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Julia knows firsthand that every family is unique

Meet Julia Hanigsberg, the new president and CEO of Holland Bloorview (in photo with daughter Rachel). Julia comes to us from Ryerson University, where she was vice-president of administration and finance. Here she tells us more about her own family's experience with disability and how she's learning about the hospital "from the ground up."

BLOOM: What does your experience as a parent of a child with disability add to your role here?

Julia Hanigsberg: I think it gives me a perspective on the complexity of the lives of our clients and families and a real appreciation of how every child—and every family circumstance—is unique. I think that’s even more the case in childhood disability than in other medical settings. Our client population has so many different vulnerabilities and exceptionalities and I have a real sense of that and of what families go through in trying to achieve the best opportunities for their kids.

BLOOM: Can you tell us a bit about your daughter?

Julia Hanigsberg: Rachel is 18 and we’ve been through a journey of diagnoses with her. She was born prematurely at 29 weeks and has global developmental delay. Then 15 years later there was a new diagnosis of autism. She also has some associated mental health issues like anxiety. I know that the diagnostic world for our kids is often longer and not so straightforward. There are layers, and things emerge over time as our children change. The world in which we operate is not a ‘one-size-fits-all’ world.

Rachel is in high school and she’s a very typical teenager who loves YouTube and her music—very loud music—and her privacy and space and wants to be independent. Her school is a great fit and she’s very enthusiastic about starting co-op because she’s excited about the world of work. She loves to shop, so she thinks working in stores will be lots of fun.

BLOOM: What’s been the greatest challenge parenting Rachel?

Julia Hanigsberg: Two things. One is navigating the system and knowing what to do when. Knowing that you’ve explored all the possibilities, you haven’t left any stones unturned. It’s a two-edged sword because when they’re little, and even now, you don’t always know what the possibilities are. The nice thing about having a teenager is that they have their own ideas about what they want to do.

The other challenge is moving into the adult system and that transition point is a very serious concern. Rachel’s 18 now so we are right in the heart of that—thinking of what the long-term future holds. School will end and that will be an enormous point of transition for her. As long as your kid is in school you know that they’re well taken care of for a good chunk of the day. The path for my daughter after school is less clear.

I’m conscious of the fact that my experience as a parent is just one parent’s experience. For example, our experience is very different from a parent who has a child with an acquired brain injury—where in a moment everything changes for their typically developing child. I gave birth at 29 weeks and we had a long time to move into the world we were in.

I’m also very well aware of the privileges I have. English is my first language and I don’t have a job where taking half a day off for my daughter’s medical appointment isn’t an option.

BLOOM: Can you tell us about your background?

Julia Hanigsberg: I’m a lawyer by background. I think that’s a fantastic educational background for being a problem solver. You come out with a structured way of thinking about problems. Very little of my career has been spent as a traditional lawyer. I spent 10 years in the provincial government, mostly with the Ministry of the Attorney General and in the Cabinet Office doing policy and legislation-focused work. I was chief of staff to a cabinet minister so I have a broad view of the workings of government from a civil service, policy and political perspective.

Then I went to Ryerson and spent five years as the general counsel and secretary of the board and five years as vice-president of administration and finance. It gave me time to understand how big organizations work and how you make difficult decisions within the context of large organizations. One thing I took from my time as a trustee of the board at Holland Bloorview and applied at Ryerson was related to client- and family-centred care. Family leaders here are involved whenever there’s a big procurement decision. At Ryerson, we never would have involved students in that kind of decision. So when Ryerson put out a request for proposal for a new food management company I suggested we have two students on the selection committee. It was fantastic.

BLOOM: Why do you believe that social media is important in your role?

Julia Hanigsberg: Two reasons. One is giving people an opportunity to get to know me as Julia and as the CEO of Holland Bloorview and demystifying the role. People who follow me on social media and talk to me in the halls will see there isn’t a big disconnect. As much as I’m trying to meet every person, it’s hard to do that, so I want to find other ways to expand how I connect with the team that works here and with clients and families. The other is to be part of the ecosystem of sharing of quality Holland Bloorview information that I can disseminate out to the world. My experience with social media is that you frequently make connections online that result in incredibly valuable personal and professional connections. There is a richness there that not everyone appreciates.

