Lisa Kakonge is a speech-language pathologist with Holland Bloorview's brain injury program. She did her training in Albany, New York, but always planned on coming back to Toronto, and had her eye on working here since high school.
BLOOM: How did you get into the field?
Lisa Kakonge: I knew about speech pathology from the time I was four years old. I have a brother one year older, and he had a severe phonological disorder. All of his sounds were funky. I used to be his interpreter when we went to the playground. When he was five, he started speech therapy and I would go to his weekly sessions with my parents. Back then, I thought it was so cool that he would play with a Mr. Potato Head, and come away sounding better. And when he sounded better, I could see he would feel better. I thought 'I want a job where I play with toys and make kids feel awesome about themselves.'
BLOOM: Which kids do you work with?
Lisa Kakonge: They can be babies up to 18 years old. Most of them have acquired brain injury through stroke, meningitis or a trauma, like a fall from a bike or a car accident. Some of our kids have seizure disorders.
BLOOM: You said you're in your 14th year at Holland Bloorview. Was this your first job after school?
Lisa Kakonge: I went to school in Albany, New York. After graduating, I worked for six months for the Boston school system. But I'd always had my eye on Holland Bloorview. I used to take the Sheppard bus to go to Ikea, and I'd see signs for the hospital. Before graduate school, I had worked with a private company as a speech therapy assistant, and they specialized in traumatic brain injury. I wanted to do something related to kids and rehab. Three full-time jobs came up here at the same time, and I applied for all three and was offered my choice. I chose outpatient brain injury.
BLOOM: What kind of therapy do you use?
Lisa Kakonge: It varies greatly. Our inpatient cases start with a five-day assessment looking at general areas of strength and need with speech production, language and the interplay between thinking and language performance. We find goal areas such as word finding, or working on motor speech challenges.
BLOOM: Is that for kids who have trouble with the physical mechanics of speaking?
Lisa Kakonge: Yes. We also work on language processing, how they understand and integrate information and being able to express things in a coherent way. A few years ago we moved to a seamless care model so I work with inpatients, day-patients and outpatients.
BLOOM: What is a typical day like?
Lisa Kakonge: I usually have four to five children a day, and based on their age and tolerance, the sessions are between 30 and 60 minutes.
BLOOM: So today I saw you playing with the Fisher Price school bus and plane.
Lisa Kakonge: I choose toys based on client and parent feedback about what they find interesting. Today we were working on the concepts of in and out, up and down, and on top and behind.
BLOOM: Do you usually get down on the ground with kids?
Lisa Kakonge: Yes, getting down to their level allows me to see what they're interested in, and what I can comment on. It's always easier to do these things through play. Today, when we were putting the blocks away, the client said 'away,' which I'd never heard before. That wouldn't have happened if if I had controlled things.
BLOOM: What are the joys of the job?
Lisa Kakonge: Seeing change. Setting goals that are collaborative with the parent and client and actually seeing change over time. We have graduated goals, and I review them every three to four weeks. Being able to show parents 'This is where they started and this is where they are.' And having a conversation about where we go next. It's really impactful to see that change over time.
BLOOM: It seems like acquired brain injury would generate some different emotions in parents compared with the experience of having a child born with a disability. What are the challenges?
Lisa Kakonge: You touched on it. With a brain injury, it's something that is often very new. It's not just the changes in language skills, or changes in the interplay of attention, memory and planning on language, that families deal with—it's the whole picture of grief over what has brought them here. It's that idea of having to grow into the brain injury, and not knowing what the future looks like. These were typically developing children and something happened for them to be here, and that's a lot to cope with, for parents, and even for clinicians.
BLOOM: How do you cope with that?
Lisa Kakonge: I talk a lot with my team. We meet once every week or two, and it's an opportunity for someone to say 'How are you dealing with that particularly big emotional case?'
BLOOM: Why does it help to talk about it?
Lisa Kakonge: It helps because it normalizes your feelings. It doesn't take the feelings away, but it helps you unpack the feelings, so you don't bring that into therapy sessions. I never want my response to how I'm coping to impact the care I'm giving. Most colleagues have had similar situations, and it's an opportunity to be heard.
BLOOM: What are the main emotions you experience?
Lisa Kakonge: Honestly? Grief. And shock. Some cases are terribly shocking and confusing.
BLOOM: Do you have any other strategies for managing stress?
Lisa Kakonge: I'm a good walker. I put my my head phones on and pump really loud music. I used to walk down in the ravine behind the hospital—until I saw a coyote one day. Now I just walk through the neighbourhood—or to Whole Foods. I have two girls who are very busy and rambunctious and we spend a lot of time together at the park and biking. Even after a hard day, it's always such a comfort to know I'm going home. I'm biased, but I have awesome kids, and they are very empathetic. They'll say 'Today looks like it was a hard day.' Then they'll run to make me tea. I'm signed up for the mindfulness self-compassion course with Anna Marie Batelaan and I think that will be really helpful too.
BLOOM: What have you learned from families?
Lisa Kakonge: They have this ability to walk with so much grace in the face of adversity—so much courage. I've learned a lot of patience. When I think about it, the parents who come in often have many children to care for, not just the child here. How they navigate that—caring for the self, for the family system, and are still present for the child here—I don't know how they do it.
BLOOM: If you could go back and give yourself advice on your first day here, what would it be?
Lisa Kakonge: I think I would say 'It's okay not to know. You're going to work from the point of view of what clients and families feel they want and need.' When I first started, I felt really overwhelmed. I felt I've graduated, and I should know everything. But there's a lot of strength in saying 'I'm not sure, but I'm going to find out.' I had a really supportive team, and thankfully there were more seasoned speech pathologists who had put in the time, and had really neat clinical insights. I was never shy to reach out to others, to ask questions and to brainstorm. I would also tell myself to practise work-life balance. I didn't have a lot of that in my early years. I was always conscious of the deliverables of my program. Everything would get done, but it would be because I was working really long hours. Work-life balance is key to ensure you don't experience burnout.
BLOOM: If you could change one thing about children's rehab, what would it be?
Lisa Kakonge: More staffing resources would be wonderful.
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