Monday, June 26, 2017

Kenyan moms sew a better life for kids

Photos by Chelsea Dee

By Louise Kinross

In 2013, BLOOM covered a unique sewing project in Maai Mahiu, northwest of Nairobi, Kenya, that was changing the lives of mothers of children with disabilities. The project—then called Malaika Mums—is still flourishing and is now called Ubuntu Made. Mothers in the program make cotton bags, reusable coffee sleeves and beaded bracelets that are sold online and through Whole Foods, Zazzle and other businesses. In addition to providing the mothers with a good wage, the income supports an onsite school with rehab services for their children. Ubuntu is an African philosophy meaning “I am because we are,” reflecting the idea that we are all connected. We got an update from Wanjiru Kanuri, a program assistant at Ubuntu Kids.

BLOOM: Why is there a need for this program?

Wanjiru Kanuri: Many Kenyan communities still associate disability with curses and bad omens. This impedes the country’s development of services for children with disabilities, prevents parents from accepting their children’s disabilities, and makes social inclusion for these children almost impossible. We provide specialized education, therapy and rehab services while trying to shift the mentality surrounding disabilities to bring 10 per cent of our population out of the shadows.

BLOOM: What is the goal of Ubuntu Made?

Wanjiru Kanuri: Ubuntu Made is a social business committed to creating lasting changes in the communities we serve. Rather than making products and sourcing materials from other parts of the world, we focus our efforts on specific Kenyan communities, creating full-time jobs, including benefits like healthcare for our makers and their families. This is unheard of in Kenya, where only 10 per cent of the [population] has health coverage. This provides our makers with stability for their lives and their families.

We source many of the materials in our products locally, stimulating the Kenyan economy as a whole. We view our supply chain—from suppliers to makers to our customers—as links providing an ultimate exchange of good from start to finish. Ubuntu Made offsets the cost of our Ubuntu Special Needs Centre. Our revenue stream is a hybrid between earned and donated.

BLOOM: What products are produced?

Wanjiru Kanuri: They include leather and canvas travel tote bags, journals, beaded portfolio bags, printed kanga bandanas, beaded Maasai bracelets and reusable coffee sleeves.

BLOOM: Is Whole Foods still the major buyer?

Wanjiru Kanuri: Yes, Whole Foods is a major buyer, but we also have a presence on Zazzle and in boutiques across the country.

BLOOM: How many women work in the Ubuntu Made factory?

Wanjiru Kanuri: Twenty-five women work full-time.

BLOOM: How does this change their lives?

Wanjiru Kanuri:
They find empowerment through full-time employment and entrepreneurial skills training. They go on to buy land, start local businesses, create savings accounts and build homes. They are able to access medical coverage for their families and send their kids to school.

BLOOM: Tell us about the Ubuntu Special Needs Centre.

Wanjiru Kanuri:
We have 50 full-time children ages two to 15. Their diagnoses include intellectual, physical and/or developmental disabilities like cerebral palsy, Down syndrome, spina bifida, autism and epilepsy. We advocate for early intervention and have children less than a year old who are already on therapy schedules.

BLOOM: When we did a story in 2013, your school was the only one available for kids with disabilities there. Has that changed?

Wanjiru Kanuri: We are still the only well-established centre for children with disabilities in this area, but we work closely with our partners, including the [government], special education professionals, the Sarakasi Trust, the Kijabe Hospital and Special Olympics Kenya.

BLOOM: How is disability viewed there?

Wanjiru Kanuri: Previously the attitude was bad and parents hid their children. But we have seen that changing, and people are having more positive attitudes towards persons with disabilities.

BLOOM: How has your program changed perceptions?

Wanjiru Kanuri:
Our inclusion events connect community leaders, the community at large and children with special needs to break through the barriers of stigma and lack of understanding. Through our advocacy and creation of awareness we have seen great gradual change.

BLOOM: When we last wrote about your program, there were many children on a wait list to get in. Is that still the case?

Wanjiru Kanuri: Yes. We have even heard of cases of people relocating here to Maai Mahiu so that they are able to access our service. We are working towards building a [larger] educational and therapy facility for children with special needs to be able to accommodate all of the children.

