Sharing work 'wounds' helps nurses prioritize their own self-care

By Louise Kinross

A six week narrative group for inpatient nurses at Holland Bloorview increased nurses' empathy for their own emotional reactions to working with children after painful bone surgeries or life changing trauma, and their families, according to a study published in The Journal of Pediatric Nursing last month.

BLOOM reported earlier on how the narrative training increased empathy for patients and families and for the nursing team.

This piece looks at how the six, 90-minute sessions of writing, drawing and talking about their own nursing stories elicited greater self-compassion in nurses. Participants were able to share work-related emotional wounds they had sometimes carried for decades.

Knowing they were not alone in experiencing emotions like grief and regret allowed them to let go of what they called medicine's "myth of perfection," and to recognize that to provide the best care, they must first care for their emotional and physical wellbeing.

Each session began with reading of a patient story, poem or comic that addressed common themes in children's rehab such as 'Seeing from different points of view; 'Obstacles to empathy,' and 'Making room for hope.'

Facilitators led a discussion of the reading, then gave participants a related writing or drawing prompt. For example, 'In a three-panel comic, tell the story of a patient through their parents' eyes.' Participants then discussed and shared their work.

In the study, empathy is defined as "The capacity to imagine the situation of each patient and their family—understanding their feelings and perspective, and responding in ways that make patients feel heard and cared for."

Participants worked with children hospitalized at Holland Bloorview following painful bone surgeries or life-changing trauma, such as traumatic brain injury, or with complex medical problems. Each nurse did an in-depth interview before and after the group.

Prior to the intervention, nurses said little about self-empathy, and instead spoke about efforts to control or hide emotions like grief, regret or guilt. "I'm still learning and trying to control my emotions," said one. "If I can just not...freak out right away." They also expressed an intense desire to avoid failure. "I need to learn to...try not to take it personally, but you do. Because you feel like it's your fault, even though it's not."

Their efforts to cope with stress were often reactive, and didn't involve seeking out nursing peers. For example, "I would go myself and cry in one of the rooms."

In addition, they regularly described struggling to absorb difficult or abusive behaviours in patients, parents, and co-workers. "You want to be able to stand up for yourself, but it's hard to figure out that line with family-centred care," said one. "Professionally too, right?"

After the narrative group, many nurses said it was the first time in their career they'd been able to talk about emotional wounds from traumatic work incidents. "It happened like 17 years ago," said one. "You don't realize sometimes that you haven't totally resolved something." And: "[The intervention was] like therapy on a whole different kind of level."

Hearing that all nurses make mistakes and experience challenging emotions led them to let go of the pretense of perfection, and to be more comfortable with ambiguity. "Not being so scared to tell them I don't know... because we don't have all the answers," is how one described the change.

After the group, nurses stressed the need to proactively take care of themselves. "It means not overworking your body, like not working more hours than you're physically capable of, making sure you take your breaks at work, making sure you've made time to do fun things outside of work."

They were less likely to fixate on mistakes, acknowledging the need for humility and self-compassion. "Not being so upset with myself when things don't go right," said one. "[The intervention] confirmed that it's okay if I don't know, because not everyone knows everything either," said another. "I can see how that shift happened throughout the weeks."

After the group, participants were more likely to reflect creatively on mistakes and figure out how to do something differently the next time, and to approach, rather than avoid, emotionally charged family situations. 

One theme that only surfaced after the group was pride in nursing. "The once-a-week [intervention] really brings you back to the purpose of my role..." said one. Sharing stories that revealed the profound influence nurses have on patients and families boosted their confidence. "I felt good about myself being a nurse being part of the group...because it gives me in-depth thinking of... how much we are doing right, like in terms of client care."

Many were reminded of why they became nurses in the first place. "I'm impacting people's lives," said one. "I think we forget how much we do here. Just talking about it, listening to the other staff's experiences here and elsewhere, it makes you realize how important your role is." 

This study was funded by a Catalyst Grant from the Bloorview Research Institute. The lead investigator was Keith Adamson, then collaborative practice director at Holland Bloorview. Also on the team was Sonia Sengsavang, a PhD candidate in developmental psychology from Laurier University and Michelle Balkaran, a nurse who is now an interim operations manager at Holland Bloorview. The three facilitators were Andrea Charise and Shelley Wall, both professors at the University of Toronto, and BLOOM editor Louise Kinross, who is also the parent of a son who has been an inpatient at Holland Bloorview. 