BLOOM: Research shows that parents of kids with disabilities are at greater risk of depression and anxiety and physical problems. What strategies have you used in your own life to take care of yourself?

Julia Hanigsberg: It’s a struggle that every parent has, period, and our parents have much more complex families. The other area we read about is resilience—in our children but also in ourselves. Building up capacity for resilience is like building up a muscle. I think that’s quite inspiring and something to be really thoughtful about.

A lot of what we do personally is the normal stuff—eating well and exercise—because you know you’re going to have to absorb and do more. We’re very lucky in that we have a lot of family around us. Respite is so important. We do a lot of that here at Holland Bloorview for our clients and families. In my family, we have nephews and nieces and grandparents who are really involved. So my husband and I can go away for a weekend, pretty infrequently, but we can do that. The support of family also means we can spend time with our other kids. I have 14-year-old twins. So it’s building resilience for the whole family.

BLOOM: How can the hospital best support parents so they feel able to advocate for their child?

Julia Hanigsberg: I’ve been really impressed with our Family Leadership Program. I think the hospital’s investment in the leadership of families is extraordinary and they can take that into the rest of their lives. When I joined the board of trustees the family advisory used to meet in the boardroom but now they meet in the conference centre because they can’t fit in the boardroom. We’ve trained over 100 family leaders. There are also more informal ways like our Parent Talk groups where parents can create networks that help them learn.

BLOOM: What would you like our parents to know about your plans for the hospital?

Julia Hanigsberg: It’s too early to talk about plans for the hospital. Right now I’m learning and listening and focusing on having experiences as the way I learn. People have been incredibly generous in sharing clients and families with me, encouraging me to participate in clinical team meetings and huddles, to help me better understand how the hospital works from the perspective of families and our extraordinary team of staff. My orientation is to learn the place from the ground up, not from sitting in this office.

BLOOM: What do you see as the hospital’s greatest challenge? Greatest strength?

Julia Hanigsberg: I don’t think it would surprise anyone to know we’re challenged financially, and, but for money, there’s more we would do. Space is an emerging challenge. We’re not there yet, but at a certain point we’ll want to do things and be limited by the lack of space. I think the hospital has made smart, economical and efficient use of its resources.

Everyone in the place has huge ambition and that’s an enormous strength. Everywhere I go, people want to do more and better and I think my role is to find the path that allows them to achieve their ambitions for Holland Bloorview. I don’t need to set out the ambitions. Talk to anyone who works here and they’re excited about what they do and have a huge vision for what that could be.

For a window into Julia's first weeks at the hospital follow her on her blog or on Twitter @Hanigsberg.

'There is something magical about this place'

By Louise Kinross

Stephen Dustan is a 23-year-old rehab services student doing a placement at Holland Bloorview. He works with life-skills coach Sarah Keenan, meeting youth in the community to help them set independence goals. Stephen knows our hospital intimately. As a child with cerebral palsy he attended our integrated kindergarten program. Since then he’s been an inpatient and outpatient; a Spiral Garden camper and volunteer; a high-school co-op student in our integrated kindergarten (working with his old teacher Paul Alcamo); and he now works part-time as a recreation assistant with our inpatients. One of our family leaders suggested we interview him.

BLOOM: Why did your parents choose our kindergarten for you?

Stephen Dustan: I think what attracted them most was the fact that I would have therapy and be in a place that was equipped to handle my needs. They loved the idea of it being integrated with community kids because that gave you such important skills of being able to articulate your disability to able-bodied kids, which is something you’re going to do lifelong as a person with a disability.

BLOOM: What do you remember about our school?

Stephen Dustan: I remember having my disability explained in a way that I understood and in a way that I could explain it to other kids. My 'go-to' is that my brain got cut-off from oxygen at birth, damaging the way my muscles communicate to my brain. So my muscles are tighter and don’t grow properly like normal kids’ muscles do.

BLOOM: Did that explanation satisfy most kids?

