By Louise Kinross
Anna Marie Batelaan is a social worker at Holland Bloorview who works with children who have a brain injury as a result of trauma or illness—and their families. She provides emotional counselling and helps families connect with resources. “We recognize the whole family is impacted,” she says. “With acquired brain injury, the child is usually developing typically, and the brain injury has turned their life upside down.” One of the tools Anna Marie uses with parents is mindfulness meditation. She and social worker Dagmara Urbanowicz are bringing a new mindful self-compassion program to staff in the fall.
BLOOM: How did you get into this field?
Anna Marie Batelaan: I’ve always been interested in giving back and helping others. My first social work jobs were working with young offenders in a group home, and working with homeless women. My dad was an engineer with the National Research Council who made aids for people with disabilities. He worked closely with what was then the Hugh MacMillan Centre. My sister is a social worker and my brother is a fireman. We do a lot of helping in my family.
BLOOM: How would you describe your job?
Anna Marie Batelaan: Social workers do a lot. We’re there to help navigate young people and their families through the system. We help them understand the impact of brain injury now, and what they need to think about as they get older. We look at the big picture of things. We do a lot of emotional counselling to help them cope and adjust and move forward with their lives. We also provide them with funding resources and supports in the community.
BLOOM: What are the joys?
Anna Marie Batelaan: I find it extremely rewarding when families and young people come back to tell me how they’re doing. Last summer, one of my first clients, who I saw here when he was nine, came back at age 27. He wanted to visit and tell me what he was up to, and was thinking about volunteering here. It’s seeing young people and their families find a way forward that is still going to bring them a lot of happiness and joy. It’s being able to be a small part in their recovery at a time when they need help.
BLOOM: What are the challenges?
Anna Marie Batelaan: In health care we’re often asked to do more with less, and that can be a challenge when you know that what you’ve done in the past was really successful. For example, we used to be able to visit people in their homes and spend the time they needed to help with their adjustment on the outpatient side. Often it's six to 12 months after going home from hospital that people realize the brain injury is not going away. Home visits allowed us to see more easily how they were coping, and were very appreciated by the families. But when we changed our model of service delivery, we stopped doing home visiting, because we’re so busy with inpatients.
BLOOM: What emotions do you experience on the job?
Anna Marie Batelaan: The whole wide range of emotions. We’re here for the tears and sadness, but also for the laughter and excitement and joy of progress. Sometimes frustration comes up as well.
BLOOM: How do you cope with the emotional side of work?
Anna Marie Batelaan: I have strong mindfulness and compassion-based practices. I’m in my 10th year of mindfulness, and I’ve done self-compassion practices for three years. That’s helped me to really be there for myself. I’ve learned how to soothe myself in difficult emotional times, but still be present for clients and families. I’m not perfect. We all ‘fall off the cushion,’ as they say. But you’re kinder and gentler to yourself, and you’re able to get back on.
BLOOM: What are the practices that you do?
Anna Marie Batelaan: I do a formal daily practice of sitting on a cushion and doing a breath practice or a body scan or a loving-kindness meditation.
I think I’m getting much better at informal practice, where I catch myself in the moment and stop and take a breath and ground myself. I often do a three-minute breathing space in the transition between one client and another, so I can let go of what I was working on with one client, and be set up to work with the next one. There’s research now showing that clinicians who stop and do that have better outcomes with their clients and families, even though they aren’t aware that you’ve done it.
BLOOM: You and Dagmara recently took some training. Can you describe that?
Anna Marie Batelaan: It’s called Intensive Mindful Self-Compassion Teacher Training, and it was the first time it was offered in Ontario. It’s an international protocol started by Kristin Neff and Chris Germer. It’s training to lead an eight-week group where you teach compassion-based practices. These are compassion-based practices that involve mindfulness, self-kindness and common humanity.
BLOOM: How would you describe each component?
Anna Marie Batelaan: I like Jon Kabat Zinn’s definition of mindfulness. He says it’s paying attention, with intention and without judgment, to the present moment. It’s not getting caught up in worries of the future or thinking about the past.
