Raising a disabled child in an abled world takes a toll

By Louise Kinross

Today is Bell Let’s Talk day and we want to join the dialogue by talking about mental health and parenting children with disabilities.

Over the last decade, studies show that parents of children with a range of disabilities like cerebral palsy, autism and Down syndrome have higher rates of depression and stress than other parents.

This 2013 Australian report provides a good overview of our unique mental health challenges: Enhancing support for the mental health of parents and carers of children with disability.

Consider some of these contributing factors. 

Parenting a child who is devalued and marginalized in our culture can be heartbreaking.

Parents of children with disabilities often have to fight to have their children included in everyday activities and regular school programs. Advocacy is time-consuming and emotionally exhausting. It's sad when your child struggles to make friends.

Parents may not be able to get the therapies their child needs covered publicly. Raising a child with a disability costs more. Often times, one parent needs to be at home.

Some parents have experienced many traumatic, life-and-death situations with their child. Others have been with their child through dozens of painful surgeries and gruelling months of rehabilitation.

Lack of home-care nursing and the need to care for a child around the clock can be physically exhausting. See Parents of ventilated kids risk own health due to sleep loss.

It’s sad when many people don’t delight in your child the way you do, and see their beauty, value and wholeness.

Recently, we’ve seen some exciting studies about interventions that can reduce stress and depression in parents like us. For example, in the last year we’ve written about three CAMH studies showing the benefits of mindfulness, self-compassion and acceptance and commitment therapy. The most recent: Accepting emotions reduces depression and stress in parents and Self-compassion may fuel parent resiliency. In 2014 there was this Pediatrics study: Peer-led groups treat distress in parents of kids with autism.

Holland Bloorview's Dear Everybody campaign aims to help the public understand the experiences of disabled children and their families, and to reduce stigma.

In light of Bell Let's Talk, I asked parents on our BLOOM Facebook page this question: “What would you like the world to know about mental illness and parenting children with disabilities?”

Here are some of the responses (edited for space).

Post-traumatic stress disorder is now recognized in first responders. Living through repeated life-and-death situations with your own child takes a toll.

The world should know that we worry constantly and that it can be exhausting. I love our daughter to death and she brings us so much joy, but the stress and worry about her future can be debilitating. Except—it actually can’t be, because you just carry on. You have no choice. I worry that this reality takes a toll.

Hopes, dreams and fulfillment for our children are waylaid for doctor appointments, constant phone calls about denied necessities, hospitalizations, Emergency visits, sleepless nights, loneliness, lack of freedom, but most of all guilt. Did we do enough? What did we forget? Are we paying enough attention? The list is endless, but at the top of that list should be FEAR. Who will be there to carry on for our child when we can’t?

I have never gotten over the trauma of our daughter’s early birth and the subsequent turn she took after birth that led to her disability.

We may always look like we have it together, but placating us with ‘You seem to be very strong’ pushes us further into the dark and away from help. We need proper assessment.

Don’t leave it till we fall off the rails. Studies show that parents like us have higher rates of depression and anxiety than other parents.

I took a physical for insurance and was asked ‘Why are you on an anti-depressant?’ I simply stated: ‘I’m a special-needs parent and I’m always advocating, praying, teaching, learning, and I must cope somehow.’

There is the everyday worry I have for her health and wellbeing, both physical and mental. I constantly worry about what happens to her in the future. Will I be well enough to take care of her, or will she be able to live a somewhat independent life? Oh, and let’s not forget the worries of possible abuse of my girl—physical, mental and sexual. Our lives are mentally exhausting!

Please leave a comment about your experiences with depression and anxiety and strategies you use to help yourself stay healthy.

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Stars for children who die, and those who remember

By Louise Kinross

In 2012, Connor McHardy, 7, “got his star,” says his mother Mindy. It’s one of 370 glass stars on the wall in the playroom at Roger Neilson House in Ottawa, a hospice for children named after the NHL hockey coach.

“It’s the idea that although a child has died, his or her star shines brightly at Roger Neilson House, which provides comfort to many,” Mindy says. “It’s one of those spaces you ‘feel,’ and many find it hard to describe. It’s a definite feature both in beauty and meaning for families, staff and volunteers.”

