A cousin's memory fuels this Kenyan trainee

By Louise Kinross

Susan Wamithi grew up in Nairobi, Kenya. But her medical studies have taken her from Alabama to Grenada to England to Nairobi to Toronto. She’s now in her second year of a developmental pediatrics fellowship at Holland Bloorview. She plans to take what she learns back to Nairobi to develop the first program in developmental pediatrics—caring for children with a variety of physical and developmental disabilities—at Aga Khan University Hospital. 

BLOOM: What drew you into developmental pediatrics?

Susan Wamithi: I grew up with a cousin who had cerebral palsy. She passed away when she was 12. She had spastic quadriplegia and my aunt used to bring her over and carry her up the stairs into our house. She was always smiling and she had really nice hair, so I would braid her hair. Now that I’m learning more about pain in cerebral palsy, I wonder ‘When was she in pain?’ And how did my aunt manoeuvre the transport system, because she didn’t have a wheelchair? We weren’t made to feel she was different from us, and we accepted her disability.

I also had an interest in medicine. When I was eight I was in a road traffic accident and I was hospitalized. I was curious and I loved science, and there was a nurse who explained everything she was doing and that got me interested.

BLOOM: How did you decide to work with children?

Susan Wamithi: I had a neurology professor who motivated me to pursue a career in developmental pediatrics. He talked about the great work that parents in Kenya were doing for their kids with disabilities. Mothers rallied together to have walks where they raised funds for different therapies. Our system is both private and public, but you still have to pay a certain amount in the public system. When I expressed interest in developmental pediatrics, I learned that the dean of medicine at Aga Khan is a Canadian. I met with him and he told me about this program.

BLOOM: Why did you choose Holland Bloorview?

Susan Wamithi: The fact that it’s family-centred. When I looked at the website, it’s seeing the children with their families and seeing the type of support families get. Seeing the funding families get for adapted equipment. That tied in with what happened with my cousin. I kept wondering whether those resources weren’t available to my aunt. I’ve never asked. I wanted to see what those supports looked like. I’m always thinking about how I can take what I’m learning here back home to help our families, where we don’t have enough resources.

BLOOM: Are there many developmental pediatricians in Kenya?

Susan Wamithi: There are only two that I know of. I’m being sponsored by Aga Khan University.

BLOOM: What is a typical day like here?

Susan Wamithi: We’re on blocks of rotations in different clinics. So I may be in the neuromotor or child development clinics.

BLOOM: Do you meet with the families on your own?

Susan Wamithi: Yes, we see clients on our own and then we go back with the staff and present our work. It’s a training program, so if you forgot to ask something, the staff will teach you. You have objectives and you’re taught how to manage different disabilities and the resources that are available here and elsewhere. We provide very individualized care based on a child’s needs.

BLOOM: What is most challenging?

Susan Wamithi: Delivering bad news to parents. I’m a parent myself, and you can’t imagine the type of grief that they go through. I want to be able to give some hope, and find ways to support families so they continue to see their child’s strengths. Some parents will cry the whole time, and others will ask questions and accept that ‘This is it, what’s next?’ If we’re using an interpreter, I always hope that what I’m saying is being interpreted in a sensitive manner. You kind of share their grief. What’s been hard for me is coming from my work as a general pediatrician, where a child has a sore throat, I give them an antibiotic and they come back and say ‘My throat is fine.’ There’s nothing I’m going to write here that’s going to change what happened to the brain in a child I see, and the consequences we’re seeing. That’s emotionally draining.

BLOOM: Do you do anything that helps you cope?

Susan Wamithi: I’m spiritual. I had to come to terms with the fact that I don’t know why this happened to this child, but at least there’s some support I can give them. I ask God to give me the wisdom to know what words to say to this parent. I feel this is such a pivotal point for them, and I don’t want them to change how they see their child. My biggest fear is that the parent will just see what the child can’t do. Or that the parent won’t believe what I’m saying about the diagnosis, and the child won’t be linked up with the right resources. I have to be creative to find a way to take a parent through this journey. From the first time we sit down, I need to gain their trust, and make them see I’m on their side as an advocate for their child. When I give the diagnosis, it’s not me against them, but us helping the child.

