Friday, June 24, 2016

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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Wednesday, June 22, 2016

A problem focus misses 'the opportunity to get kids to thrive'

By Louise Kinross

Dr. Evdokia Anagnostou is a neurologist and clinician scientist in the Autism Research Centre at Holland Bloorview. She is also a Canada Research Chair in translational therapeutics in autism. We talked about her role in clinic and conducting research.

BLOOM: Why did you get into working as a clinician scientist with children with autism?


Evdokia Anagnostou: It started as a puzzle. When I was training as a resident in neurology, I was used to seeing a child and, based on the signs and symptoms, knowing which part of the brain was involved. If the child couldn’t move their right arm, I knew it was a part of the brain on the left side that was responsible. For most problems in child neurology we can identify the location, and sometimes the nature of the difficulty, based on signs and symptoms, before ordering tests. But when it came to autism, there was no way of figuring out what was happening in the child’s brain based on signs and symptoms. It was curiosity that got me into it.

BLOOM: What does a current day look like for you at work?


Evdokia Anagnostou: My current schedule is 20 per cent clinical—so I see 10 to 12 kids in clinic one day a week—and four days or 80 per cent is research. On a typical research day I’m seeing kids who are coming to be part of research protocols, writing and reviewing grants, writing papers and analyzing results, and meeting with granting agencies, government organizations and senior administration.

BLOOM: What is most rewarding about your job?


Evdokia Anagnostou: I think I have the best of both worlds. I get to work really hard to invest in the future of children with neurodevelopmental disorders by doing research, but I also get to contribute to the lives of kids right now by keeping my clinic day active. So I feel like I’m contributing on a day-to-day basis and to changing the future.

BLOOM: What is the greatest challenge?


Evdokia Anagnostou: Managing a balance between clinical and research time. Let’s say I see a child during clinic day on Monday, but that kid gets into trouble on a Thursday, which is a research day. I can’t say ‘I’m sorry, I can’t do anything until my clinic day.’ We need to meet the needs of the kids as they arise.

Another would be building a large research group based on research funding, and making sure you don’t lose that funding. You have a whole group of 15 to 20 people depending on you for their job. There’s constant grant writing and running after funding agencies to maintain or increase our funding.

Another challenge is figuring out how to do the most you can with the resources you have. On the clinical side, there are what we think should be standard services that are unobtainable given the envelopes of money we have from the various ministries. So figuring out how to meet the most needs with the money we have, and being creative about it.

Finally, it's challenging trying to develop therapies without fully understanding the biology of the differences we see with autism spectrum disorders

BLOOM: Which of your research projects is most promising?

Evdokia Anagnostou:
Our most promising project is with the Province of Ontario Neurodevelopmental Disabilities Network (POND). That’s because the network admits that we don’t understand how a variety of neurodevelopmental disorders like autism, ADHD and intellectual disability are different in terms of their biology. So POND takes the approach that we are going to understand first the biology by understanding the genetics and brain structure and function, irrespective of what diagnosis the child has. And then develop treatments for that. It’s most promising because sometimes we label kids for a variety of reasons in ways that don’t necessarily reflect what is happening in their brain and therefore our treatments tend to fail.

BLOOM: Have your thoughts about autism shifted over the years?


Evdokia Anagnostou:
I started thinking of autism as a neurological disorder. I still think it’s a group of neurological disorders, but right now I’m much more aware of it as a difference than a disorder. I’m aware of all of the distress and dysfunction it can produce in kids and families, but I’m also aware of the strengths it can produce in certain areas and the value people with autism see in their difference.

BLOOM: How could we better support parents of kids with autism?


Evdokia Anagnostou: I think this is an area where we have done particularly poorly. The needs of parents of kids with autism and related problems vary from learning skills to help their children to learning how to see the strengths and beauty in the difference to getting support from other parents and understanding that their situations are not unique and there is strength in numbers.

We need to help parents learn that they have the ability to advocate and change the environment for their kids with special needs. And parents need to partner with their kids as they grow up to produce better outcomes that are desired by the kids themselves—instead of what we think is important for the kids.

BLOOM: What advice would you give yourself now, if you were just starting out?

Evdokia Anagnostou: I would give myself a couple of pieces of advice. One would be that although it’s very important that we understand where the dysfunction and distress comes from, a strengths-based approach is something you need to be engaged in from the beginning of your research. Otherwise, you learn the hard way that if you only see the negatives in the difference you don’t appreciate the strengths and the value that people see in their difference and therefore your approach for intervention is limited.

The other piece would be to be prepared for the long haul—meaning that it takes a long time to actually see concrete results. If you’re going to be a clinician scientist in this field you need to be able to delay gratification. It’s extremely rewarding and you will make differences in kids’ lives, even if particular days look more distressing. And families and kids are your partners in this journey.

BLOOM: What have you learned from the families you work with?


Evdokia Anagnostou:
I’ve been in awe of their resilience. I have learned to take a strengths-based approach and to actually look at the things the families and kids do well and work on those.

