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.