BLOOM: What do you love about your work?

Susan Wamithi: I love being able to support families to see their children differently. That’s what I’m passionate about. That comes from my background with my aunt, who was always cheerful. She’d come and bake with us and her daughter was right there and included. I love seeing children light up when I ask them what they’re doing for the summer, because we’re allowing them to be children and go to camps and enjoy their life. I love finding out about resources for families.

BLOOM: Have your thoughts on disability changed since you came here?

Susan Wamithi: Back home I was a pediatrician. So if I suspected a child had autism, I would refer them to a clinic, but I never knew what resources were available in the community. What I’ve learned here is how to support families in finding different funding agencies. In Kenya, we have organizations that raise funds for cerebral palsy and autism. When I go back, I want to work with these organizations to make sure newly-diagnosed patients are connected with them.

BLOOM: If you could change one thing about the health system, what would it be?

Susan Wamithi: The waiting times. Imagine the parent whose pediatrician says ‘I think your child has autism,’ and then you have to wait six months to get a confirmation from me. I worry about how that parent is sleeping at night, and how it impacts how they interact with their child. Do they become depressed?

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When parents leave the unit 'they're incredibly capable'

By Louise Kinross

Dr. Andrea Hoffman is a developmental pediatrician who works with children with complex medical problems on our inpatient units and in our feeding and neuromotor clinics. She was hired in 2013 after finishing her developmental fellowship here. She’s also a black belt in karate who first came to Holland Bloorview as a volunteer.

BLOOM: What led you into this field?

Andrea Hoffman: I started volunteering at Holland Bloorview when I was 15 at the old Hugh MacMillan centre. I lived close by and I started in Spiral Garden. During the school year I volunteered at Laura Hunter’s gym skills program, which evolved into a summer job at her bikes and balls camp.

The family of a child I supported there one-on-one invited me to their home to get to know them before camp started. It was one of those opportunities where I got to see the love and happiness and joy, but also the complexity and challenges that families face raising a child with special needs. When I left for university I knew I wanted to be in health care. Ultimately I decided to go into medicine. I came back here as a medical student on a general elective and as a resident in general development. I saw a number of different aspects of child development and decided this was a good fit.

BLOOM: Why was it a good fit?

Andrea Hoffman: I’m a detail-oriented person, which works well for complex care, and I like the idea in child development of looking more holistically at the child and family, instead of just at an individual bodily system. I like the time we can spend to get to know children and families—to follow them longitudinally to see how both change over time. The other piece I really like is supporting kids and families in trying to optimize quality of life and helping kids reach their full potential. 

BLOOM: What's a typical day here like?

Andrea Hoffman: I don’t think I have a typical day. Every day is different, which is why I love this work. I wear four clinical hats. I’m one of the doctors on the complex continuing care (CCC) unit and with inpatient respite care, and I’m the doctor on our multidisciplinary, outpatient feeding team. I also see children in a general development clinic. What ties those different areas together is that most of the children have some degree of medical complexity. On top of that, I’m involved in research and education and on various hospital committees.

BLOOM: What do you love about your job?

Andrea Hoffman: So much. Seeing how families celebrate their children and find creative ways to include them in family activities. One family spoke proudly about how they adapt water skiing at the cottage so the child can be a part of it.

It’s amazing to be part of a team that supports a child’s development. Many of the things that come easily to other children require so much effort for the children that we see. Things other people take for granted are celebrated accomplishments [here]. That changes your perspective on things.

One of the joys on the inpatient unit is seeing the change in children and parents over the course of their admission. Many come to us after a long hospitalization in an intensive care unit, where the medical team does most, or all, of the care. Here the focus changes. We look to parents to be hands-on—to provide the care and increase their confidence and capacity to manage their child’s medical, therapy and emotional needs. At the start, parents are often nervous and hesitant, but when they leave, they’re incredibly capable and the care just flows. That’s a really beautiful thing to see.