Self-kindness is how we approach ourselves with more kindness and appreciation and care. The common humanity is that we’re not alone in this. All of us struggle, we all have challenges, and when we can recognize that, we can allow ourselves to take better care of ourselves.
BLOOM: Have your thoughts about disability changed in the 18 years you’ve been here?
Anna Marie Batelaan: I don’t think they have changed much. My views were shaped by my dad, who worked with so many people with disabilities. He would show me paintings by people who had painted with their toes, and I’d say ‘Wow, that’s so cool.’ He came into my grade school for Show and Tell and talked about the aids he designed. One was where you blew threw a straw to type.
BLOOM: What have you learned from the families you work with?
Anna Marie Batelaan: Families continue to teach me every day. They’re amazing in how resilient they are and how they take care of their children and find a way forward. If I was in their shoes, would I have the same amount of resiliency?
I like it when we do groups with families and they can share and learn with each other. The best way forward for families is to hear from another family: ‘This is the way you might want to try it.’
BLOOM: Do we run a group like that?
Anna Marie Batelaan: Right now there’s a parent group that runs at the same time as our Helping Hand constraint-induced camp for kids. It brings together inpatients and outpatients—and even outpatients from five to 10 years ago. We have themes and discussion, but the best piece is the learning they get from each other. It’s neat. They walk away feeling like there are common threads in all their experiences. They come from all over Ontario, and often stay in touch on e-mail or with FaceTime and texting.
BLOOM: Why did you decide to bring mindfulness to our parents and staff?
Anna Marie Batelaan: I’d been practising on my own and found it so helpful that I wanted to share the benefits. Five-and-a-half years ago I began a mindfulness group for inpatient parents. It ran for about five to six months and then staff starting asking me if I’d do one for them.
BLOOM: What do parents and staff tell you they get from these sessions?
Anna Marie Batelaan: They say they’re better able to be present, to take care of themselves, to regulate their emotions and make better decisions. Research shows that when you’re present, you’re happier.
Research also shows that 47 per cent of the time we’re not focused on what we’re doing, and when we’re not focused, we’re pretty unhappy.
BLOOM: Why is mindfulness and self-compassion important for parents of children with brain injury?
Anna Marie Batelaan: A lot of parents put their child first and they’re way down on the priority list, to the point that they’re not taking care of their basic needs—sleeping, eating well, or even taking breaks from the bedside. Mindfulness and self-compassion can help them start looking at what’s happening to them, and to understand that they need to take care of themselves in order to better take care of their child.
BLOOM: How have you changed as a clinician since you began mindfulness?
Anna Marie Batelaan: I think I’m calmer. In the past, I felt my emotions could take over sometimes, and I felt more anxious. Now I can be more present for myself and others. I'm better able to look at what I need to accomplish in a day, and I prioritize my work easier. I feel I can be a better listener and speaker—as far as choosing what I say and how I say it. I think I’m a better colleague.
BLOOM: Can you talk about the new mindful self-compassion group for staff?
Anna Marie Batelaan: Compassion is one of our founding values at Holland Bloorview. But to be compassionate, we have to complete that circle of compassion by being kind to ourselves. That’s where it starts.
The course will be three hours a week over eight weeks. We’ll look at how to work with our inner critic, how to become our closest ally, and how to better be able to be there for our clients, colleagues and our own families.
BLOOM: Can you describe one of the practices?
Anna Marie Batelaan: One of the ones I like best is the self-compassion break. You learn how to work with a small difficulty and, as you gain the skills, you can apply it to the bigger challenges in your life. It’s a way to deal with the pain that all of us carry within ourselves.
By Louise Kinross
Amina Aumeer is a social service worker student at Seneca College who just finished a four-month placement at Holland Bloorview supporting our Client and Family Integrated Care team. She worked closely with Adva Budin to administer the family support fund and our family accommodations. Amina and her twin sister Aaliyah—who have cerebral palsy—have been receiving services at Holland Bloorview “ever since I can remember,” Amina says. “I knew my client experience would add to my success here, but I didn’t realize how much it would contribute.”
BLOOM: What was the greatest challenge growing up with cerebral palsy?