Stephen Dustan: They often gave me a blank stare. It kind of went over their head but it kind of sunk in. I found my willingness to explain it beneficial. Kids are just curious, they’re not mean by nature, and if you provide them with an answer, they usually were pretty receptive and understanding.

BLOOM: What was it like to move to your local school for Grade 2?

Stephen Dustan: The moments when I would feel different from the class were when everyone was getting ready for recess, especially in winter, and it would take me longer, so I’d have less time outside to play. Getting an educational assistant in place for me was difficult and took some time. But I was good at self-advocacy and stating my needs. So I asked whether I could get ready five minutes earlier than the class. My disability was never an issue for me socially. I have an older sister and I had the support of her and her friends so the kids in my class gave me respect. I always had friends to confide in and rally around me. It wasn’t until Grade 8 that I experienced some bullying.

BLOOM: What happened in Grade 8?

Stephen Dustan: I did my last year of elementary school in a new school that opened in my neighbourhood, so I was starting again without friends. I fell into a group of friends that were kind of mean to each other and very political. I did experience some bullying and I definitely can relate to the isolation that that causes: the feeling of not wanting to go to school; hearing whispering and thinking it’s always about you. I told my friends and parents but I never got the authorities involved. I waited it out until high school and it got a whole ton better then. I remember on the first day of high school I was really nervous and I came through the doors on my scooter and there were three of my old friends from elementary school and instantly I knew that it was going to be fun.

BLOOM: What is your university program like?

Stephen Dustan: I found this York/Seneca rehab program where you get your BA in psychology, which I now have, and then a certificate in rehab services. It’s a general program that covers all aspects of rehab. What I like most is that I had the opportunity for field placement.

BLOOM: What did you do as a placement?

Stephen Dustan: Two years ago I worked with The Centre for Dreams, which is a day program for adults with developmental disabilities in Markham. I worked with clients on social goals, life skills, self-care and vocational skills. I had never worked with clients with developmental disability and it was a really great experience. I got a new appreciation for how honest people with developmental disability can be, how kind they can be, how open hearted they can be. It was a privilege to work with the clients and the staff.

BLOOM: What are you doing in your placement here?

Stephen Dustan: I’m in therapeutic recreation and life skills working in the community with Sarah Keenan. I’m learning about the life skills process, the different ranges of goals that clients set and how to achieve these goals. It’s very solution-focused.

BLOOM: Have you found anything about the work surprising?

Stephen Dustan: I knew I would like it, but the amount I like it surprised me. Life-skills coaching is definitely something I could see myself doing and having this experience with Sarah helps me in my job as a casual staff on the inpatient unit being a recreation assistant. I can apply what I’m learning to both situations.

BLOOM: What is your favourite part of the work placement?

Stephen Dustan: I love the element of counselling and coaching and being a part of someone’s development. My future goal is to pursue a master’s in social work and get into counselling.

BLOOM: Does it seem unusual to you that you spent so much time here growing up and now work here?

Stephen Dustan: Holland Bloorview was such an integrated part of my life. I never had any negative feelings around this place. For example, I didn’t connect it to the more traumatic elements of my recovery after my surgeries when I was an inpatient here. It was physically painful to do rehab, but it wasn’t emotionally painful or painful in a way that would make me not want to come back.

BLOOM: How would you describe Holland Bloorview?

Stephen Dustan: It’s incredibly unique and alive. For me it’s been a place of recovery and opportunity and it still is. There is something magical about this place, especially the Spiral Garden program. I went there when I was little and I later volunteered there. They’re phenomenal at putting this element of imagination, of magic, into a place that traditionally shouldn’t have any. From my time working at Spiral Garden and on the inpatient unit in general I’ve come to see the amount of work and organization that go into creating that recreation hour with the clients gardening. How many people pour their heart into what they’re doing, the amount of organization and heart and energy it takes.

BLOOM: Has your view on disability changed over the years?

Stephen Dustan: When I was a kid I always had this idea that you’re not disabled, you can do anything a normal kid can do it will just be a bit more challenging or you’ll do it differently. That helped me tremendously as a kid, but now as an adult I can recognize that it’s not a matter of me not being disabled. Disability can be an identity, a social identity. So much of my strength has come from 'being disabled' that I no longer see it as a weakness or something you have to distance yourself from or deny. It’s something you can accept and in some ways celebrate.