BLOOM: What’s the greatest challenge?

Andrea Hoffman: The larger system for children with medical complexity. We rely on the larger system for successful transition to the community and we spend a lot of time doing preparation and advocacy. There have been significant advances in community services. But even when a child gets everything they’re eligible for, it often isn’t enough to fully meet the many needs of families. For families with limited financial resources or social supports we know that the transition can be particularly challenging.

We encourage families, while they’re here, to bring in other family members or friends who may be able to provide regular support, so that we can train them on the child’s care as well. Making sure that parents get a break from their caregiving responsibilities is important. As part of our discharge planning, we like to arrange the child’s first respite stay here, so that families know they’re going to have an opportunity to recharge. We know that maintaining parent wellbeing is critical for the child’s wellbeing.

BLOOM: What kind of issues in the larger system do you see?

Andrea Hoffman: The system isn’t perfect, and the services families receive at home depend on where you live. Some families receive a lot more than others. We’d like the system to be more equitable, so that all families with medical complexity are adequately supported.

We talk to families after they’re discharged and we hear a lot about larger system issues. They’ve been at Holland Bloorview, in a place that celebrates their child and is completely accessible, and when they move home, they may find their child can’t use the playground or be part of other community programs. Some families are embraced by their community, and others aren’t. It can be hard to prepare a family for what to expect.

There’s definitely more work to be done. More resources are important but it would be great if there was also more flexibility for families to decide how they use funding. For example, if families don’t use all of their overnight nursing hours they can’t use those dollars for something else. For some families, more overnight nursing may be the answer, but for some, more support in other areas may improve the quality of life for the child and family.

BLOOM: What kind of emotions come with this job?

Andrea Hoffman: It’s the full gamut. One perfect example is a child we were transitioning home recently. I was at the bedside to give the discharge summary and say goodbye. There were lots of hugs and joy and celebration and happiness. Just as I was walking out of the room a team member walked in and said ‘We have a glitch.’ The emotion quickly switched to frustration when I learned that one of the community providers was unable to release the equipment the child needed. We almost had to delay the discharge. Instead, we spent the afternoon troubleshooting with equipment providers and the local hospital to ensure everything was ready when the family finally arrived.

There are other times when we share in the family’s feelings of anger and sadness. And sometimes we feel helpless, when there are limits on what we can provide and decisions are out of our control. Sometimes our emotions are directed at the system itself.

BLOOM: How do you not get stuck in that frustration?

Andrea Hoffman: I try to focus on what we can do. We have an opportunity to support families and make a positive difference during what may be one of the most challenging times of their lives. And the families show incredible strength, resilience and dedication. Families trust us with a lot of responsibility, and share a lot of information, and it’s an honour to support them. That said, you can’t help but share in their sadness, sometimes, or in their frustration or anger. And I think that’s okay.

BLOOM: Is there anything specific you do to help cope with those emotions?

Andrea Hoffman: I work in amazing teams. There’s no way we could do this work on our own, without the larger team working together. When we’re dealing with a difficult situation we often talk together. We debrief as a team and we support one another. We acknowledge the emotions and the challenges, so we can continue to provide the compassionate and empathetic care our clients need, without necessarily carrying it all ourselves. I’ve also tried to learn about mindfulness to help cope with some of the big emotions that come with this job. Having an understanding and supportive family also goes a long way in dealing with the stress of it all.

BLOOM: I understand you’re a black belt in karate. Is that something that helps with stress?

Andrea Hoffman: Yes. Having an outlet outside of work—an interest or a hobby—is really important. It’s something I do for me that is separate from work and family and all my commitments. Karate is very physical and I find it’s a release of energy—both positive and negative. It’s an opportunity to do something for me and it’s great for stress relief.

BLOOM: Is there anything you want parents to know?

Andrea Hoffman: I encourage families to ask questions and have a dialogue with their doctor. I always try to be open and honest with parents. I know that when families ask questions they’re looking out for the best interests of their child. I know parents are the expert in their child’s care and I encourage them to advocate for their needs. I learned early in my training that if a parent says something is wrong, something is wrong, and we need to acknowledge and respect that.