Families whose child has died are invited to come back to the hospice for a ceremony that involves revealing the child’s star.

“It’s important for families to know that we honour and love their children and maintain that legacy for them,” says Megan Wright, the hospice’s executive director. Almost 20 years ago, Megan was operations manager for two units at the old Bloorview site of Holland Bloorview.

“The wall is beautiful and powerful and impactful,” she says. “Many families come back often, and some come back on birthdays or on the anniversary of their child’s death. Roger Neilson’s star is at the very top. Roger is a big part of our history and legacy and it’s like he’s looking over the children. It’s helpful for staff to know their work has meaning long after a child has died.”

After their child's death, families continue to come to Roger Neilson House for grief counselling and other supports. “The star wall is an important connection to the place where they spent the most time with their child, or the last few minutes with their child.”

Some parents come to monthly drop-in groups years after their child died, Megan says. “After the death of a child there is a secondary loss to the people in the organizations that were so much a part of the child’s life. We always invite our families to come back.”

Roger Neilson House is located on the property of the Children’s Hospital of Eastern Ontario and works with the CHEO palliative care outreach team.

Mindy took the photo below the day her son Connor's star was added.

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'I was afraid to make a mistake, so I hid behind the camera'

By Louise Kinross

Sweet Dreams for Chiyo is a film that follows the Ehara family when their toddler Chiyo is diagnosed with Type 1 diabetes. Parents Rhiana and Kaz are filmmakers, so Kaz gets behind the camera as the family—which includes Cai, then three months—adapts to checking Chiyo's blood sugar around the clock and counting every carbohydrate she eats. Missing a hypoglycemic episode—when blood sugar dips dangerously low and the person requires immediate sugar or a high-carbohydrate snack—could be deadly. The film follows the family over a six-year period and airs on CBC on Sunday, February 4 at 9 p.m. BLOOM interviewed Kaz about his role as dad and filmmaker.

BLOOM: Why did you initially begin filming your family when Chiyo was diagnosed?

Kaz Ehara: I think this was my initial coping mechanism. When something unknown happens to me or my family, I often capture it by image. I trained as a photojournalist. I have a Japanese family and when my grandfather developed dementia I started filming as a way to understand what was happening more objectively. I discussed with Rhianna capturing our daily life, and I think we also used the filming sessions as an outlet to express our fears and feelings. A lot of the interviews were conducted at night after the kids went to bed.

BLOOM: We quickly see the strain in the film of monitoring, weighing and recording everything Chiyo eats, and late nights where Rhiana is still awake at 3 or 4 in the morning. I think it’s common in families with chronic conditions for the mother to jump in and become the expert and do all of the health-related tasks, and it’s sometimes harder for dads to find their role.

Kaz Ehara: Rhiana was dealing with the daily treatments so beautifully, and she was definitely comprehending the situation much better than I was. I started losing some confidence, especially in the beginning. With Type 1 diabetes, the stakes are high. If we miss one check at night, it could be fatal. The fear was there. I think mainly I was afraid to make a mistake, so I hid behind the camera.

I think I said in the film that, without realizing it, I started to abuse my position. I was obsessively filming, because that became my coping mechanism.

BLOOM: Well, I think that’s understandable, as it was something you could do well.

Kaz Ehara: I started adding more pressure on Rhiana and now I know it was wrong. I was a filmmaker, and if I’m filming, I’m working. That’s how I justified my actions when I wasn’t supporting her enough.

When Chiyo was born, I changed diapers and fed her and was able to be independent with her. I would compare that with my childhood in Japan with my father, who left for work early in the morning while we were asleep. Because I’m self-employed, my hours are much more flexible. In comparison I thought I was doing really well.

But when Chiyo’s illness hit it put a lot of stress on the family. I didn’t realize the family was close to falling apart. When Rhiana would cry for help, I couldn’t hear her voice, because I was too busy listening to my own inner voice thinking ‘I’m also tired and I’m also working hard.’ I would keep filming, but without any desire to actually watch it.

One day my friend asked how things were going and I decided to watch some interviews. They were emotional and capturing Rhiana’s feelings. It was almost like watching someone else’s life on the screen in a very objective way. I had no baggage attached to me. My inner voice wasn’t there, and I suddenly realized ‘Oh my gosh.’ I felt a pain. That was the turning point. I wanted to change.

