Friday, September 21, 2018

'I want a job where I play with toys and make kids feel awesome'

Photo and interview by Louise Kinross

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.

Monday, September 17, 2018

Why parents get hooked on 'normal'

By Louise Kinross

On Friday I did a narrative workshop with developmental pediatrician and psychology fellows at Holland Bloorview.

Something that emerged in the comics the fellows drew was how parents express their hope that their child will be “normal”—even years after receiving a disability diagnosis. 

It got me thinking about how the word normal is really a code word for 
“value.” In our culture, normal is valued, and disability is not. 

When my own son was a baby and toddler (but not toddling yet), I would always wait until our visit with the pediatrician was ending, before blurting out: “Will he lead a normal life?”

My son has a rare genetic condition, and the doctor had told me that 
he couldn’t answer that question. There were only 60 reported cases of his syndrome, and the children were affected in different ways. 

Yet I continued to ask the 
normal question—always at the end of the visit—knowing the doctor probably thought I was dippy, or hugely forgetful. Why?

It was years later, working at Holland Bloorview, when it hit me.

As a young mom with a child with disabilities, I didn’t want my son to be judged by others. 
When I was out and about, I felt I needed to put on a brave face to influence how other people saw him. It was only in the privacy of the pediatrician’s office that I let my guard down and shared my concern for my son’s future. That is the tremendous power that health-care workers hold.

Parents and patients honour doctors, and other therapists, by sharing their greatest fears and feelings of inadequacy.

So why did I repeatedly ask if my son would lead a normal life?

Because what I wanted to hear was that my son had value. I wanted to hear that I had a great son, and whether he led a normal life or not, that wouldn’t change. I wanted the doctor to affirm what I saw in my son. I wanted to hear it from an expert.
 But I didn’t know how to ask for that. 

A couple of years ago there was a story in The New York Times about these so-called doorknob moments. They occur at the end of a clinical visit, just as the doctor is putting his or her hand on the doorknob to leave. The parent, or patient, waits until the last second before they have the nerve to blurt out what is truly troubling them.

“Often, the most important service we provide a patient is not what we think it is,” wrote Dr. Adam Cifu in an opinion piece last month in The
 Journal of the American Medical Association. Dr. Cifu, who works in the department of medicine at the University of Chicago, suggests that the emotional support and space clinicians offer patients is as important as “clinical acumen or medical knowledge.” 

His piece
 reminds me of a finding of our Holland Bloorview study looking at whether a narrative group promoted empathy in inpatient nurses. 

Prior to the six-week group, participants described a tension in balancing “direct nursing”—their medical tasks, procedures and documentation—with providing emotional support. Given time pressures and the expectation to maintain professional detachment, the nurses prioritized medical tasks over emotional support, describing the latter as “outside my nursing hat.”

After reading, writing and drawing patient and clinical stories, the nurses elevated compassion, listening, being flexible and providing a safe space to families, as being on par with direct nursing tasks. For example, “Yes, we do the technical stuff but we feel like we’re so much more the emotion, the support, as well,” one said.
 And: “Really taking that time to sit down, as we were experiencing in the six-week [intervention], right? Give them a safe space.” 

Part of listening to parents is trying to hear the meaning or emotion 
behind their words (which is not always self-evident). 

Every parent wants to know their child has value and is valued by others.

Oftentimes, in the early days of a child’s diagnosis, parents pin their child’s worth on hopes for future change—that the child will walk when they’ve been told this is unlikely, or defy expectations in some other area.

The problem with hope is that it’s never now
—and it always hinges on the child better squeezing into what the culture deems normal.

What about the child we have right in front of us? The way we think about human value is a choice. Why not choose to see value in this child, right now, just as he or she is? Can't value be inherent in a child, simply because they're human? 

When a parent starts talking about their hopes for their child's future, don't forget to also ask about their child's value—now. If the child isn't able to communicate easily, ask parents what makes this child tick. 
What do they love? What do they hate? What kind of personality do they have? What does the parent most enjoy doing with their child? When are they most happy together? What does the parent most love about their child?

Don't forget to talk about the cool qualities in the little patient you see in front of you. Because every child has them. Don't forget to tell parents they have a great kid.

When parents get hooked on their child being 'normal,' what about sharing this idea that they can choose to see their child's value as inherent, as unchangeable, as their birthright? Your child has value—right now—is a powerful message.

Tuesday, September 11, 2018

Listening to a band or hosting a tea party makes therapy more fun

Photos and interview by Louise Kinross

Carling Robertson (right) is an occupational therapist assistant at Holland Bloorview. She works with children with brain injury and youth preparing for employment. After doing an undergraduate degree in kinesiology, Carling changed course and began working for a trucking company. “I remember the exact moment when I said I can’t do this anymore,” she says. “I had spent months coordinating a huge delivery of hospital beds, and someone forgot to close the back of a 53-foot trailer. One of the beds in a crate fell off, and was super damaged. That broke the camel’s back.” Carling is a dancer and her cousin Deanna was hired recently as a registered practical nurse on the brain injury unit. This is how a client described Carling: "You made my heart so happy. Thank you for always being there for me...through this dark time...With so many other kids to help, you will probably forget me, but I will never forget you!"

BLOOM: How did you get into this field?

Carling Robertson:
My degree in kinesiology was a huge factor in wanting to get back into healthcare. I started to research rehab programs because I wanted to make a difference. I figured working with people during one of the most stressful and difficult times in their lives would allow me to do that. It appealed to me because I didn’t want my work to feel like a job, I wanted it to be my purpose. I did the two-year program at Humber, and my second placement was at Holland Bloorview.

BLOOM: What is a typical day like here?

