and I started a respite program that runs out of our church. It’s four hours of free respite once a month and we take babies to age 13. It’s called rEcess.

BLOOM: How does it work?

Debbie Sutherland: It’s volunteer-driven. We have doctors and nurses and therapists and EAs and teachers and our church youth are involved. We have 67 volunteers currently, and 44 kids registered, with 15 families on a waiting list. It runs on Saturday night. We feed the volunteers and talk about what’s going to happen that night, who the kids are, and they read about the kid they’ll work with. Parents show up at 5:30. We take all of their kids, including the siblings, so the parents get true respite.

The idea is that the parents go out on a date. We want to know where they’re going and make them accountable. The parents are starting to form little groups who go out for dinner together and talk. They’re forming their own community.

BLOOM: Where is the respite held?

Debbie Sutherland: Kingsway Baptist Church in Etobicoke.

BLOOM: What do the kids do?

Debbie Sutherland: We run a full program with stations. There’s a big-muscle adventure, we have a GeoTrax train set that covers the entire floor and is remote controlled. We run an art therapy program, puzzles, games, sensory activities. We change all the kids, put them in PJs to watch a movie so they’re tired and ready for bed by the time their parents come at 9:30. We have all kinds of adapted seating.

BLOOM: What are your hopes for the program in the future?

Debbie Sutherland: We have a big vision. We want to build a complete, full-service respite centre, so that instead of running respite once a month, we can do it every week. The parents will never, ever be charged.

I’m going to school one night a week at the York Entrepreneurial Development Institute to learn how to register our program as a non-profit and make it sustainable. The professors love our program. rEcess has been chosen to be the group project every week and our business model is just about done. We own the property beside the church and we’d like to take down an old, inaccessible house there and build a four-storey building that would house our complete respite centre, including an overnight component.

The professors at York suggested we should rent the second floor out to occupational therapists, physios and doctors at below market rent in exchange for them providing some free services for kids who can’t afford it. Their rent would make the program sustainable.

BLOOM: How do you manage to juggle your work here and your family and the respite program and school?

Debbie Sutherland: Sleep is highly overrated! I work at Bloorview, I tutor once a week and do respite twice a week and I do rEcess. I surround myself with amazing people, like Shelley Neal and Peter Rumney. Peter volunteers almost every time recess runs. He's our medical contact.

BLOOM: What do you get out of your work with kids here and in the respite program?

Debbie Sutherland: This is my niche in life, this is where I love to be. I adore the kids. They wouldn’t have to pay me to do this job. In my work with rEcess I get to see the light come out in other people. I get to empower people to be leaders and to understand awareness and inclusion.

BLOOM: I understand you’re trying to expand the respite program?

Debbie Sutherland: We’re looking for another 40 volunteers to run a second night. We could use nurses and doctors and anyone who wants to volunteer—even if it’s just once a year. We’re also looking or people to sit on our board.

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