By Louise Kinross
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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