I also encourage parents to start thinking about Advance Care Planning for their child. We want to come at it in a holistic way—to understand the child in the context of their family and larger community.

On CCC we've started to meet with families to talk about how they've been affected by their hospital experience, and to talk about their larger goals, hopes and dreams for their child. We also try to understand their fears and worries. We know families have a lot of ‘what if?’ questions. They may have questions about what they would do if their child got sick in the future, or about the different parts of resuscitation and what it means to be “full code.”

We invite parents to talk about those questions with team members, rather than worry about them on their own. It’s important to reflect on what they might do in a future medical emergency, without the pressure of having to make decisions immediately. Different families will make different decisions, but if you don’t have an open and honest conversation, families don’t know what they’re consenting to, or the options available. It’s just one more way that we can help empower families to make choices that are right for them.

BLOOM: I understand your mother has an award named after her and her work as an ombudsperson? Did her sense of social justice influence your career choice?

Andrea Hoffman: I love this question. Both my parents had a huge impact on my life. My love of science and medicine came from my father, who is a clinical biochemist. On the other hand, my mother was the ombudsman at several universities and colleges over her career. She was also an investigator for the Ombudsman’s Office of the Department of National Defence and the Canadian Armed Forces. When she passed away in 2006 an award was created in her honour to recognize people in the defence community who go above and beyond to bring about positive and lasting change. She strived to do that on a daily basis.

My mother taught me about the importance of listening to everyone, as everyone has a story that is special and unique. Communication, and sometimes conflict resolution, is a critical part of what we do in medicine and I learned a lot from her. She taught me that as one person you have the power to help many, and that by changing the system you can help many more.

When my mom was sick in 2005, I learned what it was like to be on the other side of the health-care relationship. There were people who were just focused on doing their job and to them my mom was just another patient. But a handful of people saw her as an individual, and they showed care, compassion and empathy, making some of the worst moments a little less dark for her and our family. I was in medical school at the time and it had a profound impact on the kind of doctor I wanted to be. I try to remember that although this is what we do, day in and day out, for the family in front of us this is a life-changing time. I strive to be someone families feel helped to positively support them on their journey.

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Doctor says we need to give parents space to go 'off script'

By Louise Kinross

A year ago, Dr. Mohammad Zubairi was hired as a developmental pediatrician at Holland Bloorview after completing his fellowship training here. Most days now he’s doing assessments with young children and sharing the diagnosis of autism with their parents. Mohammad’s family has roots in Pakistan, where his grandfather was a doctor who dedicated one day a week to seeing poor patients at subsidized rates. Mohammad grew up in Canada and Saudia Arabia, where his mother was a doctor. He’s interested in how developmental pediatricians work with families who have “values, beliefs and thought patterns different than our own.” He aims to understand families from a big picture perspective that goes beyond the medical.

BLOOM: Why did you want to work with kids?

Mohammad Zubairi: It’s an opportunity to be silly. I grew up in a household with a sibling who was 10 years younger than me, so I was used to that dynamic. Children are always surprising you, and because they surprise they open up doors where you can learn about them. That excites me. The other thing that struck me as a medical student was that kids have a certain resilience we don’t often appreciate in other patient groups.

BLOOM: How did you get into developmental pediatrics?

Mohammad Zubairi: When I was going through pediatrics training at McMaster University I was paired with a mentor who was a developmental pediatrician. There was something about working collaboratively with a number of different health professionals in this field that really intrigued me. I had always been interested in psychology and brain development and when I came to pediatrics I was looking for a field that would allow me to bridge those interests. Developmental pediatrics struck a balance between doing medical assessments and incorporating a fair bit of thinking broadly about how we develop and interact with the world around us.

BLOOM: What do you like about your work with children and families?

Mohammad Zubairi: I’m aware, from speaking to families, that it’s a very fragmented system outside. What I try to do is equip families with resources or tools or strategies to help navigate that real world. Empowering families in that way is where my satisfaction comes from.

BLOOM: What might be in the tool kit you give families?