BLOOM: Did you or Rhiana have contact with other families whose children have Type 1 diabetes? I don’t recall that in the film.

Kaz Ehara: We had some mixed experiences with that. Our primary reason to get in touch with parents in our community is to get the latest information on technology. We decided that to keep a happy family, we couldn’t let diabetes becomes the main priority in our life. If we started fixating on diabetes care we would neglect our relationship as husband and wife, and as parents. We had very limited mental space in our brain and, for us, we needed some distance.

BLOOM: So you didn’t want diabetes to become the only focus.

Kaz Ehara: I think the word has a strong power and if you talk about certain things over and over again, that becomes part of your identity. We didn’t want our daughter to feel like her identity is with diabetes. We wanted to focus on who she is, and the diabetes is always there to come along with her. We never neglect diabetes or ignore it. But we needed to keep a healthy distance for our sanity, and so we can focus on the bigger picture of keeping our family as happy as possible.

Maybe we are unique in that way. We didn’t want to be 'diabetes parents.' We wanted to be parents first. We have another son who doesn’t have diabetes and we needed to have a bigger perspective than that.

Rhiana was very insightful in that her parents got divorced, while my parents stayed together. I didn’t know the warning signs for divorce, but she said family begins with a strong healthy couple as a foundation. If we neglect our relationship, then the family shakes. When our family was almost falling apart, I was only caring about my sanity and making excuses. I’d say: ‘We don’t have time to go out for a bite’ or ‘We can’t hire a babysitter that we can trust.’

Since then, we started increasing our comfort zone, and suddenly we discovered a babysitter who has Type 1 diabetes. And we started to see that when we changed our attitude, things we thought weren’t possible were. Recently our family went to Mexico for two weeks backpacking in a rural area. It took a lot of preparation, but our world is widening again.

I think I didn’t want to be part of a parent group that was focused only on diabetes.

BLOOM: In one of the scenes in the film, Chiyo needs her insulin pump changed right away—rather than at night when she’s asleep. And she’s crying and hides under the table and begs her mom not to do it. Even your dog Ruby looks really upset. How do you manage those moments when you need to do something that hurts Chiyo, but that in the long-run is necessary to her health?

Kaz Ehara: I was afraid and I had no idea what to say to comfort her. I think I was hiding behind the camera. And even I looked at my little son that day and observed he was much more of a brave participant than I was.

BLOOM: Do you and Rhiana do anything specific to cope with stress?

Kaz Ehara: We try to exercise. Now, I’m able to be independent when it comes to the diabetes care, so we try to give each other space as much as possible. For example, Rhiana went to Guatemala to see her friends who were teaching there. And I went to Japan. Our coping mechanism is to see the world as bigger than ours. We had to come to the realization that what we were dealing with is not the end of the world.

Another thing we try to do is not to fixate on doing everything perfectly. There are over 100 factors that can affect blood sugar, including hormones and emotions. We can’t be reactive to each little incident, but try to see more of the bigger picture. We need to tell each other we’re doing a good job.

BLOOM: The film covers diabetes from a sibling perspective. We can see how knowledgeable Cai is about his sister’s care, and how he often tries to comfort her. But we also see him feeling sad and resentful because Chiyo gets candies as ‘medicine,’ or seems to get more attention than he does. Is there anything you do to meet Cai’s unique needs?

Kaz Ehara: Part of our strategy is that we try to separate the kids as much as we can. For example, we take them out separately, so Cai can have some free time and space separate from the disease.

Rhiana will also ask Cai: ‘Are you tired of being on our team?’ Because we ask him to be on our caregiving team and we need extra eyes to support Chiyo. But before being part of a caregiver team, he’s a child first, and we want to make sure we don’t screw up that priority.

BLOOM: Later in the film you take the night shift and are up till 3 in the morning because Chiyo’s blood sugar is very low.

Kaz Ehara: Usually I took the morning shift and Rhiana stayed up late, and that’s partially because she was a night owl to begin with and I was more of a morning person.

The problem is that sometimes you can’t bring Chiyo’s blood sugar level to the point where you feel comfortable to sleep until 3 or 4 in the morning. We have no idea why the blood sugar is acting this way, but we can’t leave it. If it’s too high, you worry about long-term complications and if it’s too low—this could be fatal.