BLOOM: What are some strengths that have come from your disability?

Stephen Dustan: I think there’s a depth, an internal space that I have to hold things, to connect with people, to understand people’s struggles and emotions. Because I’ve been placed in intense situations that most people don’t experience, I’ve got insight into where strength and hope come from when it’s really dark. I know that that light is inside everyone and you have to find it and if you can relate to it in an authentic and real way, you can make that light brighter in yourself and in someone else.

BLOOM: So disability isn't something you need to 'overcome?'

Stephen Dustan: No. I’ve done a few disability studies courses that opened my eyes to the idea that disability is really a matter of social barrier and not a matter of something being biologically wrong with a person. It’s not about overcoming tragedy. It’s more about transforming tragedy into triumph, but not in the sense that you move past it or get over it. You accept the disability with such wholeheartedness that it no longer is something that impedes you on your path.

BLOOM: What was it like to come back as a placement student in the integrated kindergarten you had gone to as a young child?

Stephen Dustan: So many memories that were foggy came flooding back. Paul is exactly the same in every way I remember him. He still gets the most stoked about dinosaurs of anyone I know. I remember as a student I knew every dinosaur’s name and now I can see why I was so passionate about that topic—because Paul was.

BLOOM: What impact do you think you had on the kindergarten students when you came back?

Stephen Dustan: I hope they can see themselves in me and we have that connection. It’s the idea of 'Hey, I made it, I’m doing well and you can too.' I hope they take from my example that they too can be a part of this world in a real and authentic and powerful way. I try to remind myself that I’m a role model and to hold myself accountable to that.

Here's a photo of Stephen as a co-op student in the integrated kindergarten. By Paul Alcamo.

The balancing act: Children's rehab is about truth and hope

Dr. Anne Kawamura is a developmental pediatrician in Holland Bloorview’s child development program, working with children with cerebral palsy, autism and other developmental delays. She was hired 10 years ago after completing her fellowship in developmental pediatrics here. In addition to her clinical work, Anne directs the University of Toronto program for pediatricians who train for two years to become specialists in working with children with disabilities. She has three children of her own.

BLOOM: What led you to working in children’s rehab?

Anne Kawamura: A lot of it stems from the fact that when I was in medical school I had a chance to work with children with autism. As part of a research project with Dr. Wendy Roberts I went into the community three days a week as a volunteer to do intensive behavioural intervention with two young boys. It was really hard and I didn’t know what I was doing, though I had some basic training.

The greatest part was just having the connection with both of these kids and to see that even though things were really challenging for them and their families, that you can build a relationship with these children. That was very meaningful for me. People often misunderstand that. You can really get to know a child with autism and they can get to know you in their own way.

I also felt firsthand some of the judgment that families experience. One of the boys banged his head and once he was so upset he gave himself a black eye. I took him to the park and people looked at me, with a child with an injury, as if he’d been abused. I got a sense of how it felt to be in the parent’s shoes.

BLOOM: What is the most challenging part of your clinical work?

Anne Kawamura: I think the hardest days are when families ask me really hard questions, like ‘will my child walk or talk?’ and I know the answer is that the child may never walk or talk. They want something and I can’t give it to them. It could be certainty or a guarantee, or even that they want more therapy, and we don’t offer that level of therapy.

BLOOM: When a parent has a question about a child’s abilities in the future, how do you address that in a helpful way?

Anne Kawamura: You have to balance being truthful about what you know about the condition with hope, and leaving room for change. There have been times when I’ve been really surprised to see what the outcome is. When I was first working here I was on the brain injury team. I’ve seen some really dramatic changes there that I wouldn’t ever have been able to predict. So it’s important to leave the door open.

BLOOM: When I speak with medical students they often ask how they can convey difficult news to a parent in a way that won’t be upsetting, as if there’s a ‘right’ way of doing it.

Anne Kawamura: You can’t follow an algorithm. I see that with our fellows who want to know the right way to approach this.

One of the most important things we need to teach is that it’s a conversation that goes back and forth. You never know what will come back from the parent, so you need a great deal of flexibility.