Initially, when you’re a young investigator, you see the distress and you just want to fix it. It’s a more naïve approach, to see all the things people are failing at and to work on those. I haven’t changed in the sense that I still believe you have to go after the things that produce distress, but that’s not the only way to improve quality of life, and, in fact, it’s a very narrow way.

If you only work on the things people are weak at, they never become great at them. But if you work on things kids are good at so that they develop a skill set where in some areas they struggle and in some areas they thrive, that produces a balance. The areas where the kids are thriving are more important for their quality of life. If you focus on problems, you miss the opportunity to get kids to thrive.

BLOOM: If you could change one thing about your job, what would it be?

Evdokia Anagnostou:
More than 24 hours in a day.

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Monday, June 20, 2016

Changing the stories we tell about disability and families

By Louise Kinross

Recently BLOOM reported on research about the role of hope and the invisibility of dads in children’s rehab. This was produced by Parenting Matters, a team funded by the Canadian Institutes of Health Research to study what it means to parent kids with disabilities like Down syndrome, autism or cerebral palsy. Scientist Lucy Lach, an associate professor in the School of Social Work at McGill University, is the co-principal investigator of Parenting Matters. She also has a unique connection to families at Holland Bloorview and has raised two children with significant learning disabilities. She’s working with Dr. Peter Rosenbaum from McMaster University and Dafna Kohen from Statistics Canada. BLOOM interviewed her about her work.

BLOOM: In 1980 you worked as a summer student at what was then the Ontario Crippled Children’s Centre. Was that your first exposure to disability?

Lucy Lach: Yes, I worked in accounts payable and purchasing. I had had one singular experience with a student in a wheelchair at my high school, but during that summer I got to see and know kids with a variety of disabilities who were receiving services there. I was 20 years of age and was completely taken with the culture of the institution. I don’t think I realized it at the time, but in retrospect it is here that I learned how special the culture of pediatric centres is.

BLOOM: What was that like?

Lucy Lach: I became caught up in the culture of what is now Holland Bloorview—in how positive it was and how the kids were treated by staff and how special the staff were. It was a wonderful place to be as an emerging adult. During that period I began doing some volunteer work at the Bloorview Children’s Hospital at Leslie and Sheppard.

BLOOM: What did you do?

Lucy Lach: I just hung out. I was there to be a peer. I played with the younger kids and took the older ones outside to engage with the environment. This allowed me to begin to get to know these young people whose ways of communicating and thinking were different from what I had experienced. Although these lives were viewed as tragic and unfortunate, I learned that there was a different story to be told. These children had a liveliness and a beauty that I had not been exposed to or fully appreciated before.

BLOOM: As a social worker at SickKids, you later ran support groups for parents of children with intractable epilepsy at Bloorview. What did you learn from that?


Lucy Lach: How our systems are failing them. I learned about what the kids’ and parents’ struggles were in day-to-day life: trying to balance work and appointments and ensuring their kids were safe, and managing these very unpredictable seizures, sometimes at night or at school.

I learned how the complexity of what they went through on a daily basis was missing in the literature and in the snapshot of time we had with them in the clinic. When they came to see the neurologist they would have 15 minutes at most.

The support groups helped me to get at that deep experience and to ask questions of them when they were in clinic in a different way—to elicit stories not just of despair or challenges, but also of how well they were managing. And it made me feel humble as a practitioner to realize that I didn’t always know how I could be helpful to people who were referred to me. I learned to feel okay approaching parents by saying: ‘I don’t know how I can be helpful, but help me understand what concerns you the most, and what you would most like to talk to me about.’

BLOOM: Working with this population must have been difficult. 

Lucy Lach: It’s so very hard for them, that’s absolutely true. But you know what? I also heard over and over again how they figured that out, how they managed it. So the story about grief and sorrow was also a story about amazing accomplishments, abilities and triumphs. In fact, I’m more prone to tell you about the latter. These are parents who didn’t allow the unpredictability of these events to rule their family life. They incorporated them somehow.

One of the most important things was to engage a community of peers. In the best-case scenario, when a child had uncontrollable seizures, one of the factors that allowed parents to say ‘Okay, you can do this’ was if their child had friends who knew what to do in the event of a seizure to ensure they were safe.

Safety was a primary concern. Sometimes professionals involved would make judgmental comments about how overprotective and indulgent the parents were. That drove me nuts.

Often school was a huge issue. Parents were told the student could come back when their seizures were under control, but the seizures would never be under control. So a significant part of my role was advocacy to help school understand that sometimes you just had to manage the seizures and the behaviour as opposed to eliminating them.

BLOOM: What were the rewards of this work?


Lucy Lach: The rewards were daily because I was there so long that I got to see kids grow and to see parents grow to become amazing and effective advocates.

BLOOM: Why did you decide to move into the research world?

Lucy Lach: At the time I was working in the epilepsy clinic, the research was filled with assumptions about families’ experiences of their child. It was mostly very negative, as it continues to be today. If you skew research questions so that they enquire exclusively about negative experiences, you will inevitably obtain answers that contribute to a story about trauma, negativity, pathology and distress. But if you ask parents if having a child with a disability was, in any way, growth-enhancing, some will tell you you’re ‘off your rocker’ while others will thank you for the question.