Mohammad Zubairi: I tailor a number of resources that I pick and choose for each family. It could be something as simple as a particular website that highlights information and strategies that families and schools can use to help children with attention difficulties. I don’t want to overwhelm families, so I wait until I see them three to six months later to add in additional resources.

BLOOM: What are the challenges of your work?

Mohammad Zubairi: The conversations we have are difficult, partly because of the nature of developmental pediatrics. Although we’re trying to standardize the tools we use, there’s still a subjective nature to it. It’s not like ‘Look here, you’ve got a rash, what can we do about it?’ Often the things we’re dealing with are hidden: we’re trying to uncover challenges that may not be immediately apparent to families or other care providers. We run into scenarios where we have to help families cope in the moment with hearing news that they may not have expected, or that they may not know how to deal with. As a clinician, you may have had a difficult conversation with the first family you saw, but you have to go in to see the next family with a clear mind.

BLOOM: How many families would you see on the days you’re doing assessments?

Mohammad Zubairi: I’m in clinic three and a half days a week, and I’d see four to six families a day, some of them new, and some for follow-up. It can be challenging to shift gears from one family to the next.

BLOOM: What’s it like to work in this field emotionally?

Mohammad Zubairi: We want to always prioritize being there for the family, so we don't always express our own emotions in the clinical encounters. That can take a toll later on.

BLOOM: What specific emotions might you feel?

Mohammad Zubairi: Sometimes there’s a feeling of anxiety, of what is this going to mean for the family and how will they respond to this information? There may be a sense of guilt about whether we’ve spent enough time getting to know that family’s story. Sometimes we prioritize the medical piece at the expense of thinking of the bigger picture. What really matters to me is the bigger picture, partly because there aren’t quick fixes or cures in the traditional sense, and being able to convey that to families requires an understanding of the family that goes beyond the diagnosis. You want to be able to convey information in a way that will be meaningful and useful to that family and meet them where they are.

BLOOM: But don’t you ever feel guilty because you’re conveying upsetting news?

Mohammad Zubairi: Yes, I would say that historically I had to deal with feelings of guilt in conveying difficult news. But this guilt has transformed into thinking about how to best empower families to navigate systems when their child may have developmental difficulties—whether that’s in the form of writing a letter of support, speaking to another professional, or helping the family connect with culturally-appropriate resources.

BLOOM: It must be very challenging for clinicians because what one parent finds helpful in terms of how a doctor shares a diagnosis another parent may find hurtful. People can interpret things very differently, and you don’t know how they’re going to respond going in.

Mohammad Zubairi: Every family, up until they get to Bloorview, has had a story and experiences that have informed them and then we, as clinicians, may allow for some things to be said, or not said, based on the messaging we give. So, for example, we give the message that there’s easy access to interpreters if language is a barrier. But is that enough? What if there’s something beyond the language piece—something that we don’t understand in terms of culture, value systems or beliefs? Sometimes we pay attention to the medical piece, but time doesn’t really permit us to get into these other discussions.

BLOOM: Why did you decide to become a doctor?

Mohammad Zubairi: I had learned that doctors were essentially teachers. In Latin, the word doctor comes from the concept of a teacher. I was always interested in education and I knew I wanted to do some teaching that was not necessarily to students, but in work with families. I have a number of physicians in my family.

My grandfather, when he was a physician decades ago in Pakistan, did what would be considered social medicine—thinking beyond the medical piece to the psychosocial variables that affect a child’s development, health and wellbeing. There are pictures of long line ups of people waiting to see him on the day he dedicated each week to folks who wouldn’t otherwise have access to healthcare. Instead of just seeing the wealthy who could afford regular rates, he chose to offer subsidized rates. My mother is a physician also, and practised in the Middle East. I spent my first six years in Canada and then eight or nine years in Saudi Arabia before moving back to Canada in Grade 10.

BLOOM: How does your experience in different countries influence your practice?

