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. 

Friday, August 31, 2018

In Baby and Me, parents craft a lullaby for hospitalized infant

By Louise Kinross

When a child is born premature or with serious medical problems, parents’ plans go out the window. Instead of getting to know each other in the relaxed and quiet safety of their home, parents sit at a hospital crib, unsure of how to interact with the newborn beneath the wires and noisy equipment.

While their baby is in intensive care or rehab, parents may miss some of the most basic bonding experiences.

For example, a mother attending Holland Bloorview’s new Baby and Me program, noted that when she lay down beside her child on a mattress in the program, it was the first time she’d ever snuggled in bed with her baby. The baby was seven months old.

One morning a week, inpatient babies up to 18 months and their moms or dads meet in Holland Bloorview’s music therapy room for 45 minutes of creative arts psychotherapy, which includes art- and music-making.

“We started the group to facilitate creative and playful opportunities between caregiver and child,” says Eunice Kang, a registered psychotherapist and music therapist at Holland Bloorview. “We offer a means of coping with trauma and help parents connect to their infants through song writing and creating art. It’s an opportunity to stop and take stock of their journey so far—to talk about the difficulties and celebrate the achievements.”

The session begins with parents playing soothing bells of different pitches. They then choose to compose a personal lullaby for their child, called a "song of kin," or paint and decorate a piece of canvas to honour their baby.

Eunice and Andrea Lamont, also a registered psychotherapist and music therapist, learned the "song of kin" technique from Dr. Joanne Loewy. Last year they attended Dr. Loewy's continuing education program in the neonatal intensive care unit at Mount Sinai Hospital in New York City. They then worked with Shawna Perkins, Holland Bloorview's therapeutic playroom coordinator and art therapist, to adapt the techniques for the growing number of infant patients we see here.

For the lullaby, parents are asked to choose a favourite family song, then work with Eunice and Andrea to create meaningful lyrics for their child. “The baby has experienced a lot of stress being in new hospital environments, and we know that listening to Mommy or Daddy sing to them will help the baby regulate their emotions and bond,” Eunice says. “While we’re making the lullaby, we listen to the family’s concerns and issues. It’s a quiet time, with no beeping alarm sounds or interruptions, that can also be emotional and cathartic for parents.”

In addition to the lullaby, parents and babies work on their art canvas with Shawna, adding patterns and textures and photos of the baby. At the end, Shawna takes a picture of the child and superimposes it on the canvas, adding the lyrics from the family's lullaby as a border.

The facilitators play instruments to accompany parents singing their lullabies. “With their consent, we record the lullaby and send it to their e-mail or phone,” Eunice says. “Some of the families tell us they cry the first time they hear it, and they cherish the moment they share it with the baby.”

For more information on the Baby and Me program for inpatients, please contact Shawna Perkins at ext. 6268. This project is funded by donors through Holland Bloorview Kids Rehabilitation Foundation.

Thursday, August 30, 2018

Sharing work 'wounds' helps nurses prioritize their own self-care

By Louise Kinross

A six week narrative group for inpatient nurses at Holland Bloorview increased nurses' empathy for their own emotional reactions to working with children after painful bone surgeries or life changing trauma, and their families, according to a study published in The Journal of Pediatric Nursing last month.

BLOOM reported earlier on how the narrative training increased empathy for patients and families and for the nursing team.

This piece looks at how the six, 90-minute sessions of writing, drawing and talking about their own nursing stories elicited greater self-compassion in nurses. Participants
 were able to share work-related emotional wounds they had sometimes carried for decades.

Knowing they were not alone in experiencing emotions like grief and regret allowed them to let go of what they called medicine's "myth of perfection," and to recognize that to provide the best care, they must first care for their emotional and physical wellbeing.

Each session began with reading of a patient story, poem or comic that addressed common themes in children's rehab such as 'Seeing from different points of view; 'Obstacles to empathy,' and 'Making room for hope.'

Facilitators led a discussion of the reading, then gave participants a related writing or drawing prompt. For example, 'In a three-panel comic, tell the story of a patient through their parents' eyes.' Participants then discussed and shared their work.

In the study, empathy is defined as "The capacity to imagine the situation of each patient and their family—understanding their feelings and perspective, and responding in ways that make patients feel heard and cared for."