What I’m trying to say is that research contributes to a story about families and this story is a social construction of some reality that ends up being what people believe as being ‘true’ about themselves. If you document the complexity of the story, or a different dimension, the plot thickens.

BLOOM: When you first got involved in research it was about outcomes for kids following epilepsy surgery, right?


Lucy Lach: Yes. Although the neurosurgeons and neurologists were extremely hopeful about the promise of this surgery, our clinical experience was slightly different. The procedure was successful in improving seizure control, but families didn’t see the changes in quality of life they had been led to expect: they didn’t see changes in their child’s cognitive skills or behaviour. So my colleagues and I designed a rigorous study to generate findings about outcomes we could be more confident in.

This meant we could share fully with parents, before they consented to surgery, that this procedure will not significantly alter your child’s cognitive skills and behaviour one to two years out. We were happy to be able to be as truthful and honest as we could during the consent procedure and that consent now involved full disclosure.

BLOOM: That must have been incredibly disappointing for families.


Lucy Lach: Absolutely. Parents would come back after the surgery and say ‘now can you do some surgery on my child’s behaviour? Can you fix that?’ There, the idea of ‘managing’ as opposed to ‘fixing’ was really important. Maybe we can’t fix it, but we can help by better articulating and adjusting your expectations so that you can better manage your reactions.

BLOOM: Why is the Parenting Matters research needed?

Lucy Lach:
The question that drove that whole enterprise for me was another taken-for-granted assumption in clinical practice about overprotective parenting and whether it was damaging for kids with neuro-disabilities. There were, and are, assumptions about how terrible it is that parents don’t allow their child with disabilities to do certain things, and if only they would stop hovering, then their child would be okay. My hunch was that this was a complete oversimplification of the complexity that families faced.

So Parenting Matters has generated quantitative and qualitative data that has begun to make the narrative about these children and families more complex and stir up a bit of controversy about previous assumptions.

BLOOM: What are the main Parenting Matters projects?

Lucy Lach: One is a systematic review of the literature on parenting of children with neuro-disabilities. A second is analysis of a large Canadian population-based dataset on parenting and rates of separation and divorce among parents of children with these disabilities.

The third is an environmental scan of policies and programs for families, where we provide links to information on services, respite care and tax forms by province.

The fourth project is a clinical study of 263 Canadian children with various disabilities. The data was collected at Holland Bloorview, as well as in Montreal, Calgary and Edmonton. Parents completed measures about the complexity of their child’s disability, their behaviour, quality of life, family environment, co-parenting relationship and marital system, and adequacy of social support. That’s where we also looked at overprotective parenting and quality of life.

BLOOM: Do you have results from the large dataset?


Lucy Lach: Yes. We learned that parents who have a child with a neuro-disability don’t differ from parents who have a child without a neurodisability (or problematic behaviour) in how positive and consistent their interactions are with their child. The downside is that they experience themselves as more ineffective as a parent.

BLOOM: Why do parents of kids with neuro-disabilities view themselves as less effective?


Lucy Lach: That's a really great question. That measure, of effectiveness, also taps into how negative parents feel about their parenting relationship so I think it has to do with expectations they have of themselves and of their child.

BLOOM: Do you mean that parents of kids with disabilities may be great parents, but they may have unrealistic expectations about their child that make them feel inadequate? Or, do you think that in general our culture’s tendency to value achieving certain milestones influences how parents feel when their child doesn’t?


Lucy Lach: All of the above. It’s a classic psychological explanation versus a sociological explanation and both can be valid. There are things you internalize from society about what a parent should be and look like and do, and how a child should respond. Then there’s the actual transaction that happens on the ground. It’s not either/or—one informs the other.

BLOOM: I think we can do a whole story on that! When will you have results from the clinical study?

Lucy Lach: We have two doctoral dissertations. One tests the role that adequacy of social support for the child and family plays in a child’s quality of life. The other examines the role that parenting attributions and behaviours play in families’ experiencing their child’s disability as having a positive or negative impact. We found in the first that when a parent feels like their child’s and family’s support needs are more adequately met, their child’s life quality is higher, even in the face of high levels of neurological complexity.  Next on my agenda is to examine the role that ‘overprotective’ parenting plays in child outcomes.

BLOOM: You have teenage twins with significant learning disabilities. Did your earlier work in the field of disability help you navigate some of the issues your own children faced?


Lucy Lach: Well, it was certainly hard to be on the receiving end of schools that were being judgmental and difficult with my kids and particularly with my son. Sometimes educators had already made assumptions about my son—they’d diagnosed him before anyone had actually administered a test. But absolutely, my research informs my parenting and my parenting informs my research.

BLOOM: What have you learned from raising your kids with learning disabilities?

Lucy Lach:
That they’re not like me—they have other strengths that I don’t have. They are both socially gifted and can talk to anyone. As a child I loved to read and learn and study and my children are not like that. They are happiest when they are interacting socially. I get that, but as a mother it has been a bit of a struggle to not apply my standard to them.