Mohammad Zubairi: The fact that my family’s roots are in Pakistan, and that I’ve spent time between Canada and the Middle East and interacted with people with all sorts of experiences, has shaped me and my ability to engage with families. Here at Holland Bloorview I’ve got the lovely ladies at Tim Horton’s teaching me a few words in Tagalog, from the Philippines. I might use a few words as an ice breaker with a family, to help them feel comfortable. I’ve developed an appreciation for diverse experiences.

BLOOM: I understand you and Dr. Anne Kawamura have been incorporating storytelling into your clinical work.

Mohammad Zubairi: The idea is that we go into an encounter with a certain approach and families come with their own thinking and beliefs and values and information that they want to share. Sometimes the two allign and sometimes they don’t. We’re not talking about asking directly ‘What is your story?’ but thinking about how we respond as clinicians when there are shifts in the narrative away from the medical piece.

So if a family shares information about something stressful that is going on in their life, do we acknowledge and respond to it? Or do we give it some lip service and then put the blinders back on? Medicine has evolved to be algorithmic. There are criteria you need to identify and parameters you need to look for. That means you may not pay attention to other pieces of information the family shares. It’s one thing coming to a diagnosis and it’s another coming to a diagnosis with an understanding of the family. And sometimes they can be at odds with one another. That is where I think understanding can come through storytelling. I haven’t used it a lot in my clinical practice but I’d like to. I think storytelling can be a gateway to better understanding families.

BLOOM: Can you give an example of something a doctor might miss because they’re over-focused on the medical picture?

Mohammad Zubairi: I remember with a recent family I had a trainee spend a whole hour gathering data about a young child with very complex medical needs. At the end, we began discussing the idea of cerebral palsy—and very quickly the mom started sharing things about her belief system and the role religion played in her life and her understanding of her child and the child’s progress. I was surprised, and so was the trainee, that none of this had come out because we were so focused on trying to understand the child medically. I’m interested in the culture of how we encourage, or don’t encourage, families to share that type of information. By hearing family stories we can situate a diagnosis within the big picture of the family and also identify what is important to them over time.

BLOOM: Do you do anything to help you cope with challenging emotions?

Mohammad Zubairi: When I was a trainee I used to go home to my wife and say ‘Oh my goodness, there was another parent who cried today.’ I associated a parent crying with something about the way I was sharing information—that I was somehow bringing those emotions out. Of course those emotions are natural reactions to hearing difficult news.

In between cases now I will go back to my office and take a couple of moments and deep breaths and try to finish up anything with the prior child before going on to the next child. I also do a bit of self cognitive therapy. I tell myself ‘I’m going in to see the next family to help them’ and it’s as simple as saying that. The new family might come in very stressed, and I may have been stressed due to the last scenario, but because we’re here to help, let’s take this mindset.

Outside of work I do a lot of hand drumming to destress—I used to play in a band back in the day. I also play sports—like squash or tennis when the weather isn’t as cold—and sometimes I read non-medical books.

BLOOM: Do doctors here ever talk about some of the difficult emotions they experience?

Mohammad Zubairi: There aren’t many spaces outside of the immediate clinical encounter. If I’m working with a speech pathologist or trainee I may bring out into the open the challenging nature of the case as that’s a good avenue to learn from it. As clinicians, we often struggle with similar types of issues or difficulties. At the same time, there can be an emotional drain that you take, so having the space to talk about that in broader clinician groups would be useful.

BLOOM: Can you tell us about your research?

Mohammad Zubairi: I have a masters in health professions education and I’m interested in reflective practice and the use of simulations. My current work is looking at how developmental pediatricians engage in cultural encounters—so how we engage with values, beliefs and thought patterns that are different than ours.

BLOOM: Why is that needed?

Mohammad Zubairi: Because we live in a multicultural context there are assumptions that we automatically take that into consideration when engaging with families. But we don’t have the data or evidence to show if we are truly addressing issues that relate to a patient’s culture. Every family unit has their own culture. Sometimes we fall back on thinking only about ethnic or religious culture. Cultural ways of thinking about disability have implications for our relationships with families and for how they use the recommendations we make. I’m doing qualitative research about how we can best train developmental pediatricians to engage in these encounters.