Participants worked with children hospitalized at Holland Bloorview following painful bone surgeries or life-changing trauma, such as traumatic brain injury, or with complex medical problems. Each nurse did an in-depth interview before and after the group.

Prior to the intervention, nurses said little about self-empathy, and instead spoke about efforts to control or hide emotions like grief, regret or guilt. "I'm still learning and trying to control my emotions," said one. "If I can just not...freak out right away." They also 
expressed an intense desire to avoid failure. "I need to learn to...try not to take it personally, but you do. Because you feel like it's your fault, even though it's not."

Their efforts to cope with stress were often reactive, and didn't involve seeking out nursing peers. For example, "I would go myself and cry in one of the rooms."

In addition, they regularly described struggling to absorb difficult or abusive behaviours in patients, parents, and co-workers. "You want to be able to stand up for yourself, but it's hard to figure out that line with family-centred care," said one. "Professionally too, right?"

After the narrative group, many nurses said it was the first time in their career they'd been able to talk about emotional wounds from traumatic work incidents. "It happened like 17 years ago," said one. "You don't realize sometimes that you haven't totally resolved something." And: "[The intervention was] like therapy on a whole different kind of level."

Hearing that all nurses make mistakes and experience challenging emotions led them to let go of the pretense of perfection, and to be more comfortable with ambiguity. "Not being so scared to tell them I don't know... because we don't have all the answers," is how one described the change.

After the group, nurses stressed the need to proactively take care of themselves. "It means not overworking your body, like not working more hours than you're physically capable of, making sure you take your breaks at work, making sure you've made time to do fun things outside of work."

They were less likely to fixate on mistakes, acknowledging the need for humility and self-compassion. "Not being so upset with myself when things don't go right," said one. "[The intervention] confirmed that it's okay if I don't know, because not everyone knows everything either," said another. "I can see how that shift happened throughout the weeks."

After the group, participants were more likely to reflect creatively on mistakes and figure out how to do something differently the next time, and to approach, rather than avoid, emotionally charged family situations. 

One theme that only surfaced after the group was pride in nursing. "The once-a-week [intervention] really brings you back to the purpose of my role..." said one. Sharing stories that revealed the profound influence nurses have on patients and families boosted their confidence. "I felt good about myself being a nurse being part of the group...because it gives me in-depth thinking of... how much we are doing right, like in terms of client care."

Many were reminded of why they became nurses in the first place. "I'm impacting people's lives," said one. "I think we forget how much we do here. Just talking about it, listening to the other staff's experiences here and elsewhere, it makes you realize how important your role is." 

This study was funded by a Catalyst Grant from the Bloorview Research Institute. The lead investigator was Keith Adamson, then collaborative practice director at Holland Bloorview. Also on the team was Sonia Sengsavang, a PhD candidate in developmental psychology from Laurier University and Michelle Balkaran, a nurse who is now an interim operations manager at Holland Bloorview. The three facilitators were Andrea Charise and Shelley Wall, both professors at the University of Toronto, and BLOOM editor Louise Kinross, who is also the parent of a son who has been an inpatient at Holland Bloorview. 

Tuesday, August 28, 2018

When Bay Luu isn't caring for her grandson, she's exercising

By Louise Kinross

On Friday I looked out my window at Holland Bloorview and saw Bay Luu, 73, pushing her grandson Nicholas, 17, in a wheelchair. A little later I glanced out and Bay was on her own, doing an aerobic step routine on the basketball court—minus the step. After that she did yoga poses and stretches, including sitting on the tarmac with her legs stretched out like a ballerina, and her head, chest and arms touching the ground. Bay has been sleeping here at Holland Bloorview with her grandson Nicholas, who has a brain anomaly called pachygyria, and is recovering from orthopedic surgery. I wanted to find out how Bay incorporates exercise into her days at the hospital, and how it helps her care for her grandson.

While talking to her, I learned Bay and her family spent a perilous 11 days in a fishing boat sailing from Saigon to Malaysia in 1976, after being stripped of their house, store and belongings during the 1975 Communist take-over of South Vietnam. Prior to their escape, Bay's husband Thanh was sent to a remote labour camp while she and her children lived for months with other families in a church and school. "If the Communists had caught us I would have pushed the children into the sea, then jumped myself," Bay told The Ottawa Citizen in a story about her family in 1978 (see photo at the bottom). The year before they arrived in Ottawa as refugees.