BLOOM: I feel that we still devalue people who think differently—particularly in academic settings. Scientist Barbara Gibson here talks about the moral hierarchies of movement, and how we influence children’s development because walking is seen as the only acceptable way to get around. But I think we have moral hierarchies about intelligence. We make it so obvious that we value academic intelligence, yet we have many clients who have learning and intellectual disabilities. How do we convey the value of different ways of thinking? Could there even be advantages to different ways of thinking?

Lucy Lach: We definitely need to valorize different ways of knowing. There’s an emerging literature on different types of intelligence that is slowly making its way into the mainstream.

BLOOM: Have your thoughts on intelligence changed over the years?


Lucy Lach:
Absolutely! I had no choice because my default position is to recognize strengths and abilities as opposed to inabilities. That’s how I operate. When I describe my kids as socially sophisticated I mean they have amazing social skills and intelligence and if they can capitalize on that in some way, in a pro-social way, then they’re going to be okay. Yet my kids have had no exposure to help them recognize the importance of their social intelligence. In fact, if anything, at times it has been devalued and mistrusted. What about work in the trades? What about sales? What about services? They’ve had no exposure to that. It’s really frustrating because choice matters.

BLOOM: I find it interesting that there are a number of studies about self-reported quality of life in people with Down syndrome, and typically the participants rate their lives very highly. But when you mention this to people who study quality of life, they discount the studies.

Lucy Lach:
I find that fascinating. Some of the quality of life research I’ve been involved in subsequent to epilepsy surgery has looked at child and parent ratings of the child’s quality of life and the child inevitably rates their quality of life higher. Quality of life literature is a ‘dog’s breakfast’ quite frankly. So when you say ‘quality of life’ and another person says it, you may both be drawing on completely different assumptions and dimensions.

BLOOM: Knowing that parents of kids with disabilities are at greater risk of mental health problems, is there anything specific you do to take care of yourself or build your resilience?

Lucy Lach: Ha! For years I just ignored it. Now I recognize that between working long hours and my kids and husband and hitting age 56 this year, your health can go a bit sideways. I’m paying more attention to how much I’m walking, what I eat, and whether I go for regular checkups. And I do take vitamin supplements.

BLOOM: If you could change one thing in our health or social supports for families of kids with disabilities, what would it be?

Lucy Lach: We have navigation services spread across different sectors and institutions. Yet families experience feeling lost and uncertain. They don’t know what to access, where to access it, and how. We need to focus our efforts across diagnostic silos to make sure that every parent knows what they and their child are eligible for and to give them the tools to make informed choices.

We also need to be doing more to create opportunities for parents to support parents. There are things parents can say to one another that a professional could never say to them. There’s a street ‘cred’ there. In my next phase of research I’ll be designing peer support groups online—for parents across disabilities, not just within a disability group, who have children at similar developmental stages. I’m currently running focus groups to figure out what they need, how they would like it delivered, and by whom. No sense in doing anything without first hearing from parents.




Thursday, June 16, 2016

The adventures of Team Jake

By Marcy White

“You’re having strangers stay at your house?” asked my friend tentatively.

“On their honeymoon?”

“Well, we’ve never met,” I said, “but they aren’t strangers.”

My friend was mortified.

I didn't think it was weird, and I wasn't worried, despite the fact that our only exchanges with this couple had happened on Facebook.

Kelly and her fiancé Kevin were part of Who I Run For, a Facebook group that pairs children and adults with disabilities with athletes to create a mutual support system. The athletes and their training and events provide excitement for those who can't be as active, and the buddies with disabilities provide a new kind of purpose and motivation that power the athletes’ workouts.

My 14-year-old son Jacob was matched with Kelly, who lives in New Hampshire, in 2014.

From the day they were matched, Kelly posted messages to Jake about her running adventures. She almost always included photos from her runs and it became clear that Kelly had recruited her fiancé, Kevin, and her son, Nick, to run for my son as well. Together they formed Team Jake.

As time passed, our family got to know Kelly and her family. We saw photos of them holding homemade signs that read We Run 4 Jake along the routes of their runs and we shared Kelly’s stress around the wedding plans, including the last minute aggravation with her wedding gown!

Team Jake came into our lives around the time that Jacob's health started to deteriorate. We didn't know Kelly during the 12 years that Jacob's health was stable and he was able to ski, attend sleep-away camp and be a full-time student. She wasn't around when we fought, successfully, to have Jake attend a regular school and she missed the time Jake was invited to listen to his favourite singer, Andrea Bocelli, rehearse before a concert.

We were matched shortly before Jake spent almost a year living in the hospital. Kelly was in our lives when Jake was rushed to the hospital and spent weeks in the intensive care unit, hooked up to machines helping him breathe. She was around when he celebrated his Bar Mitzvah as an inpatient. Kelly and her crew stayed abreast of Jacob's challenges and frequently sent notes of support and upbeat messages to us. She also sent Jake medals from races and t-shirts and other running paraphernalia that she, Kevin and Nick collected.

One cold Sunday morning, when my husband, Andrew, Jake and I were having our weekly coffee at Starbucks, my phone alerted me to a message from Kelly with the most exciting and unexpected news: she and Kevin were coming to meet Jake on their honeymoon.