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'A big part of my job is telling families the diagnosis'

By Louise Kinross

Dr. Melanie Penner is a developmental pediatrician at Holland Bloorview who focuses on autism. She’s the person who gives parents a diagnosis of autism in their child. Frustrated at the years’ long wait for behaviour therapy in Ontario, she had a study published in JAMA Pediatrics last month that puts the cost of that delay at $267,000 per child over a lifetime. Melanie is happiest when knitting or managing her fantasy baseball team.

BLOOM: Why did you get into developmental pediatrics?

Melanie Penner: Growing up my mom worked as a special education teacher. I was always exposed to kids with physical disabilities, kids with intellectual disabilities, kids with autism, and I loved it. I liked science in school and went to medical school. I remember the day that a developmental pediatrician came and spoke to our class and ever since that day I never wanted to do anything else. I worked as an inclusion counsellor at Parks and Rec camps, so it’s been an ongoing theme in my life. I love to see kids participate and I love to see kids have little successes. I want to be a person who can help them get there.

BLOOM: You also did a degree in health services research.

Melanie Penner: During my pediatric residency I found myself really interested in how care was designed and delivered. I learned that I’m a person who’s quite pragmatic and interested in efficiency. When I was in the second year of my developmental pediatrics fellowship at Holland Bloorview I decided I would do a master's degree in health services research. My daughter was six weeks old at the time, and my husband tried, in vain, to give my baby her first bottle in the Starbucks in the building while I interviewed.

BLOOM: How did you manage to juggle your fellowship, your master's and a new baby?

Melanie Penner: I’m still not sure. I had a six-month mat leave and that’s when I did the interview. I cried the whole way home. But from where I am now, I shouldn’t have been so worried. It was a lot of work, but my daughter was in the daycare here and it was great. It made the transition back to work so much easier, on emotional and logistic levels.

BLOOM: How would you describe your job now?

Melanie Penner: I have two clinical hats. Most of my clinical practice is doing developmental assessments for autism. So I’m giving the parents the first diagnosis. I also work in the psychopharmacology clinic with kids with neurodevelopmental disorders and complex behaviour problems. I’m a scientist in the autism research centre and I do services research for autism. Right now I have a project looking at whether community pediatricians can diagnose autism accurately, instead of families waiting months upon months to come here.

BLOOM: What’s challenging?

Melanie Penner: A big part of my job is telling families the diagnosis of autism and helping them through the initial stages. That takes an emotional toll. I’ve come to learn recently that I can carry that with me in more ways than I think. If I’m feeling poured out emotionally, I don’t necessarily have the reserves when I get home to deal with the negotiation of getting my daughter into bath and bed. Sometimes by the end of the day, I definitely need a bit of quiet time to myself.

BLOOM: Do you do anything proactive to help yourself cope?

Melanie Penner: I’ve taken up knitting. Knitting is my happy place. It totally diffuses the stress out of my fingers. I even knit during meetings and rounds here.

BLOOM: Isn’t it hard to follow a meeting and a knitting pattern?

Melanie Penner: If the knitting is straightforward, it helps me focus. It’s kind of a legitimate fidget to have. There’s one person, who will remain nameless, who likes to sit beside me because she finds sitting close to my rhythmic knitting movements soothing.

BLOOM: There’s the clacking sound of the needles.

Melanie Penner: Yes. It’s a sensory experience. What I like about knitting as well is that it helps me to be gracious with myself. If I make a mistake, I have the option, which you don’t have in life, of going back and pulling everything out and fixing it. But I’ve gotten better at just leaving my mistakes in. I call it artisanal charm, so people know it’s hand-made. It’s a good way to think about forgiving myself and going easier on myself. I’m a recovering perfectionist, so it’s a good exercise for me.

BLOOM: I’ve read articles in the New York Times about how knitting is similar to mindfulness meditation.