BLOOM: Tell us a bit about Nicholas?

Bay Luu:
He doesn’t talk, but he walks a little. He understands everything. He will shake or nod his head if you ask him a question, or use sign language or facial expressions. At home he goes to school. I live with my daughter Hanh’s family, so that his parents can go to work during the day. Nicholas loves Thomas the Train. His dad has bought him the whole set. He likes to go to the computer and search for information on each of the characters. When he was diagnosed, the doctor said he was one in a million.

BLOOM: How long have you been living with Nicholas’s family?

Bay Luu:
It will be 18 years in January. After we found out Nicholas would have special needs, we sold our house in Ottawa and I came here to help. My husband stayed near Perth, because he doesn’t like the city.

BLOOM: What is your routine at home?

Bay Luu:
In the morning I wake Nicholas up at 6 o’clock and help him go to the washroom and brush his teeth and we go down for breakfast. I pack him a lunch. He likes little bits of French toast he can eat by himself, and two yogurt bottles. In the morning I make him oatmeal. At 7:30 the bus comes to pick him up. Then I go for a walk. I come back at around 12 or 1 and cook something. I cook his dinner for a long time so it’s chunky, but very soft. I chop the carrots and the chicken small, and cook them with rice and chicken broth. He comes home at 3:15. At 3:30 he does half an hour of exercise on the elliptical in our basement. That’s when I do my stretches. Then he has oatmeal and a bath and his dinner. We stretch his legs in braces for about an hour-and-a-half in the evening. He goes to sleep at 8:30 when he’s at school. He sleeps with me. 

BLOOM: Does he sleep through the night?

Bay Luu: Yes, he sleeps well.

BLOOM: I know children with his condition sometimes have seizures.

Bay Luu:
We are very lucky and he’s had no seizures.

BLOOM: What is your exercise routine at Holland Bloorview?

Bay Luu:
I get Nicholas ready in the morning and he goes to recreation at about 9:30. Then I go out to exercise. First I go upstairs to the 6th floor and I walk down to Level zero and up to 6 again, and then I go outside. I do step, stretches and yoga on the basketball court. I have about an hour and a half to exercise, so after that I may go for a walk in the ravine or walk to Metro. At 11:30 I get Nicholas and help him with his lunch. Then he relaxes on his bed with the TV or iPad. In the evening I do the stairs again. I walk up to the 6th floor, then down to level zero, and back to the third floor.

BLOOM: Why is your exercise important?

Bay Luu:
I have to move, I can’t sit. I feel better and my knees are better. I used to take painkillers for arthritis, but when I exercise I don’t need to. I’m happier when I exercise. If I don’t walk for two days I feel sad. At home I walk five days a week. I also eat lots of vegetables and fruit and drink two litres of water every day. It helps me stay well and healthy, so I don’t have to take pills or be in the hospital. At my medical checkup this year I didn’t have any problems.

BLOOM: Did you have experience with disability before your grandson was born?

Bay Luu:
No, no experience. No one taught me how to take care of Nicholas—by living with him you figure it out. I felt very sad, but if God gives this to you, we have to accept it. It doesn’t help to be sad or angry. I love Nicholas lots and that makes me happy.

BLOOM: How has this experience changed you?

Bay Luu:
Before Nicholas was born I was busy at work. I worked for 23 years at a fast-food submarine place. Now my children are grown up and they’re okay, so I’m happy and thank God. I try to help the kids with special needs more than before. If I can help, I want to help.

That’s why I don’t go on vacation by myself. Last year I went to Singapore for one-and-a-half months and brought Nicholas.

BLOOM: By yourself?

Bay Luu:
Yes. We stayed with his dad’s family who can help us. A few years ago I went to Vietnam for two months and brought Nicholas. I have a family in Vietnam. It’s hard, but I can’t leave him. I would worry about how he was and whether he’s eating the right food. I will live with him till the last day of my life.

Below Bay Luu (centre) with her husband and three of their children, who arrived as refugees in Ottawa in 1976. The photo is from a 1978 article in The Ottawa Citizen. It notes that at the time of their escape from South Vietnam, Bay's fourth child, a 20-month-old son, had a fever and was left in the care of his grandparents.