BLOOM: What is a typical day like for students?

Wanjiru Kanuri:
We’re open Monday to Friday. Days include basic class activities, daily living training, hand skills activities, therapy sessions, meals and play time, including nature walks and play therapy at the playground. We even have monthly excursions and other outdoor activities.

BLOOM: What’s the greatest challenge of running the program?

Wanjiru Kanuri: Finances. Eighty-five per cent of our families are not always able to pay to get their children to the school. We have in-home visits to alleviate this issue. Our team has a very strong fundraising arm and, outside our enterprise programs of Ubuntu Made, Café Ubuntu and Ubuntu Water, they work to raise funds to expand programs and foster more inclusion.

Visit Ubuntu’s shop to see the products available. These photos were taken by Chelsea Dee and generously given to BLOOM.

Thursday, June 22, 2017

Cartoonist draws about his life as Poppy's dad

By Louise Kinross

In 2015, British Telegraph cartoonist Bob Moran illustrated a heartfelt memoir about his daughter's birth with a brain injury. Called Father's Days, it contrasts how he imagined his new role as dad would go with the terror of seeing his newborn hooked up to machines and tubes. "I just didn't feel strong enough," he says, as an illustration of him lying prone on the floor after being sent home from the hospital appears.

The piece is packed with heartbreak and fear. That one line
"I just didn't feel strong enough"I'm sure has been said, or felt, by every parent of a child born critically ill or with disabilities. 

Poppy, Bob's daughter, is now three years old and diagnosed with cerebral palsy and epilepsy. Earlier this week Bob released a new video about the family's first trip, a cruise around the Mediterranean: Father's Days At Sea. It's a lovely look at how Bob's fears about Poppy's safety on the ship give way to seeing the holiday through her "cheeky, confident, life-loving" eyes. It, too, is a must-see.

Bob has agreed to do an interview with BLOOM, so stay tuned to read about what he's learned through illustrating his parenting experiences. 

Wednesday, June 21, 2017

Like gender, ability is more fluid than we think

By Louise Kinross

I was at a fabulous workshop at Holland Bloorview yesterday on how to create places that include and respect people who are lesbian, gay, bisexual, trans or queer (LGBTQ).

The most important thing is “to give people space to self-identify,” said Ashley McGhee, a specialist in education and training from 
The 519 community centre in Toronto. That’s done by asking a person what pronouns (he/she/they) they use to describe themselves. Then, Ashley said, affirm and honour the person’s response. 

We did some great exercises to better understand the difference between your sex (male or female, based on the anatomy you were born with); the gender you identify with internally; the gender you choose to express in the world; and your sexual orientation. Instead of being rigid, many of these things are fluid and change over a person’s lifetime.

We can talk to our kids about this and check in with them on how they identify.

The 519 offers a wide variety of programs for queer and trans families and parents of gender non-conforming kids.

“We need to challenge the dominant narratives about the way people are supposed to look, feel and move,” Ashley said.

I thought there were parallels between how we create an LGBTQ-friendly place and how we create a disability-friendly place.

We could ask youth how they describe themselves: do they take pride in the word disabled, or use person-first language, or use a reclaimed word, like “crip,” or have a unique way of describing their disability experience, or not use the word disability at all? Just like gender and sexual orientation, abilities are on a spectrum. It’s not a simple binary of “abled” or “disabled.”

But the most important thing I got from Ashley's presentation was that however a person describes themselves, we affirm and value them. We don’t value one gender identity or sexual orientation over another. We don’t value one ability or disability over another. 

“Labels are meant to help people better understand themselves, not to be used by others to categorize or stigmatize or 'other' the person, says Daniel Scott, Ronald McDonald Playroom coordinator and member of the hospital's Equity, Diversity and Inclusion committee. “It's about how people self-identify, and it's about those of us who don't identify [that way] making it our responsibility to try to educate ourselves.

Ashley suggested we might want to look, as an organization, at the personal information we collect, for example in research. “Is it really necessary to ask a person’s sex, which is asking them what anatomy they were born with?” What does it tell us if we record an F for female because of what we see, but the youth in front of us identifies as a boy?