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When Bay Luu isn't caring for her grandson, she's exercising

By Louise Kinross

On Friday I looked out my window at Holland Bloorview and saw Bay Luu, 73, pushing her grandson Nicholas, 17, in a wheelchair. A little later I glanced out and Bay was on her own, doing an aerobic step routine on the basketball court—minus the step. After that she did yoga poses and stretches, including sitting on the tarmac with her legs stretched out like a ballerina, and her head, chest and arms touching the ground. Bay has been sleeping here at Holland Bloorview with her grandson Nicholas, who has a brain anomaly called pachygyria, and is recovering from orthopedic surgery. I wanted to find out how Bay incorporates exercise into her days at the hospital, and how it helps her care for her grandson.

While talking to her, I learned Bay and her family spent a perilous 11 days in a fishing boat sailing from Saigon to Malaysia in 1976, after being stripped of their house, store and belongings during the 1975 Communist take-over of South Vietnam. Prior to their escape, Bay's husband Thanh was sent to a remote labour camp while she and her children lived for months with other families in a church and school. "If the Communists had caught us I would have pushed the children into the sea, then jumped myself," Bay told The Ottawa Citizen in a story about her family in 1978 (see photo at the bottom). The year before they arrived in Ottawa as refugees.

BLOOM: Tell us a bit about Nicholas?

Bay Luu: He doesn’t talk, but he walks a little. He understands everything. He will shake or nod his head if you ask him a question, or use sign language or facial expressions. At home he goes to school. I live with my daughter Hanh’s family, so that his parents can go to work during the day. Nicholas loves Thomas the Train. His dad has bought him the whole set. He likes to go to the computer and search for information on each of the characters. When he was diagnosed, the doctor said he was one in a million.

BLOOM: How long have you been living with Nicholas’s family?

Bay Luu: It will be 18 years in January. After we found out Nicholas would have special needs, we sold our house in Ottawa and I came here to help. My husband stayed near Perth, because he doesn’t like the city.

BLOOM: What is your routine at home?

Bay Luu: In the morning I wake Nicholas up at 6 o’clock and help him go to the washroom and brush his teeth and we go down for breakfast. I pack him a lunch. He likes little bits of French toast he can eat by himself, and two yogurt bottles. In the morning I make him oatmeal. At 7:30 the bus comes to pick him up. Then I go for a walk. I come back at around 12 or 1 and cook something. I cook his dinner for a long time so it’s chunky, but very soft. I chop the carrots and the chicken small, and cook them with rice and chicken broth. He comes home at 3:15. At 3:30 he does half an hour of exercise on the elliptical in our basement. That’s when I do my stretches. Then he has oatmeal and a bath and his dinner. We stretch his legs in braces for about an hour-and-a-half in the evening. He goes to sleep at 8:30 when he’s at school. He sleeps with me. 

BLOOM: Does he sleep through the night?

Bay Luu: Yes, he sleeps well.

BLOOM: I know children with his condition sometimes have seizures.

Bay Luu: We are very lucky and he’s had no seizures.

BLOOM: What is your exercise routine at Holland Bloorview?

Bay Luu: I get Nicholas ready in the morning and he goes to recreation at about 9:30. Then I go out to exercise. First I go upstairs to the 6th floor and I walk down to Level zero and up to 6 again, and then I go outside. I do step, stretches and yoga on the basketball court. I have about an hour and a half to exercise, so after that I may go for a walk in the ravine or walk to Metro. At 11:30 I get Nicholas and help him with his lunch. Then he relaxes on his bed with the TV or iPad. In the evening I do the stairs again. I walk up to the 6th floor, then down to level zero, and back to the third floor.

BLOOM: Why is your exercise important?

Bay Luu: I have to move, I can’t sit. I feel better and my knees are better. I used to take painkillers for arthritis, but when I exercise I don’t need to. I’m happier when I exercise. If I don’t walk for two days I feel sad. At home I walk five days a week. I also eat lots of vegetables and fruit and drink two litres of water every day. It helps me stay well and healthy, so I don’t have to take pills or be in the hospital. At my medical checkup this year I didn’t have any problems.