There’s no perfect way of giving a diagnosis, there is not. And you can make mistakes, you can make a misstep, but the idea is that you can recover from that. You can back up and redirect and reestablish a good connection with the family.

BLOOM: What advice do you give fellows when giving a diagnosis?

Anne Kawamura: I try to teach them to find the strengths in every child, and to focus on those strengths. But they have to truly believe the child has strengths, and to help the parents see those strengths if they don’t already. When you interact directly with a child during an assessment you get a sense of what they’re doing really well, and how those things may help them in moving forward in an intervention or in their day to day life. Focusing on strengths is important in providing a window of hope.

BLOOM: I think it must be difficult for fellows to learn that what’s helpful to one parent in conveying a diagnosis may not be helpful to another, because each parent is so unique.

Anne Kawamura: My gut feeling as a health professional is that when someone is upset or suffering I want to fix it. And some of the most useful feedback is that we don’t need to fix it, we may not be able to offer parents something that changes how they’re feeling. We just need to be there. To listen. To acknowledge how challenging it is. To be an ear. The most important thing is that it’s okay to take the time to really hear where the parents are at, to give them an outlet to express how they’re feeling.

Something exciting we’re doing is running a new simulation program so fellows can practise giving a diagnosis with a standardized patient. We have a family leader who has a child with autism who’s been part of building these practice scenarios and giving feedback to fellows. It’s been amazing having this parent’s perspective.

She can tell us how things felt for her as a parent, and how we could have done something differently. I don’t have a child with autism, she does, and having that perspective is really important. The other important thing is practice and learning how to navigate situations.

Part of why I enjoy what I’m doing is that it’s always a challenge and there’s always more to learn. I’m always thinking back to what I could have done differently to make things easier or better. We’ve done two sessions of simulation so far but we hope to be able to offer it to our fellows regularly during their two years of training.

BLOOM: Have your views about disability changed since you began 10 years ago?

Anne Kawamura: When I first started out I wanted kids to get as much therapy as possible. We all have that notion that more therapy is better. Over the years, through talking with colleagues and seeing a lot of kids, I see that there are other equally important things in life, in terms of going out with your kids and playing, having fun with your kids.

I try to talk to families more about seeing their whole child, not just focusing on one thing, like walking, but to focus on the other aspects of their child’s life where they’re doing well and where they also need support. I try to help them focus on all aspects of their child’s development.

BLOOM: Have you seen any changes in children’s rehab?

Anne Kawamura: I think there’s more emphasis on participation, even in the research realm of things. Before, we were focused on ‘what’s wrong,’ for example, treating the stiffness in the muscle. Now we’re still treating the stiffness in the muscle, but we’re more interested in how treating it influences what the child can do, how they participate in an activity and their quality of life.

BLOOM: I assume your job is stressful because supporting families takes time, but your time is limited?

Anne Kawamura: Peggy Curtis is the nurse I work with and we work really closely together. We have a schedule and demands to get our wait list down, but we try to make it work each day, one step at a time. We never know when a child and family will need more time, and we want to be flexible to meet the needs of the families coming that day. So if someone needs more time, we figure out a way to make it work, even if it means bringing them back for another visit.

BLOOM: What are your hopes for the future?

Anne Kawamura: Right now in addition to my clinical work I’m doing a lot of education overseeing our program for pediatricians who are training to become developmental pediatricians. I’m also doing a master’s in Health Professions Education, which I do long distance through the University of Illinois at Chicago.

I love what I do and I don’t ever want to leave the clinical side. I like working with families and the kids I get to see and follow up over time. To see them growing, changing and maturing is the part I enjoy. And I love teaching too.

BLOOM: If you could give yourself advice when you were starting out, what would you say?

Anne Kawamura: I think having a good mentor in the field is important, in terms of balancing workload and the rest of your life.

There are stressful cases where you feel you don’t know how to help or how to resolve a situation and having someone to talk to is really important. Earlier on I had mentors like Darcy Fehlings or Golda Milo-Manson. And now I could still knock on their doors, but I have other people that cross disciplines, like Peggy and the other colleagues I work with.