The bottom line I got from Ashley’s talk was that identity can shift, but human value is a constant. A great message for our community.

Wednesday, June 14, 2017

'We don't want to be held on leashes'

By Jadine Baldwin

As a 17-year-old girl who has cerebral palsy, every day I encounter teens with a variety of abilities and disabilities. The Limited versus the Limitless!

Society tells people like me that we’re limited because of our disabilitiesmental or physical—and that because of what we’re lacking, we’ll never be able to live a full life. This can be disheartening for parents and guardians to talk about and process with their disabled children. For this reason, parents are afraid and unsure about how to support us when we become teens and even adults. They’re scared to let us “be free,” because all along they’ve been told to keep us close, or the world will eat us alive.

Parents don’t understand that just because we’re made differently from “normal” teens, doesn’t mean that we don’t want to experience life like normal teens. We want to go to the movies with our friends alone, we want to stay home alone, and we want to try the things we're constantly told we can’t do. We don’t want to be held on leashes. It doesn’t matter if we’re verbal or non-verbal, we can understand what it means to live a good, quality life.

We just need our parents and the ones we love to help us along the way.

I have a very close friend who’s my age and autistic. He’s super smart and funny and I feel so alive when he's in the picture. He and I have known each other since Grade 9. He understands me, and I understand him (like no one else does, as he says). Even though his parents have known him for 17 years, he tells me that it still feels as if they’re “newbies” sometimes. They know that he needs a simple and easy-to-understand structure in order to grasp this complicated world. Yet they still confuse him by putting too many minor details into a task or question, and that throws him off.

Sometimes, people don’t realize that simple is how everything begins. Simple love, simple feelings and then you gradually can start to think deeper. My friend’s parents are smart, my only advice to them is: Give your son a simple tree and he can make it grow into extraordinary things, all on his own. Just give him time and your support to let him know that you're ready to see the world through his eyes.

“I want to talk to you, Daddy...but the words won’t come.” That’s what it feels like to be a non-verbal child. Because they can’t voice their own opinion, you guys as parents have to speak for them. I’ve met so many parents with non-verbal children and they treat their kids so well—like actual human beings—not robots.

Although it’s great that you’re treating your child like a human being, I find it a little silly that in trying to make your child seem more than what society sees them as, you, in turn, make them feel less by focusing too much on society and not on them.

It’s hard to speak for your child if you don’t know how to stop talking and listen to them, instead. Parents, your children need to know that you are hearing them as much as you are fighting for them. Just listen!

For parents of children who don’t have a reliable communication aid, talk to other parents, and see what worked for their child, to give you motivation and inspiration. Don’t give up.

Being a child with cerebral palsy is great—if you don’t have parents that smother you! My Mom does exactly that! I bet every teen who has CP has experienced this in one way or another. Our parents think that we're little and can’t handle the big because that’s what many doctors have told them. So, they don’t leave you home alone for more than five minutes (especially if you’re in a wheelchair).

Some parents won’t let you go to sleep-away camps with other disabled kids until you’re 17 (my Mom)! They always think that people are out to get you. We love them more than life itself, but it gets so crazy sometimes. I always think, Mom, my friends are not murderers and if they were, I’d be dead already.

In my opinion, our parents forget how tough we are because sometimes we don’t look it. If your child has CP, please do not smother. Please don’t tell us that we can’t handle life, because we were built for it. Please let us live (a little more).

Dear parents of disabled teens: We appreciate you and love you! We aren’t telling you that you can’t worry about us. You’re supposed to. We’re simply saying that you need to support us with what our futures hold, not hold us back. We need to soar, but that doesn’t mean that we won’t come back home. We may need help along the way, but we need to explore. That’s what life is meant for, isn’t it?

Monday, June 5, 2017

Designs make wheelchairs a work of art

By Louise Kinross

Izzy Wheels is a business that sells designer spoke guards created by Irish sisters Ailbhe and Izzy Keane. Izzy uses a wheelchair. Growing up, she loved her wheels, but it bothered her that they didn’t reflect her personality and style. When Ailbhe was at design school, she was tasked with creating something to enhance the lives of people of people with disabilities. She and Izzy brainstormed, and came up with art-decorated spoke guards. After Ailbhe graduated, the women created a business. Ailbhe works at Izzy Wheels full time, while Izzy balances her university studies with part-time work there. BLOOM interviewed them both by e-mail.