They planned their post-wedding week so that they would arrive in Toronto on a Friday and we invited them to stay with us for the weekend.

How perfect would it be if the newlyweds and Jake could run a race together? It didn't take us long to find a race that coincided with Kelly’s and Kevin's visit. After a brief discussion with the race director, Kelly informed me that everything was set—they would run the race with their buddy and push him across the finish line.

It all sounded great in theory, but would Jake be healthy enough for the 30-minute drive to the race?

The run was scheduled to begin at 9 a.m., but my son hadn't been out of bed before 11 in over a year. That’s because it takes a long time to clear his airway so that he can sit up in his chair without struggling to breathe. And just two weeks earlier Jake was so ill that he narrowly avoided an ICU admission.

But Jake being Jake, and one to never miss a party (except for his 14th birthday when he was so sick he slept for almost five days) or a chance to be surrounded by friends, we had to try. So we crossed our fingers and made the plans.

I was only a little surprised when I went into his room at 7 a.m. on race day and saw a pair of large green eyes, fully awake, ready for his latest adventure. He was excited and blinked his eyes to confirm that he was ready to run with Team Jake!

Dressed in a teal blue t-shirt that read Kelly And Kevin Run For Me, my son fit perfectly between his runners, who were wearing the same shirts with the banner I Run For Jake. As they crossed the finish line, the trio gladly accepted their medals and posed for photos. 


Marcy White is the author of The Boy Who Can: The Jacob Trossman Story. You can follow her on her blog at Cure PMD. Marcy is a family leader at Holland Bloorview.

Wednesday, June 15, 2016

Good care? It starts with R-E-S-P-E-C-T, student says

By Louise Kinross

Emily Chan, 19, has come full circle.

This summer she’s a researcher in the Ward Family Summer Student Program at Holland Bloorview.

As a University of Toronto student who just finished her second year in mental health studies and health policy, Emily hopes to become a clinical psychologist working with children with disabilities.

To her studies she brings a lifetime of firsthand experience. Emily, who has a rare neuromuscular condition, spent the first six years of her life living on the complex continuing care unit at Holland Bloorview. She’s attended our reverse-integration kindergarten, volunteered to bring a patient voice to research projects here, participated in life skills programs and is currently co-chair of our youth advisory.

“I’ve had many people come up recently and say ‘What are you doing here?’” Emily says. “When I say ‘I’m working as a researcher’ and show them my orange badge, especially those who knew me as an inpatient, they’re shocked.” BLOOM caught up with Emily since we last interviewed her.

BLOOM: What did it feel like to walk through the doors of Holland Bloorview as a research student after your life-long connection as a client?

Emily Chan: I’ve come here for so long and seen so many staff working here, and to be able to now be one of them, feels very surreal. I have so much respect for everyone that works here and now I’ve joined that community of workers. It’s an honour for sure. I love the work that we do here and it’s nice to be part of something you can relate to in a very personal way.

BLOOM: Why did you want to be a student here?

Emily Chan: First of all I have a sense of familiarity. I’m very familiar with the people here, the researchers as well because I’ve participated in research. I know a lot of the clients here. It came naturally to gravitate here. Somewhere else I would feel more out of place. Being able to contribute to the whole of what we do is unique because I used to be part of it and now I’m helping to contribute in a different way.

BLOOM: What do you hope to learn?


Emily Chan: I hope to be able to apply knowledge I’ve learned at school to a real-life setting. I also want to learn how more about how the hospital conducts research and the internal workings of research: the ethics of it, how to write up a research proposal, how to conduct a study—skills that I’ll be able to carry with me through the rest of my academic career. I know the work we do here is so special and I’m interested to see the impact it has on children and families.

BLOOM: I know a lot of the buildings on the downtown campus of U of T aren’t accessible. What’s it been like to be a student who uses a wheelchair?

Emily Chan: I’m on the Scarborough campus, which is great. It’s very small and nice in the sense that I have a real sense of community with my peers and I see people I know and cross paths with them often. The Scarborough campus is also only a 10-minute drive from my house so it frees up a lot of my time to do extracurricular clubs. 


All of the buildings are modern and relatively new and there are lots of elevators and ramps already in place. Many of the buildings are interconnected so in the winter I don’t have to go outside in the freezing cold with snow on the ground and pray my wheelchair doesn’t break down. The structure of the campus is very accessible. The elevators do break down but there’s nothing I can do about that.

BLOOM: When we last spoke you talked about how you’d been teased because of your disability in Grade 2. And that at high school, some teens taunted you. How are you treated as a person with a disability at U o T?


Emily Chan: It’s shocking to me but I feel very much like any other student there. I used to always be stared at and feel out of place and obviously different from my peers. But at university—I don’t know if people have matured or it’s just the nature of the community—but I don’t get stared at very often. I don’t feel significantly different from my peers. They’re always willing to lend me a hand if I need something to be moved out of the way or if my table needs to be adjusted. They’re very accommodating and understanding. I haven’t had a bad experience there which is very interesting. I’m quite surprised.

BLOOM: What research project are you working on here?