You need many mentors and they will be different people at different times.

A children's rehab doc says goodbye at age 18

In children's rehab, unlike in acute-care, kids and families develop long-term relationships with clinicians. Dr. Golda Milo-Manson, a developmental pediatrician at Holland Bloorview, talks about what it's like to work with a child from the toddler years through age 18, and the emotions she experiences when she has to say goodbye. Thanks Golda!

'Dr. Darcy' unites research and frontline care

Dr. Darcy Fehlings is a senior clinician-scientist who heads Holland Bloorview’s child development program and University of Toronto’s division of developmental pediatrics, the program that trains doctors who specialize in working with children with disabilities.

Darcy has conducted groundbreaking research in the use of Botox to reduce muscle tightness in children with cerebral palsy and is the incoming president of the American Academy of Cerebral Palsy and Developmental Medicine.

One of her latest studies looks at how stationary exercise bikes and a virtual video game can motivate kids with cerebral palsy to exercise at home while having fun and making friends (see photo above). Darcy’s worked at Holland Bloorview for 25 years.

BLOOM: Why did you choose children’s rehab as a field?

Darcy Fehlings: When I was finishing medical school I was torn between whether I should go into pediatrics or psychiatry. I wanted to work with children but I liked not only the health issues, but the psychosocial aspects. I was accepted into both, but I wanted to ensure I had a strong medical training and I really liked the idea of using a holistic approach to wellness when working with children and their families. So after I did my pediatrics training I applied and got into the developmental pediatrics program.

BLOOM: Has your thinking about disability changed over the years?

Darcy Fehlings: To me the disability has become more invisible and I see the individual rather than the disability first.

BLOOM: Have you had any ‘aha’ moments?

Darcy Fehlings: One was related to my kids. I was giving a talk in the evening for parents of children with Duchenne muscular dystrophy and my husband was away, so I had to bring my three kids with me. My oldest daughter was in Grade 6 and old enough to integrate into the inpatient recreational program. This was her first exposure to really interacting with kids with disabilities and when she came out she said: ‘Mom! That was eye-opening. They’re just like any other kid.’ That was an aha-moment for me in terms of the power of integration.

BLOOM: What are some of the challenging things about this field?

Darcy Fehlings: I have to say that I absolutely love what I do. I love it. I know that some children are struggling and some families are struggling, but as a health-care professional I really value being in a position where I can hopefully intervene or help the child and family. I have a lot of empathy, but it isn’t a negative emotion. I feel like I may have a suggested solution to help the challenging situation so that a potential negative can be flipped into a positive.

There are times when, for multiple reasons, there hasn’t been that positive effect. But it’s just my personality that I’m very accepting of what the children and families bring to the table. Even if they’re not as compliant with what I’m suggesting, I don’t carry a negative feeling. I understand that they have a million things they’re trying to do, and deal with, at the same time.

Another potential challenge is keeping up with the pace of scientific discovery, particularly at a molecular or basic level. However, this can also be exciting. You can put a childhood disability lens on these discoveries and see which ones might eventually make an impact clinically for a child.

BLOOM: If you could tell parents one thing, what would it be?

Darcy Fehlings: I think families of children with cerebral palsy often get stuck in this concept of ‘I have to do these intense therapy routines’ with my child. I wish that I could help families move towards appreciating how important it is for their child to participate in fun activities and focus on wellness rather than just focusing on repetitive motor drills to try to obtain function. I think focusing on socialization and leisure is super important. Often families say ‘I wish I’d figured that out earlier.’

BLOOM: If you could give yourself advice when you first started, what would it be?

Darcy Fehlings: I did give myself advice and it was: “Push yourself really hard. Try really hard. Learn the evidence, so you can be as helpful as possible. Take it really seriously because it’s a very serious responsibility.”

BLOOM: How do you do that and balance your own life?

Darcy Fehlings: When my children were younger I worked a four-day week for many years and that was really helpful in having a work-life balance. Right now, quoting Sheryl Sandberg, I say ‘yes’ to choosing both: Leaning in to life and leaning in to work.

BLOOM: If there was something you could change about our current health system for children with disabilities, what would it be?