BLOOM: What bothered you about wheelchair design in the past?

Izzy Keane:
The thing that bothered me before Izzy Wheels was that it was really difficult for me to visually portray to the world the positive relationship I have with my wheelchair. Until I put on my first pair of customizable spoke guards, my wheelchair looked like a lump of metal made in a hospital. To me it has always been so much more than that. I’ve always wanted the opportunity to make my chair look nice, as a sign of respect to it. Now at first glance people know that I love my wheelchair.

BLOOM: Do spoke guards have a function?

Izzy Keane:
Spoke guards protect the wheels of a wheelchair from being damaged and now, thanks to Izzy Wheels, they act as a means to enhance a wheelchair user’s outfit.

BLOOM: How did Ailbhe come up with the idea of creating stylish spoke guards in her art program?

Ailbhe Keane: My sister Isabel has been in a wheelchair all her life and growing up it really frustrated her that she didn't have a way of customizing it. When I was in my final year in the National College of Art and Design, I was offered the opportunity to undertake a self-directed project to 'Enhance the lives of people living with a long term, lifestyle related health condition.’ As soon as I came across it, I knew that it was the perfect opportunity to incorporate my knowledge of my sister’s disability into my work and Izzy Wheels was born! After I graduated from college I decided to turn my project into a business.

BLOOM: What are the spoke guards made of and how is the design put on? Are they for kid and adult chairs?

Ailbhe Keane: The spoke guards are made from plastic with very high quality finishing so that they are very easy to wipe down and clean. They have velcro straps at the back to fasten the spoke guards to the wheels of the wheelchair. Yes, the product comes in three different sizes to cater to children, teenagers and adults.

BLOOM: How do you find artists to design them?

Ailbhe Keane: As a graphic designer myself I have a lot of friends and valuable contacts in the art world. I spend time looking through artists’ previous work to see if I feel that it fits in with the style and ethos of Izzy Wheels. We also get messages from designers all over the world who have seen our work and want to be part of our upcoming collections.

BLOOM: What is the range of cost? Do you ship internationally?

Ailbhe Keane: Yes we ship internationally. The spoke guards come as a pair, one for each wheel and cost between €119 (CDN$180) and €139 (CDN$211).

BLOOM: What is your best-selling design? Does Izzy have a personal favourite?

Izzy Keane: All of our designs are extremely popular. Currently our best seller is the rainbow mandala. Personally, I don’t have a favourite design, as each of the sets coordinates with a different outfit from my extremely colourful wardrobe!

BLOOM: How do you feel differently when you’re out wearing these spoke guards?

Izzy Keane: The spoke guards make me feel extremely confident because when I meet new people my cool wheels are a great conversation starter.

BLOOM: Does the public have a different reaction to your wheelchair when you have the designs on?

Izzy Keane:
Definitely. Having my Izzy Wheels on is like telling people that they don’t have to be afraid to acknowledge my disability. It diminishes any potential awkwardness that another person who is inquisitive about my disability may feel. People now are more at ease when asking questions about my disability.

BLOOM: Is Izzy Wheels a business? I noticed it said you donate to charity.

Ailbhe Keane: Izzy Wheels is a business as well as a social enterprise. We give donations from all of our sales to disability charities around Ireland. The proceeds from our ‘Roll Models Collection' are donated to the Irish Wheelchair Association.

BLOOM: What are your plans for the future? Do you both work at Izzy Wheels full-time?

Ailbhe Keane:
We are creating a global fashion brand for wheelchair users. Our plan is to expand our business worldwide. We already have a lot of exciting surprises being launched in the near future. I work in the business full time and Izzy works in the business part time. She is also in university studying sociology and politics, French and law.

BLOOM: Why are so many disability-related products ugly?

Izzy Keane:
I think the reason why so many disability products are ugly is because when they’re being designed all of the energy is put into their functionality and their aesthetic is forgotten.