Emily Chan: I’m working on a project with Sally Lindsay that looks at the benefits of volunteering for youth with and without disabilities. I’ve interviewed a bunch of participants and asked about their experiences: What they’ve gotten out of it, the benefits and challenges. It’s an interesting project because I myself have volunteered here for the last four years. When I’m doing my analysis it makes it easier for me to understand what people are saying because I’ve been through the experience.

BLOOM: What volunteer work have you done here?

Emily Chan: I’ve been a youth mentor and sat on a couple of research projects to give the perspective of youth who’ve had clinical experience here. I’m now the co-chair of the youth advisory council.

BLOOM: What part of the research on volunteering are you working on?

Emily Chan: I’m in the middle of analyzing the interviews for major themes. I’m working towards a poster presentation at the end of the program.

BLOOM: Has anything about the research surprised you?

Emily Chan: I think one thing that youth with disabilities struggle with a lot is finding their place in the volunteering world. As a person with a disability you can think 'how am I supposed to be able to contribute to society when the idea that people have is that I’m the recipient of volunteer services?' We have to turn the tables around. Youth with disabilities have something to offer and we don’t always need help. It’s a newer concept for people to grasp.

BLOOM: Do you think youth feel hesitant to apply for volunteer work because of stereotypes about disability, or do you think when they do apply, they may face negative attitudes?


Emily Chan: I think it’s a bit of both. They might feel scared to reach out and say ‘Hey I’m a person with a disability but I’m very interested in volunteering. Would you have anything for me to do?’ They might be afraid people will say no. It’s also an attitude thing that people perceive us as not being able to help but needing help. The word ‘help’ is a bothersome word that creates a hierarchy between the ‘helper’ and ‘helpee.’ The helper supposedly has something the helpee doesn’t have, that they’re lacking. That creates an unequal relationship between two people.

BLOOM: What does your personal experience with disability and Holland Bloorview bring to your research work?

Emily Chan: I lived here for the first six years of my life so I’ve received a lot of care and help from different people on that end. After I was discharged and came home and was growing up I felt an obligation to give back, so I came back and volunteered. I’ve also participated in Youth at Work and other life skills programs. Youth at Work was major in helping me develop skills. They gave me that hands-on experience to go out in the community and be able to find and work a real job for two weeks. So I’ve had a lot of experience that I can apply to the research I’m doing now.

BLOOM: What’s been the biggest challenge of being a research student?


Emily Chan:
Getting people to not see me as a client and more as part of the staff. It’s a little bit of a role shift for me and them. I need them to treat me more or less as an equal and not so much as a client who requires services here. And I have to make people see I’ve grown up and developed my own mind and I know what I’m doing and don’t need someone’s assistance—not that assistance is a bad thing. I need to break that image of me being a client as opposed to a researcher here. It seems that seeing a former inpatient who was discharged and came back into Holland Bloorview in a different role is not something they see often.

BLOOM: Would you like to see anything change in clinical care or research about children or adults with disabilities?

Emily Chan:
I think incorporating more of a client perspective here. Clients who have been discharged or are within the system have a lot to say about the workings of Holland Bloorview. Who else knows it better than people who have been through it themselves? About six months ago I approached the new CEO, Julia Hanigsberg, and said ‘I used to be a former client here and I have some things I want to discuss with you about it.’ She was willing and we had a nice conversation about my observations. I think it’s being able to embrace different lenses on how you approach an issue. We’re taking steps in the right direction but I think we could have more youth on different research projects to give their perspectives.

BLOOM: It would be wonderful to also adapt our research so that people who don’t speak conventionally can have a voice.

Emily Chan: Just yesterday I went to a talk where a researcher spoke about a project where she had people draw their interpretations of what it’s like to have a concussion. We rely so much on verbal communication that we can forget about other forms. Having a drawing can be so rich in and of itself. Sometimes words can’t capture the whole image of what you’re going through in terms of your feelings.

BLOOM: What advice would you give staff working with children with a variety of disabilities?

Emily Chan: Respect them. Respect is a very major one. We need to break down that barrier between helper and helpee and make it more of a collaborative effort. So instead of saying ‘How can I help you?’ ask more questions: ‘How can we work together to further advance your quality of life?’ We need to bring the client and family in as an integral part of care and knock down that barrier between clinician and client. Even though the clinician might be an expert in their field, the child is the expert in their own lived experiences. It’s important not to make assumptions.

BLOOM: What about advice for parents?


Emily Chan: A lot of disabilities can come with the whole mental burden of not being able to do the same things as your peers. Not being able to walk like your peers or not being able to communicate on the same level. It can be very mentally frustrating. I have some friends who struggle with feeling that no one in this world understands what they’re going through, because they have such a unique set of lived experiences. As children here grow older they can realize that they’re different from their peers and it can be a very isolating feeling. We need to start conversations by asking if someone is mentally okay, not just if they’re physically okay, and if there’s anything we can do to support mental health. We need to be very open and not treat issues like depression or anxiety as a taboo topic.




Friday, June 10, 2016

Confessions of a 'super sister'




By Helen Ries

For many of us, the sibling relationship is the longest and deepest relationship we experience in a lifetime.

This is certainly true for my brother and me. When he was born in 1972 he didn’t come home from the hospital right away. The doctors told my mother they needed to run some tests.