BLOOM: Did you have experience with disability before your grandson was born?

Bay Luu: No, no experience. No one taught me how to take care of Nicholas—by living with him you figure it out. I felt very sad, but if God gives this to you, we have to accept it. It doesn’t help to be sad or angry. I love Nicholas lots and that makes me happy.

BLOOM: How has this experience changed you?

Bay Luu: Before Nicholas was born I was busy at work. I worked for 23 years at a fast-food submarine place. Now my children are grown up and they’re okay, so I’m happy and thank God. I try to help the kids with special needs more than before. If I can help, I want to help.

That’s why I don’t go on vacation by myself. Last year I went to Singapore for one-and-a-half months and brought Nicholas.

BLOOM: By yourself?

Bay Luu: Yes. We stayed with his dad’s family who can help us. A few years ago I went to Vietnam for two months and brought Nicholas. I have a family in Vietnam. It’s hard, but I can’t leave him. I would worry about how he was and whether he’s eating the right food. I will live with him till the last day of my life.

Below Bay Luu (centre) with her husband and three of their children, who arrived as refugees in Ottawa in 1976. The photo is from a 1978 article in The Ottawa Citizen. It notes that at the time of their escape from South Vietnam, Bay's fourth child, a 20-month-old son, had a fever and was left in the care of his grandparents.

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In dark times, reaching out

Our new A Family Like Mine video features a remarkable mother who wants to break the silence around mental illness.

Leomina Valderrama has two sons: Bryan, 22, and Brendell, 15. Since Brendell was born with cerebral palsy, seizures, and complex medical needs, Leomina has dedicated her life to his care. In recent years, her husband Gilberto struggled with depression. Leomina reached out to social worker Barbara Germon at Holland Bloorview to help her cope. Last April, her husband died of suicide. "My heart wants to reach out to those who are going through what I've been through personally," Leomina says. "There is help available when we don't stigmatize with the silence of mental illness, and raising a child with a disability is a challenge, but there is joy that comes with it." Here she talks about strategies to build her resilience as a single parent and move forward, as well as her fear of who will care for Brendell when she can't. Bryan talks about what he's learned from Brendell.

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Mom seeks to light the way for others

Photos by Storey Wilkins

By Louise Kinross

Narges Karbasi can only think of one medical interaction that wasn’t helpful when she learned her daughter Lilly had a rare genetic condition called 1p36 deletion syndrome.

“At her first birthday the neurologist gave us the results of a microarray test,” Narges says. “He said ‘This is the name of the syndrome, go and google it.’ He didn’t tell us about it. We googled it and we were in shock, because you always see the worst things [online]: she’s going to die, she’s going to have heart problems. It was the worst experience.”

But soon after, Narges spoke with clinicians, other families and even acquaintances that gave her back a sense of hope.

“We took her to the pediatrician and I was crying. I said ‘Did you see the report? She may not walk, she may not talk.’ The doctor said ‘Yes, she may not walk and she may not talk. But she can love.’ I thought yes, Lilly wants me, she loves me. These are the words that helped me a lot.”

After getting Lilly’s diagnosis, Narges and her husband Farhad initially kept the news to themselves. “It was like a grieving,” she says. “Before telling the world, we cried with each other and we screamed and shouted and said ‘why?’ When we told people, we wanted to talk about it in a very normal, happy way, because we thought if we cry or are sad, people will always look at her and think ‘poor baby.’ At first it was so difficult to talk about. I practised on people I don’t know. In the street, in the park. That helped me get used to the words so I could tell close family.”

Narges searched online and found a Facebook group for families of children with 1p36. “The moms there are amazingly supportive,” she says. “They have children from newborn to 40 years old. I can say that each is a doctor, a geneticist, because of all they know. You can ask any question and within a couple of hours you have hundreds of people responding with their experience. The other thing that helped me was seeing that there were so many parents who had adopted kids with the same syndrome. It’s one thing when this is my kid. But for parents to adopt not one, but two children, with this syndrome, and they have a happy life.”