Amina Aumeer: Having to prove to everyone that I’m still capable, regardless of my physical challenges.
BLOOM: What’s an example?
Amina Aumeer: Throughout school, I felt like I had to work three times as hard as others just to get the basic successes that everyone else had. Due to my disability, typing is a struggle. Watching you type right now I get so envious. Homework that would take someone else three hours to do could take me a week to two weeks. I still type, but I dictate my papers to a family member who types them.
BLOOM: Did you try any speech-to-text technology?
Amina Aumeer: I’ve tried Dragon Naturally Speaking and Speech Q, but neither of them are easy. With Speech Q it uses predictive text. That interferes with my thought process, because when I need to pick a predicted word, I forget the thought I had. Dragon takes a lot of practice.
I use my thumbs and fingers to type on my iPhone. So if I don’t have someone to scribe a paper for me, I will type my thought process and notes for the paper first on my iPhone. Then when I have to type them out, I can focus just on typing.
From a very young age, my parents were very honest and upfront about the barriers we’d face that might cause us to not have as much success.
Some friends and care providers told them they should be giving us more hope, but they said unrealistic or false hope was dangerous.
On top of our physical challenges, they talked about racism and being a woman. I also practise the Islamic faith, so that was another barrier. Intersectionality is the word we use at college.
BLOOM: Do you feel you are marginalized more in one of those areas?
Amina Aumeer: When I was young, my parents told me that my faith could impact whether or not I got a job, or whether I got into an academic program. As I get older and am in the real world, I’m seeing that kind of polite racism and polite Islamophobia.
My name Amina is a very prominent Muslim name. In high school, when the terrorist attack happened with ISIS in Paris, I got asked if I was a terrorist. I also had an incident with a caregiver where she basically got into a debate with me about how my religion is associated with terrorism. To always have to explain that it’s not can be trying.
BLOOM: I know you live far away from Holland Bloorview. How do you get here everyday?
Amina Aumeer: I live in independent living in Vaughan, with attendant care from March of Dimes. This morning I left at seven and got here by 10. I get picked up and dropped off at a mall that borders on the Toronto boundary. Then I have to wait for an hour to be picked up there and driven here. It’s a long way, and a lot of people, including my parents, said it wouldn’t be possible.
BLOOM: I can’t imagine how frustrating that journey would be.
Amina Aumeer: Actually, I’m kind of desensitized to ableism. I’m picking my battles, and the small things, which are not small things, I become used to. Just the other day I was at school and I wanted a Frappuccino from Starbucks and the barista wouldn’t acknowledge I was there. I was waving my money and saying ‘Hi, I have an order,' and she ignored me. So I went to Tim’s. As I was leaving the store, I could hear people saying ‘She was actually in front of me.’
Another example is if I’m taking the public bus, and the bus driver knows I’m the first in line. But he’ll let all of the able-bodied people on first because it’s easier, and I’m stuck out in the cold.
BLOOM: So you need to use the lift on the bus?
Amina Aumeer: Yes. The driver will acknowledge me and then tell everyone else to come on first. I’ve also heard drivers who are running late call me a wheelchair: ‘I have a wheelchair’ they’ll tell the dispatcher. I’m not a wheelchair.
BLOOM: How did you decide to go into social work?
Amina Aumeer: My mom is a social worker, and she inspired me. But my reasons for being a social worker are very different than my mom’s. My mom is a counsellor who works one-on-one with people in a shelter. I want to work with people with disabilities, but while I’ve been at Holland Bloorview, I realized I want more of a management role. I’ve learned that I’m very good at paperwork and capable that way. This has been my first work experience ever. Going into the placement, I thought if I have to do a lot of paperwork, my supervisor will be frustrated with me, because I can’t do it fast enough. But since being here, I’ve found ways that I can do the work in my own unique way.
What I love about Bloorview is that I’m not seen as a person with a disability or as an employee with a disability. I’m just a student. It’s such a unique place to work because people aren’t hesitant to approach me or speak to me the way they are in the real world.