I can still remember my deep disappointment that the promise of a baby brother was taking so long to materialize. When he did finally come home, there was nothing better than dragging this baby around, dressing him up and pretending to feed him.

As we got older, he was my constant shadow. I made sure he was included as we played games with the other kids on our street. He was always there and under my constantly protective eye. I went away to university and then spent many years living in other cities trying to make my way in the world. Our bond faded, but didn’t weaken.

Recently we’ve become very close again.

Sadly, our parents both passed away unexpectedly within a short period of time. My brother came to live with me and my husband, and we became his primary caregivers. I had always known this day would come, but it was never really discussed as it was a painful and seemingly fictitious conversation that I wanted to avoid.

The change was shocking and difficult for all of us. Unlike me, my husband didn’t have a lifetime to anticipate becoming the primary caregiver of a person with Down syndrome.

Sibling caregiving is complex and very different from the parent-child relationship. My brother is his own decision maker. I am responsible but without authority.

As siblings, you are close because of circumstance, not necessarily choice. You are honouring family values and unspoken parental wishes but you also have your own to consider. You walk the grey line of ethical decision making every day and in everything that you do.

I wonder continually: “Is this decision about him, or about me?” 

These conditions are ripe for the emergence of the ‘super sister.' I am a super sister. I am not the only one. There are lots of us out there. Super brothers, too. As a super sister I have taken on this caregiving role with my whole heart and then some. It comes from a place of deep love.

I have shifted a lot of energy that was focused on my own life to my brother’s life. I organize, plan, arrange, boss and frankly dictate so much of my brother’s life. I feel I have to do it this way because I am new to this job and I don’t know how else to do it. If I throw everything I have into it, everything will be all right, right?

I have been a super sister for one-and-a-half years now and I’m thinking that it’s time to retire my cape. Or at the very least find a spot for it in my closet.

Over the last year I’ve learned that even the mightiest of us super sisters can’t make pain go away, do everything right or be wholly responsible for creating a good life for my brother.

When you love someone deeply and for a lifetime you want them to be happy. I think this is especially true when that person has a disability.

I know that the pain my brother has dealt with in a lifetime has superseded my own. I have not faced discrimination and prejudice daily. I have been able to make my own choices, accumulate assets, enjoy good health, have many friends and do so many other things I take for granted. My brother has watched all of this and wondered why life has been different for him. When our parents died, super sister was all over his pain, trying to scrub it off his life because that is what seemed fair.

I could articulate my pain, rationalize my grief, and express my feelings in a way that brought me relief. But my brother could not.

So instead, I provided an endless roster of tonics: from tubs of ice cream to a new cat, from singing childhood songs to taking him on an exotic trip. On a daily basis he got a speech about what our mother and father would have wanted for him, how he shouldn’t be sad, how he has so many good things in his life. One day he told me: “Leave me alone.” The shine fell off my super sister costume that day. After that, I tried to take a back seat.

One day recently someone was rude to my brother on the city bus. Actually it was beyond rude, it was harassment. I overheard it, because we were on the phone together at the time.

I cried and was lost in despair about it. How can people say those things? Don’t they know what he’s been through?

My brother yelled back at the offending passenger: “You are not very nice and you should watch your mouth.”

Later on, when the drama had subsided, I realized that being super sister had been all about me. He doesn’t need super sister. He just needs me. And only sometimes. This letting go is something I’m trying to figure out, and I don’t think I’ve quite got it yet.

It’s hard to accept as a super sister that you can’t erase pain. It’s hard to accept that you have to back off and let people be, let them travel their own path, and allow them to get there in their own time.

Even the deepest and longest relationship in a lifetime has its limits.

Helen Ries is a writer, community activist, and professional consultant, and is also in the role of primary caregiver of her brother, a person with an intellectual disability. Helen’s work aims to build caring communities, better programs and smarter social policies for a more inclusive society. You can connect with Helen on Twitter @helenries  or through her website greatriverconsulting.caOr visit The Sibling Network, a Facebook group Helen created to provide information and support to caregiving brothers and sisters.

Thursday, June 9, 2016

Make room for dads

By Louise Kinross

In the world of children’s rehab, it’s often moms who become experts on their child's disability or injury, take their child to therapy and medical appointments and carry out interventions at home.

We even ascribe a culture to them, calling them warrior moms or Mama Bears.

But what role does this leave for dads?

A largely invisible one, according to a new fact sheet from the Parenting Matters research team at the Centre for Research on Children and Families at McGill University in Montreal.

Parenting Matters is studying what it means to parent a child with a disability like autism, Down syndrome or cerebral palsy.

“Integrate fathers and increase their visibility in clinical practice and research” is one of four main recommendations in Why Focus on Father-Inclusive Practice? The strategies come from 83 parents, clinicians, managers, researchers and policy-makers who participated at a 2014 symposium for the Canadian Network of Children and Youth Rehabilitation and the Canadian Family Advisory Network.