Carling Robertson:
Three days a week I’m doing therapy with children who have acquired brain injury. The other two days I work with our youth employment programs helping to coordinate placements, job coach and facilitate community outings.

BLOOM: What’s the greatest joy?

Carling Robertson:
It’s the progression that you see in clients, and each child learning different things about themselves. With therapy, we’re working toward specific goals, so it’s seeing them achieve those goals. With youth employment, it’s having participants realize they may like doing a job that they’d never thought about. Or seeing them learn how to write a resume, ask for specific accommodations in an interview, or disclose their disability. No matter where I’m working, joy is being able to be a part of someone’s growth and their journey.

BLOOM: What is the greatest challenge?

Carling Robertson:
When I first started, it was the compassion fatigue. I didn’t realize it would hit me so hard.

BLOOM: I imagine it would be particularly hard working with children with acquired disabilities, and their families.

Carling Robertson:
I found myself leaving the building, and unable to shut off thinking about clients I’d just seen or others I’d be seeing soon. I’d throw myself into imagining what they were feeling, or what their family was feeling. I would go down a rabbit hole, and then I’d be completely exhausted, and feel like the weight of the world was on my shoulders.

BLOOM: How did you learn to manage that?

Carling Robertson:
I have extremely supportive teams in both areas. I was able to talk to them and ask: ‘How have you been able to do this for 20 or 30 years and not burn out?’

They told me this happens when you begin to work in this world. They said you need to know you’re doing everything you can, and the families are getting all of the resources we have to provide. To be there as a support is really important, but if you’re not there completely, they’re not going to benefit from it. It was the old airline analogy about putting on your own oxygen mask first.

BLOOM: So how do you personally do that?

Carling Robertson:
I had to teach myself that when I leave the building, I shut it off, and I don’t think about it till I’m back in the building the next day. If I can’t shut it off, I’ll talk to the OT I’m working with, and we’ll talk through it. It’s hard to explain this to people who aren’t in health care, so I’m super grateful to have supportive teams.

BLOOM: Do you do anything physical to manage stress?

Carling Robertson:
I’m a dancer and I love to dance if I can. It’s a physical [way] to get out all of the stress, confusion and anxiety that comes up on a daily basis. It helps me get it out of my body.

BLOOM: What have you learned from families?

Carling Robertson:
I’ve learned that families are incredibly resilient, and that every family is different. Every family has their own process, and every family copes differently. I’ve learned not to take things personally, because families are in such a difficult situation.

BLOOM: Acquired brain injury must have been a huge learning curve.

Carling Robertson:
There’s only so much you can learn from a textbook. In school, everything is presented in kind of a cookie-cutter way—these are the symptoms that are typically present. But when you come here, you realize every client is so different, even though they may have experienced the same type of injury.

You need to learn skills to adapt what you do based on the client. Two clients might have the same goals, but the way they get there will be different. Some of the kids are only motivated by Peppa Pig or Paw Patrol, while for others it’s their favourite band. Learning how to incorporate what they love into therapy makes it so much more meaningful. One of my favourite parts of the job is thinking outside the box.

BLOOM: What are the most important qualities for someone in your job?

Carling Robertson:
Patience is number one and empathy for sure. You have to be flexible and adaptable, because no two days are the same. One of the great things about Holland Bloorview is that I’m given latitude to be creative and to come up with new ideas. For example, one of my young clients asked if I could go to a tea party at her house. So we’re going to do it here, instead. You need a willingness to learn. If you think you know everything, that’s detrimental. You also need a willingness to accept constructive feedback from colleagues and families.

BLOOM: If you could change one thing in children’s rehab, what would it be?

Carling Robertson:
I think the gaps in programs and resources for specific age groups. I’d love one long, continuous road map of resources from birth, all the way to employment.

BLOOM: You have a tattoo on your arm. What does it say?

Carling Robertson:
It says curiouser and curiouser. It’s the only quote I could remember from Alice in Wonderland. It makes me think of someone observing something that’s a bit different, and wanting to learn more about it, to get to the bottom of it. It’s about thinking more critically. I knew that being curious would be a constant in my life. I’m super curious getting to know each client, and finding out how they tick, and what I can include in therapy that will make just that little bit of a difference.

Wednesday, September 5, 2018

'The biggest thing is just... the joy'

We're excited to share our new A Family Like Mine video! This one features Joanne Downing and her husband Mark, and their children Katherine, Matthew and Andrew.

Matthew, 18, known as Mattie, has cerebral palsy.

“The greatest thing about Matthew is that he’s such a happy guy all the time,” Mark says. “He really lives life in the moment, you know, as you often hear people say you should. He enjoys most aspects of his life. He doesn’t worry about things. He doesn’t fuss about the future…He brings your spirits up.”

Matthew, who uses a communication device, is in high school, and attends arts and music programs at Holland Bloorview several times a week. He loves woodworking in our Spiral Garden arts camp, and has a fabulous sense of humour. “I’d say probably the biggest thing is just …the joy,” says Matthew’s brother Andrew, when describing their relationship. “Every time I come home, he’s the first voice I hear, yelling my name.”

Joanne says finding places that Matthew can get into in his wheelchair has been a big challenge. She worries about what life will be like when he ages out of school. “I fear that Matthew’s life will not be as meaningful if he’s not continuing to learn, or he’ll be isolated,” she says. “It will be hard for him. It will be hard for us, to be honest.” Joanne says she’s proud of the work she does to educate other parents as a family leader at Holland Bloorview.

A Family Like Mine is a BLOOM video series about diverse families raising children with disabilities. It's used to educate students in the University of Toronto's medical school. Check out the playlist of eight videos.