Melanie Penner: I’ve read those too. Because of the therapeutic benefits I’ve had I’m going to start a knitting group for teenagers with autism. Knitting aligns so nicely with classic autistic strengths: if you look at a pattern it’s a very visual exercise to go through and knitting involves sticking to a repetitive task that others might find too monotonous. There’s the sensory experience of it. And a knitting circle has a social context but you can do it without making eye contact.

BLOOM: When will that start?

Melanie Penner: I’m putting the materials together and I hope by the fall of 2017. We’ve applied for Centres for Leadership funding. I have knitting teachers on board, a behaviour therapist and occupational therapist to modify the program, and an adult with autism who’s been knitting for 20 years just joined the team.

BLOOM: What’s challenging with research?

Melanie Penner: Rejection is built into the job. Most of the time you won’t be successful with grant applications. That’s been another emotional learning point for me—to learn to bounce back from those things. I’m a huge baseball fan and I’ve had to take on the mindset of a baseball player: that if you’re succeeding 30 per cent of the time, you’re an all-star. If you strike out you can snap a bat over your leg but you still have to go up to the plate next time. Life is the metaphor through which I understand baseball. That’s how important baseball is to me.

BLOOM: Do you play?

Melanie Penner: No, I’m terrible at ball sports. But I manage a fantasy baseball team. You get together with a bunch of people and draft players.

BLOOM: What do you love about your work?

Melanie Penner: I get to see families six months after the autism diagnosis and what’s amazing is that over that time, you see that some families are really thriving and their kids are thriving. You often leave them in this difficult state, and then six months later you get to see how their thinking around the meaning of autism has changed. It’s changed not who their child is, but how they view certain things about their child. They have a better understanding of their child and we get to celebrate the gains their child has made.

With research, rewards are a bit more clearly defined: when you get a paper accepted or get a grant, that feeling is incredible. I try to ride it as long as I can. When I found out I got a small CIHR grant for my study looking at the accuracy of pediatrician diagnosis of autism, I was crying so much I couldn’t get the words out to my husband.

BLOOM: Have your thoughts about autism changed?

Melanie Penner: Most of what I know about autism comes from talking to kids and teenagers with autism and their parents. I don’t get much exposure to adults, but I do read a lot of literature by adults. My thinking has changed. Being a physician, and coming from a place where we think in terms of biomedical disease-based models, even though we’re trying to break out of that, this [rehab] world is so different. I see the ways that acceptance plays into things and I’ve tried to learn a lot from neurodiversity advocates. One thing I keep in mind is that the construct of autism I have now shouldn’t be the same way I’ll think of it in 10 or 20 years.

BLOOM: What drew you to this area?

Melanie Penner: Autism captured my imagination. I think it’s the way our population thinks so differently. The way my patients see the world and express themselves is always a pleasant surprise and it challenges me and my assumptions.

BLOOM: How do you balance acceptance of disability with our desire to fix things?

Melanie Penner: Even from the time of diagnosis, I’m trying to bring in these ideas of acceptance now. A lot of our therapies have focused on trying to give children the skills to function in the neurotypical world. The bigger work we have to do is making the world a more friendly and inclusive place where people with autism and other differences can shine and contribute in the way they want to. Often parents will ask about what they can do to make their child normal. But if the child is doing something like flapping—that’s not hurting anybody—I tell them that’s not a ‘him’ or ‘her’ problem, that’s an ‘us’ problem. I have no interest in trying to take those things away.

BLOOM: It must be hard to be the point person giving a diagnosis when the average wait for publicly-covered therapy is two and a half years.

Melanie Penner: It’s always a difficult discussion that contributes to some of the emotional baggage I end up with. It’s a two-tiered system where families with means can pay privately to access therapy right away. We do have some access to charity funding that can be put towards private services sooner, and we’ve figured out little workarounds that we try to employ with the help of our social workers. I also have parents who seek out a lot of information on their own and implement different parts of therapy. Some parents have even trained to become behaviour therapists.

BLOOM: What are your hopes for the future?

Melanie Penner: I hope my work can help to create a more equitable future for people with autism and their families.

Melanie was the focus of this Ontario Medical Association video Putting Patients First. The photo above is a still image from the video.

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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.

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'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.

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