Other recommendations include:

-create flexible service hours, including evenings and weekends, and use technology like Skype to allow working fathers to participate in clinic visits


-focus on gathering information from all parents or caregivers, recognizing that each family is unique

-and develop fathers’ groups that involve dads in an activity and informally provide the opportunity for peer support.

Before drafting these ideas, participants heard about findings from a doctoral study on the role of dads raising children with disabilities by researcher and social worker Aline Bogossian. They also discussed the myth that “fathers aren’t interested in being involved in their child’s care plan.”

BLOOM: Why don't we see fathers more often in children’s rehab?

Aline Bogossian: One of the reasons dads are invisible is likely the way work is distributed between parents—with mothers being present with the child in clinic and fathers being out in the work world.

The other is that in research, when we talk about parenting, we’ve been talking about mothering. I was involved in a large, comprehensive, systematic review of literature on parenting kids with disabilities that spanned over 25 years, and studies that included dads in their samples were few and far between. That may be because it’s easier for researchers to access someone who is in clinic than to ask for the parent who’s not there.

There are also a lot of single-parent families where the fathers are hard to reach and we haven’t attempted to find them. So we don't hear dads' voices in research.


BLOOM: What are the downsides of not having fathers involved in their child's care?

Aline Bogossian: Fathers who are interested in being in their children’s lives are important to their children and must be supported. The kids want their dads. We can’t assume that dads are not interested just because we don’t see them in clinics.

There is also the downside of having mom doing all of the work, which means that the burden of all of that work remains on her. She becomes the expert and more and more, over time, is the one called upon. So that restricts the role the dad can take on.

BLOOM: Something I found challenging as the primary caregiver when my son was young was that I often had to convey diagnoses or difficult news to my husband, and that can create a lot of stress.

Aline Bogossian:
Yes, that’s huge. It’s different when a parent hears something from a clinician as opposed to a partner. The mother may not have, or remember, all of the information. She may not have the tools to answer the questions the father has. We all have different information-seeking styles and needs. Having mothers assume that burden could drive a wedge in the family.


The other thing that happens when dads aren’t at clinic visits is that they aren’t able to access support. I’m a clinical social worker and also the parent of a child who had a pretty serious chronic illness early on. I was the one in clinic getting all of the information, but I was also in clinic feeling supported. I was able to break down there and have someone to speak to, which is another thing a spouse who isn’t there misses.

BLOOM: I think the roles that parents play is a very sensitive topic. I think if you were to ask moms if they’d like their partner to be more involved, they’d say yes. But to be honest, in some ways, I think they might push back when asked to give up some of that control.


Aline Bogossian:
Yes, it can be tricky to give up those parts of yourself. While caregiving is very difficult work, it’s also extremely meaningful work. I think most important is not to make assumptions that one person can adequately speak for the experience of two.


BLOOM: What were the most important ideas you heard on better including dads?

Aline Bogossian: It came out strongly that the clinic should be an inviting place where dads can see themselves as welcome. Perhaps there are images or pictures that include dads with their kids, or by using language that is inclusive. So refer to mother and father, instead of parent.

Clinicians need to be more creative in their use of technology or in the way they organize important meetings where decisions have to be made, to ensure that both parents can participate. So perhaps Skype is used to make a space for dad, or maybe advance notice is given so that dad can attend.

We need to recognize that each family is unique.

BLOOM: Some of the recommendations are about changing clinic hours to evenings or weekends, so that parents who work can participate. Have you seen rehab centres make these kind of changes?


Aline Bogossian: I’ve been on the road with some of this work and I've seen some clinics create shifts so that some staff work in the morning till around 2 or 3, and others come in later and work until 9. And they offer these extended hours once or twice a week.

BLOOM: Your fact sheet says that dads report feeling invisible in children’s rehab. Does this lead them to feel inadequate, which then makes it less likely that they will get involved?

Aline Bogossian: Fathers speak to me about feeling invisible. They say ‘Even when I’m here, no one asks me anything.’ There are also fathers who are on a solitary, lonely journey. They feel their role is to support their partner, who is doing a lot of the work, and they don't want to burden her psychologically. They don’t feel there’s a space where they could ask for help or talk about their suffering.

BLOOM: I interviewed a single dad who is raising his daughter with disabilities. And he mentioned that when his daughter was hospitalized, if her mother visited, the doctors and nurses would start addressing all of their questions to her, and ignore him
.


Aline Bogossian: What you’re describing is a culture that says a dad can’t be a primary caregiver. These are popular stereotypes that we need to be aware of and change. That came up in our recommendations. If dad is in clinic or hospital with mom, do not direct all questions to mom. Ask both parents what they think.

BLOOM: This same dad had attended some support groups for parents of children with disabilities and found he was the only dad there and didn’t feel very comfortable.


Aline Bogossian:
We recommend peer support for dads, but not in the traditional ways where mothers get together and talk. The idea is to get dads together to do an activity. For example, there’s a group for bereaved men that walks on Mount Royal here in Montreal. Apparently they start talking about sports or whatever, and then they eventually get into a space where they feel supported and conversations about what they’re going through naturally emerge.


Aline Bogossian is a social worker, a researcher coordinator at the Centre for Research on Children and Families, and a doctoral student in the School of Social Work at McGill University.