When I was calling other organizations about placements, they said they didn’t know how they would accommodate me. My fear was that I’d be micro-managed and miss out on experiences because someone would say ‘Amina can’t handle this because of the chair.’
The first week here I worked with Addy as my supervisor and we figured out what I was comfortable doing. After that she said ‘Okay, I trained you, now you go and do the task.’ That was refreshing.
BLOOM: Why are you more interested in administrative or management work, as opposed to counselling?
Amina Aumeer: Before coming here, I thought I’ll become a strong advocate and work with families from a ground-work perspective. What I’ve learned is that I think I would have more of an impact working with a team of people.
Being involved in team meetings, and seeing the struggles and successes of managing a team, I’m thinking I could do something like that. Working here has given me so much opportunity because I work with a diverse team. I’ve been exposed to all these different areas. Whether it was Lori Beesley managing a team of family leaders, or Melissa Ngo, facilitating workshops.
BLOOM: Have your thoughts on disability changed over the years?
Amina Aumeer: I had a meeting with Jean Hammond and we were talking about disability as an asset, not an obstacle. As soon as we start seeing it as an asset—as lived experience—then everyone’s perspective automatically changes.
BLOOM: How has your disability been an asset in your work here?
Amina Aumeer: I was able to give feedback from a client perspective on the family support fund. I can connect and relate to parents’ experiences. Of course you can’t know everything they go through, but to be with them and empathize and be an ally, to the best of your abilities, and to hear their stories and feel their stories is the most important part. With the work I’ve done with Melissa with Parent Talks and Addy with Family Accommodations, I’ve learned that often parents don’t want to seem vulnerable. But allowing them space to express emotion, and knowing that emotions are temporary and that we can work through it along with the physical aspects of care, is important.
I realized that I knew a lot of terminology parents use—like Motion Specialties, and ADP and ACSD. When I went back to school and we had to debrief to the class, what I said was going over everyone’s head, because they weren’t familiar with these terms. For me, it’s just part of my life.
When I was in my interviewing class, my classmates said that the words I used and my body language were unique to my disability. So, for example, I can’t lean forward when I’m interested, but my tone of voice will become more enthusiastic. When my classmates tried to copy what I do, it didn’t translate well. My professor brought up disability culture, and said that the way I interact with able-bodied people and disabled people is unique to my own experience.
BLOOM: What do you enjoy doing separate from disability work?
Amina Aumeer: Advocacy consumes my whole life. I’m part of the youth advocacy committee with the Ontario Advocate. I’m in their We Have Something To Say report. I like Instagram, but I always end up posting stuff about disability advocacy. I was a panelist in the Bloorview workshop Creating A Life Your Child Wants. You saw the York Region newspaper article I did about problems with transportation? I love volunteering and giving back.
Learn more about work programs at Holland Bloorview.
'They tell me that it's different working with me'
By Louise Kinross
Gabriella Carafa is a social worker whose connection to Holland Bloorview goes back to her childhood, when she visited our neuromuscular clinic. Eleven years ago, Gabriella participated in Holland Bloorview’s The Independence Program, living for three weeks in a university residence to learn a variety of life skills. Since then, she’s worked as a youth facilitator at The Independence Program and at our Youth Weekend Retreat.
Three years ago she came on board as a social worker in our child development program, working with work with youth with cerebral palsy, spina bifida, spinal-cord injury, craniofacial differences and complex medical needs. She also provides social work support to young adults in The Independence Program.
BLOOM: What drew you into this field?
Gabriella Carafa: I wanted to be a social worker because I’ve always been interested in people’s emotions and supporting them to cope with their life experiences. I thought I could contribute greatly to working in children’s rehab because of my rich lived experience, in combination with my clinical skills.
My clients say it best when they tell me that I understand things and they don’t feel like they need to explain as much to me. They don’t have to explain about the frustrations around accessibility, or how hard it is to go out with your friends, because I understand. They tell me that it’s different working with me.
BLOOM: What are some of the common issues they bring to you?
Gabriella Carafa: The common issues are around acceptance of disability and self-esteem. Anxiety is a huge one and depressive symptoms, even if they don’t have a formal diagnosis. As they’re getting older, they recognize more things that they can’t participate in in the same way as their peers.