One day Lilly was out in a stroller with a babysitter. A neighbor who was driving by stopped to ask the babysitter if Lilly was walking yet. She wasn’t, as her motor skills were delayed. The neighbor wrote a note for the sitter to give to Narges with the name and phone number of a physiotherapist who did Medek and had helped her daughter. “At first I didn’t like it when I got the note,” Narges says. “I thought why is she doing this? Then my husband said give her a call, maybe this is a sign.”

Lilly, who turns five next month, began walking last year, and Narges attributes it to the Medek therapy. “She couldn’t even roll or sit from lying when she started,” she says. “We are so excited for this summer because it’s the first summer she can walk. Lilly is a happy girl who loves to be independent. She fights for what she wants and she gets what she wants—it doesn’t matter if you understand her, or if she can’t say it, she will get it. She enjoys being outside and we’re so excited about having her first birthday party outdoors.”

Through the physiotherapist, Narges learned about the babies group offered through Holland Bloorview’s Play and Learn. Parents and babies attend weekly for sensory and motor play and live music. “Seeing so many moms like me and kids like Lilly was a great first step into this new world,” Narges says.

Every month an infant development specialist came to visit Lilly at home. “That service is so helpful. They come into your home and see how you live, and help me with specific things. For example, Lilly is very sensitive with what she eats, so the person made an appointment to come at her snack time so she could help with snack.”

Lilly then spent two years at Play and Learn nursery school. “It’s amazing. It’s like her home and she likes everybody. They plan for each kid and they love their jobs. The teachers even check on me, too. They’ll say: ‘How are you doing? Why are you not smiling today?’”

Lilly uses sign language and pictures to communicate and is attending kindergarten in our integrated education and therapy program in September.

Narges says she’s learned to live in the moment. “I stopped thinking of the future. If today Lilly is waving or pointing, a point is a word you can live a life with. I enjoy that moment without worrying about what should be next. There is no ‘what if’ in my mind anymore.”

Narges, who moved to Canada from Tehran, Iran with Farhad in 2009, says Lilly’s syndrome has brought the couple closer. “Our bond and love is way stronger. When you know you have a shoulder to lean on and someone who is always there to talk to, it helps. Being a believer in God has also helped me a lot. I said “If that’s what God wants for me, I should be on board.”

Narges says she prefers not to use the terms disability or special needs. “What I like to call it is unique, because I learn that every person is unique in his or her own way.”

Lilly has an older brother Dylan, and Narges says it’s important for him that the family “fights to be happy and to have as close to a normal life as possible. Disability minimizes the thing you can do, but as a family we never accept no for an answer. We never say, ‘okay, that’s not for us.’ Everything is for us. We always try to find a way. For example, we like to ski as a family, and through searching everything my husband found something Lilly can sit on and we can still ski together. Travelling isn’t easy, but we should do it. We don’t want Dylan to think ‘we can’t do this like my other friends because of my sister.’ We didn’t want his life to be on pause. We say this is the life we have and we try. If we can, we can. When he was younger, Dylan questioned why Lilly wasn’t walking or talking. That was a challenge not to minimize his feelings.”

Narges believes Dylan has developed many positive attributes because of his relationship with Lilly. “These siblings are going to be different kids. They’re going to be caring. I see how Dylan cares about his friends, how he sees people equally. He never points at someone who has a disability because he learns that that is who that person is.”

Narges likes to pair times when she takes Lilly to therapy with an activity Farhad does with Dylan. “So I will say ‘If you are playing football, Lilly will have speech therapy.’ She has a program and he has a program.”

Narges is a big believer in self-care for parents. “We need to do something we really like, even if it’s just for one hour a day. When Lilly went to Play and Learn each morning, I’d make a joke that the only thing I didn’t do is go to Tehran and see the family. I shop, I hang out with friends, I go to the coffee shop, I walk or go to the gym. Those two hours are mine. They become the best time of the day. We should find a time for ourselves, even doing nothing, but being on our own.”

Narges says next year when Lilly is in school full day, she’d like to volunteer at Holland Bloorview to help other parents. “They need to see one mother or father or family and say ‘they are happy, they have a happy life.’ That’s the most helpful thing. When you see a mother in real life who is laughing, dancing, having her life—it doesn’t matter how her kid is doing—she is happy and you think ‘Oh, maybe one day I can be that person.’”