Darcy Fehlings: I think families would appreciate it if there was more coordination and connection between the various service and health-care providers. I’d also like Holland Bloorview to continue to develop our focus on participation and wellness. We’re leading the way in this area but I’d like to see us develop it in an even bigger way.

I’d love for our practices to become even more evidence-informed, so we’re standardizing care pathways so that not only can we do a great job at Holland Bloorview, but if another clinician is trying to provide a similar service elsewhere, they can access that information. We need to do a better job of creating evidence around the service and care we provide.

Finally, I’d like to do a better job of empowering families with good information.

BLOOM: How can we do that?

Darcy Fehlings: We need to develop an information hub that is providing relevant, understandable information to parents. It’s time intensive to create a system like this and keep it updated. We have to work together as a collective group of clinicians around the world to pull and share information so we don’t each have to create it.

BLOOM: How has your practice changed over the years?

Darcy Fehlings: I’ve always been a bit of a softy in terms of wanting to have a holistic approach to the child within the family and the family within the community. I think as I’ve progressed I’ve developed efficiencies in assessments so that it doesn’t take me four hours to have that holistic approach. I think I’m efficient in my interactions with families and can quickly get to a point where they feel like I’m being helpful.

BLOOM: How do you deliver hard news to parents?

Darcy Fehlings: I try to deal with it head on in a manner that hopefully they can hear and listen to. I try to present the information so that they’re the ones moving the decisions forward, but that I’ve presented it in a way that includes some hope, so that they don’t close off and stop listening.

BLOOM: What are your hopes for research?

Darcy Fehlings: I’m involved in two translational cerebral palsy neuroscience networks and I hope that we can make a discovery of a treatment that would help the neurologic condition of cerebral palsy. For example, we’re trying to explore how constraint therapy might stimulate stem cells that are already in the brain.

My other dream is to get our ‘exergaming’ project into children’s homes. We’d like to see research interventions move into clinical applications like this. Exergaming is where children with cerebral palsy ride a stationary bike to power a virtual game they play with each other. Youth can pedal and play together, have fun, boost their cardio fitness and decrease their sedentary behaviour.

BLOOM: What are your goals clinically?

Darcy Fehlings: I’m going to put a lot of energy into helping to develop evidence-informed pathways so that all clinicians can strive to be great. You take all of the available evidence and pair that with expert opinion to develop flow pathways for care. These are one-page pathways so clinicians who are really busy don’t have to read 40 articles—it’s been synthesized for them.

BLOOM: As a parent I would have loved to have a coach who follows me over time, to help me stay encouraged and on top of the many things I’m working on with my child. What do you think of my coach idea?

Darcy Fehlings: I really believe in continuity of care. You meet a child and family at one time, but you’re going to become a much better clinician if you follow that child over time. If you miss something you will learn that you missed it, and that will allow you to get better. It’s very important to families when they see the same team over time and can develop a relationship with them. This is where the coach idea could fit in as a lifespan perspective is very important. Some of that coaching takes place with our nurses.

BLOOM: What are you most proud of in your work here?

Darcy Fehlings: When I came here we didn’t have a ‘care-by-parent’ unit where the parent could stay in the room with the child. And we didn’t have a day program. We were a hospital. I’d like to think that I had a role in pushing those things forward 25 years ago. I really love the work I did in the neuromuscular program when it was transferred here from SickKids. I was leading this great team and we had to take it from an orthopedically-focused scoliosis management program to a holistic program.

Overall I’m proud of my efforts to integrate research and practice together to drive excellence in care.

Dear Compassion

I just returned from a moving workshop at Mount Sinai Hospital called Postcards from the Edge: Addressing Compassion Fatigue in Note Form.

It was given by Ronna Bloom, the poet in residence at Mount Sinai.

The focus was compassion fatigue, the natural stress that arises in health workers caring for, and wanting to help, someone who is suffering or traumatized.

Ronna described it as "the cost of caring for others in emotional pain, exposure to traumatic events or hearing clients talking about their trauma, and witnessing suffering without being able to improve the circumstances."

Symptoms include re-experiencing patient trauma; avoiding reminders of it; and emotional numbing.