BLOOM: Do they also recognize the stigma of disability more?
Gabriella Carafa: Yes. If it’s not overt, it may be that they’re not invited to parties, because people assume they can’t go up the stairs, for example.
It’s not one of these things, but a combination of them: dealing with anxiety and depression and feeling like they don’t fit in or it’s hard to fit in.
BLOOM: What is the greatest challenge of your job?
Gabriella Carafa: My greatest challenge is supporting youth with complex medical and cognitive disabilities in their transition to adult services. In the adult realm, there are long wait lists for services and funding. For families who maybe had funding in the children’s system for respite—that ends at age 18.
Sometimes I feel helpless. I try to make families aware of all of the funding changes as soon as possible, and look at ways they can manage by increasing their support network and connecting with other families to advocate for system change.
BLOOM: What do you love about your job?
Gabriella Carafa: So many things. I think social work is a privileged profession. I’m a big believer in being vulnerable and being real, and in social work most of the time you see people at their most vulnerable, when they’re going through a tough time. I get to witness the strength of clients and families.
I ask those questions that other professions may not be asking, like ‘How are you coping?’ or “What has the impact of the diagnosis been on you and your family?”
You’re normalizing feelings they may not want to admit to other people.
Parents may be ashamed that they’re not coping well, and you create that space where they can just be honest without guilt or fear of judgment.
BLOOM: How do you cope with some of the emotions that come with your work?
Gabriella Carafa: I am working on not taking the work home. That doesn’t mean I don’t care. Making sure you have activities you do outside work that you enjoy is important. I also have a lot of social worker friends—some here and others not—and we can lean on each other for support.
What’s hard is when families think I should do more to change all the systems in adult services. When families want me to do more than I can, it’s hard on me.
I feel proud that I do this work and I feel I make a difference by creating a safe space and providing families with the information they need. They feel they have someone in their corner.
BLOOM: I know you also supervise social work students.
Gabriella Carafa: I hope social workers coming into the field have a better understanding of disability, and I work hard to provide that both as a social worker and as a person with a disability. I can educate future social workers around disability and the stigma that comes with it. I support them to develop an anti-ableist practice.
BLOOM: You said your understanding of independence has changed since you went to The Independence Program as a client.
Gabriella Carafa: I recognize that our traditional ideas about independence aren’t possible for every client, so why are we thinking about independence this way? With medical advances, a lot of youth with complex needs are living longer.
Until I began working as a social worker here, I didn’t have a thorough understanding of the wide variety of disabilities our clients have. Most of the youth I work with have complex needs. Many won’t go to post-secondary education, move out on their own, get a job, or volunteer, and that’s okay.
Even the people who are going to The Independence Program have changed. We have more people with cognitive, rather than just physical, needs. These are individuals who may never live independently in the traditional sense. But that doesn’t mean they can’t build skills and recognize when they need support.
BLOOM: I was speaking with a colleague whose family is from Ethiopia. She said our obsession with ‘independence’ as the end goal of life is hard for them to understand.
Gabriella Carafa: Western ideas of independence are not reflected in many of the cultures we serve here. And whether or not you have a disability, people are living with their parents, spouses, children and grandparents, and the families are interwoven and interdependent. Why is that a bad thing?
On the other hand, we do have situations where the youth wants to be independent, but culturally the family doesn’t believe in that. They don’t want their child to move out.
Some parents experience grief when they realize traditional independence may not be possible for their child. However, that doesn’t mean there aren’t other possibilities for having a great life as an adult. That’s why we need to continue having transparent conversations with our clients and families that explore what is possible.
BLOOM: If you could change one thing in the health system, what would it be?
Gabriella Carafa: Adult services as a whole. I think we do a really good job in the children’s system, and adult services need to reflect that. I wish the adult systems were better connected and that adults with disabilities had more funding available to them. And I wish the systems reflected people with diverse identities and needs. Ha—that’s a lot!
BLOOM: What have you learned from families?
Gabriella Carafa: That they’re resilient. That’s what I’ve learned.
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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