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Mindfulness cuts parental stress, depression

By Louise Kinross

What would best support parents of adult children with developmental disabilities who’ve left school and fall into a black-hole of services to fill their day?

A six-week mindfulness group that taught parents to pay attention to their feelings and thoughts in an accepting, non-judgmental way, or a six-week group that gave parents information and support on how to get services for adults, many of which are wait-listed?

A fascinating study in the Journal of Autism and Developmental Disorders compared the two, and found parents in the mindfulness group reported significant drops in depression and stress, while parents in the information and support group did not.

“We forget that stress for these parents accumulates over time, and the demands become bigger as the child becomes an adult and service gaps are more extreme,” says lead investigator Dr. Yona Lunsky, a clinician scientist at CAMH who partnered with Developmental Services Ontario (DSO) and Community Living Toronto.

Yona worked with DSO to recruit parents who had applied for services into one of two randomized groups. The parents ranged from age 37 to 81. Their adult children were aged 16 to 40, with autism or other developmental disabilities. One-quarter of the adult children didn’t have anything to do weekdays during the study.

“The study looked at parents who came to DSO to access services, and who were focusing on their kids as opposed to themselves,” Yona says. “We wanted to see if we could teach a skill that doesn’t change the child’s situation, but changes how parents view and deal with it.”

Parents in both groups met weekly for two hours for six weeks. In the mindfulness group, they learned practices like the body scan—where they feel each body part, from toes to head—a three-minute breathing exercise, and a loving-kindness meditation. They also learned how to be more mindful with their child—for example, observing something about their child that brings them awe.

The goal was to teach practices that parents could use on the fly while juggling their many responsibilities. ”The demands in their day mean these parents are constantly pulled away from being aware of themselves,” Yona says. “We encourage them to use their senses to come back to themselves and pay attention to how they feel.”

It could be taking a moment before they get out of their car, or while sitting in a waiting room. “It’s just as important to notice ‘I’m upset, I’m tired, I’m exhausted’ as it is to notice ‘I feel good,” Yona says.

Self-compassion is a big part of the practice. Parents tend to have empathy for their children or the experience of other parents, “but they don’t take the time to have that same compassion for themselves,” Yona says.

“We’re teaching them how to be in the present moment, and how to be aware of a thought or a feeling without judging it. Perhaps today you notice some tightness in your chest or negative thoughts or feelings about your child: ‘I’m really frustrated.’ But if you’re not aware of that emotion, you can’t change your interactions or choices to help yourself. If you’re aware that you’re feeling frustrated, perhaps you pause, take a break, drink some water or do something else to take care of yourself. Maybe you ask someone to step in to help. It’s the idea of the parent putting on an oxygen mask in the airplane first, before putting it on their child.”

The parents who met in the information and support group listened to speakers on topics like adult day programs, residential care and mental-health services, person-directed planning and parent self-care.

Child care was provided for both groups and parents had a break for tea and a chat in the middle of each session.

Parents in both groups said the interventions were beneficial and they liked meeting parents in similar situations. Two years later, some parents from both groups continue to meet.

However, on a 14-item measure, parents in the mindfulness group reported significant reductions in depression and stress which weren’t seen in the information group parents. “Parents who did the mindfulness had an improvement from before to after, and they maintained that improvement 20 weeks later,” Yona says.

“We think it’s because they’re learning a skill that over time can help reduce stress and improve mood, and it’s not driven by success in your environment. If we feel happy because our child achieved ‘x,’ then our happiness depends on the child. But the issues these parents face—whether accessing a service or dealing with a behavioural or mental health problem in their child—don’t necessarily have immediate solutions.”

In the paper, the authors note that mindfulness “moves away from a focus on problem-solving to instead offer skills to cope with situations that are difficult and may not improve very quickly.”

Yona says next steps in the research include looking at virtual and other ways to deliver mindfulness training, what the best intensity of the intervention is, and how the makeup of the group influences outcomes.

You can contact Yona at Yona.Lunsky@camh.ca.

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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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