Izzy and Ailbhe won first place in the 2017 Accenture Leaders of Tomorrow awards.

Thursday, June 1, 2017

Mindfulness cuts parental stress, depression

By Louise Kinross

What would best support parents of adult children with developmental disabilities who’ve left school and fall into a black-hole of services to fill their day?

A six-week mindfulness group that taught parents to pay attention to their feelings and thoughts in an accepting, non-judgmental way, or a six-week group that gave parents information and support on how to get services for adults, many of which are wait-listed?

A fascinating study in the Journal of Autism and Developmental Disorders compared the two, and found parents in the mindfulness group reported significant drops in depression and stress, while parents in the information and support group did not.

“We forget that stress for these parents accumulates over time, and the demands become bigger as the child becomes an adult and service gaps are more extreme,” says lead investigator Dr. Yona Lunsky, a clinician scientist at CAMH who partnered with Developmental Services Ontario (DSO) and Community Living Toronto.

Yona worked with DSO to recruit parents who had applied for services into one of two randomized groups. The parents ranged from age 37 to 81. Their adult children were aged 16 to 40, with autism or other developmental disabilities. One-quarter of the adult children didn’t have anything to do weekdays during the study.

“The study looked at parents who came to DSO to access services, and who were focusing on their kids as opposed to themselves,” Yona says. “We wanted to see if we could teach a skill that doesn’t change the child’s situation, but changes how parents view and deal with it.”

Parents in both groups met weekly for two hours for six weeks. In the mindfulness group, they learned practices like the body scan—where they feel each body part, from toes to head—a three-minute breathing exercise, and a loving-kindness meditation. They also learned how to be more mindful with their child—for example, observing something about their child that brings them awe.

The goal was to teach practices that parents could use on the fly while juggling their many responsibilities. ”The demands in their day mean these parents are constantly pulled away from being aware of themselves,” Yona says. “We encourage them to use their senses to come back to themselves and pay attention to how they feel.”

It could be taking a moment before they get out of their car, or while sitting in a waiting room. “It’s just as important to notice ‘I’m upset, I’m tired, I’m exhausted’ as it is to notice ‘I feel good,” Yona says.

Self-compassion is a big part of the practice. Parents tend to have empathy for their children or the experience of other parents, “but they don’t take the time to have that same compassion for themselves,” Yona says.

“We’re teaching them how to be in the present moment, and how to be aware of a thought or a feeling without judging it. Perhaps today you notice some tightness in your chest or negative thoughts or feelings about your child: ‘I’m really frustrated.’ But if you’re not aware of that emotion, you can’t change your interactions or choices to help yourself. If you’re aware that you’re feeling frustrated, perhaps you pause, take a break, drink some water or do something else to take care of yourself. Maybe you ask someone to step in to help. It’s the idea of the parent putting on an oxygen mask in the airplane first, before putting it on their child.”

The parents who met in the information and support group listened to speakers on topics like adult day programs, residential care and mental-health services, person-directed planning and parent self-care.

Child care was provided for both groups and parents had a break for tea and a chat in the middle of each session.

Parents in both groups said the interventions were beneficial and they liked meeting parents in similar situations. Two years later, some parents from both groups continue to meet.

However, on a 14-item measure, parents in the mindfulness group reported significant reductions in depression and stress which weren’t seen in the information group parents. “Parents who did the mindfulness had an improvement from before to after, and they maintained that improvement 20 weeks later,” Yona says.

“We think it’s because they’re learning a skill that over time can help reduce stress and improve mood, and it’s not driven by success in your environment. If we feel happy because our child achieved ‘x,’ then our happiness depends on the child. But the issues these parents face—whether accessing a service or dealing with a behavioural or mental health problem in their child—don’t necessarily have immediate solutions.”

In the paper, the authors note that mindfulness “moves away from a focus on problem-solving to instead offer skills to cope with situations that are difficult and may not improve very quickly.”

Yona says next steps in the research include looking at virtual and other ways to deliver mindfulness training, what the best intensity of the intervention is, and how the makeup of the group influences outcomes.

You can contact Yona at

Wednesday, May 31, 2017

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.