She described empathy as the cornerstone of good care: "Opening our hearts and minds to patients." But it is this openness that also makes health workers vulnerable to compassion fatigue.

Ronna said that writing poems can be a way for professionals to "support, express, or dump what they are carrying, or to cradle or hold it." There is something about the process of writing our experience down on paper that may allow us to carry it in a different way.

This struck me as relevant to parent caregivers of children with disabilities.

Ronna had us do some writing prompts, but began by giving us these five brilliant rules:

1. Don't think
2. Keep your hand moving
3. Don't censor
4. You are free to write the worst crap possible
5. You don't have to share

I think the most important are number 1—don't think—and number 3—don't censor. Of course knowing that you don't have to share what you write frees you up to write in this way.

One of the exercises involved writing "towards someone or something, a concept."

It could be "Dear Next Patient" or "An Open Letter to Compassion." This was an opportunity to "respond to our world without sharing."

I found this to be very therapeutic. By focusing on feeling (and silencing critical thought) I put something down that helped me see more clearly how I felt.

Some participants shared their writing and the emotion felt by these health professionals as they described their caring work was palpable. "A sense of helplessness is at the core of compassion fatigue," noted one participant.

I think these techniques can be useful for parents and hope to learn more about them.

In the meantime, I'll remember that if I feel heavy with emotion or angst, writing freely about it can release it from where it's being tightly held within my body, and allow me to see it in a new way.

This workshop was offered through the Health, Arts & Humanities program at the University of Toronto.

How stories humanize us

Historically BLOOM has been the voice of parents raising children with disabilities.

But there’s value—to parents and professionals—when clinicians share stories about the emotional side of their work in children’s rehab.

My “aha” moment came when listening to an occupational therapist describe how anxiety-provoking it was for her to tell parents that their child needed to be referred for a wheelchair. Often, the parents still held tight to the hope that their child would walk.

The therapist spoke about how she had to fight putting off these conversations, and how she wished there was something she could do or say to lessen the emotional pain she knew the parents would experience. She had to approach these talks with a great deal of humility, knowing that she didn't have the "magic bullet" the parent sought.

While listening to this therapist, I suddenly saw myself on the other side of the fence as the parent receiving the news that my child would never do something—in our case, speak.

And knew how I hadn’t been able to hear the therapist, how I had shut down inside. On the outside I’d be saying “Yes, I understand,” but on the inside I was dismissing this therapist, scratching her off our trusted “team,” and probably even plotting our next speech intervention. I never thought about how it felt to be the professional in these conversations. If asked, I would have said: “I don’t care how the professional feels, because this isn’t about the professional, it’s about my son.”

But listening to this therapist, I felt tremendous empathy for her.

I could see that we experienced some of the same emotions and I saw this as a bridge to our experience.

I also felt a knot of guilt in my chest: ‘I wouldn’t want her to have to deal with a “bull-dog” parent like me,’ I thought, and this revelation surprised me.

We talk a lot in family-centred care about partnership between parents and health professionals. But I hadn’t been a “partner” in planning my son’s care when I held rigidly to one speech outcome for my son, dismissing any contrary evidence I was presented with.

Hearing a professional speak about the emotional side of her work brought home the human impact of children’s rehab on professionals and made me care about it.

If we’re going to humanize health-care, it’s not just our children who have to be seen as full human beings. It’s the people who work with our children, too.

Stories can level the playing field between parents and clinicians.

Instead of positioning the professional as the all-knowing, invulnerable partner in the clinical relationship, and the parent as the helpless, needy one, desperate for answers, candid stories reveal the strengths and limits of us both. They reveal our common humanity.

One of our goals at BLOOM is to bring you more stories from clinicians, researchers and students.

Using the search button on the right, check out How one boy’s life changed mine; 5 things I wish parents knew and Let’s rethink ‘normal’ in children’s rehab.

Happy weekend!

Mama and Dad

Julia knows firsthand that every family is unique

'There is something magical about this place'

The balancing act: Children's rehab is about truth and hope

A children's rehab doc says goodbye at age 18

'Dr. Darcy' unites research and frontline care

Dear Compassion

How stories humanize us

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