It feels lonely when you’re the person most responsible. We’ve given up on the idea that it will be easy at some point. We have to accept that it is what it is. Acceptance is very key. In the early days, we kept changing technology with the hopes that it would make things easier. But we only got more data, and not the ability to analyze the data. Too much data is overwhelming, and just makes you fixate more on diabetes.

BLOOM: There’s a moving scene where Chiyo is going off to school carrying a large yellow box for her needles. And Rhiana talks about how she feels like a freak when she’s the only mom who has to stay at birthday parties to count Chiyo’s carbs. How do people who don’t understand diabetes respond to you out in the world?

Kaz Ehara: In the beginning, birthday parties were very difficult. We’d have no idea what food was going to be served, how many carbs were in each food and also, people usually serve buffet style, so we didn’t know how many portions of the items our daughter would eat. We could have talked to the parents before the party, but we didn’t want to be in the way. Rhiana created an art out of carb counting and now she can get in and out quickly.

In general, people have responded very nicely to us. We go on all of Chiyo’s school trips because the nurse can't, and we see how the other kids are helping and are curious about her condition. Chiyo’s friends are very empathetic.

One of the things we worried about is that Chiyo is in a portable outside the main school building. We worried about when she might have to walk to the bathroom, if she got weak. The school created a special buddy system so that whenever they go out of the portable, they go in twos. We are very fortunate with the people around us.

BLOOM: Are there ways that Chiyo’s diabetes has made you a stronger family?

Kaz Ehara: I think we definitely built up a resiliency and became stronger as individuals. I think we also became more sympathetic to others who have different conditions. We talk with our kids about how everyone has something to deal with. We’re not the only ones facing a challenge, and we can help other people. Overall we became stronger as a family because we were dealing with the same challenge as a team. The more experience you have dealing with conditions outside your comfort zone, the more you gain confidence.

BLOOM: What did you learn by filming the movie?

Kaz Ehara: What I learned most was that in order to see things clearly or objectively, I had to be very flexible about the way I’m thinking about myself. One of the things I try now, when Rhiana needs to talk about things, is to be almost silent inside my brain. Instead of trying to understand in my mind, I’m trying to feel her pain.

The biggest thing I learned was that she doesn’t need my advice. She’s the one understanding her situation and her coping mechanisms, but she still needs someone to feel the same pain, or share the experience.

By looking at the footage, I could see that whenever she said something to me, I would say ‘You should do this.’ Rather than giving her reassurance—‘Yes, of course you can do that’—I was giving her opinions.

So now I try to clear my mind, almost like a white canvas, so I can be vulnerable to feel her emotions. Rather than listening to my brain analyzing and coming up with a solution, I try to create a field of empathy towards her.

That’s what I learned from looking at what I was doing in front of the camera.

BLOOM: What do you hope viewers take from the film?

Kaz Ehara: I hope fathers who have a child with a chronic illness, who maybe feel their contribution isn’t enough, that they can project themselves into me and feel the mistake I made. I think mothers in our society carry much more expectations and stress than fathers, so hopefully this film will open the eyes of fathers a bit and make them think about what kind of a father they want to be.

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'We are hungry for neat, tidy stories.' Grief 'is much more messy'

By Louise Kinross

Last year, several parents whose children had died came to Holland Bloorview staff with an idea: They wanted to hold an annual celebration of life at the hospital to recognize their children and to develop supports for bereaved families. “When you walk through the door for the first time after, there’s a sense that you don’t belong anymore,” recalled Bruno Geremia, whose son Matthew died three years ago. “We live in a culture that doesn’t want to talk about death, especially if your child is really complex or fragile.”

Since then, the group hosted its first celebration of life event in Spiral Garden and offered a workshop on coping with the death of a child with Andrea Warnick. Andrea has worked as a pediatric oncology nurse and director of Camp Erin, a bereavement camp for kids. She now works as a grief therapist in private practice with children and adults. BLOOM interviewed Andrea about what it’s like to grieve the death of a child, and how to support parents and siblings.

BLOOM: What would be helpful for our parents to understand about grief?

Andrea Warnick: I think we often simplify grief. A lot of my job is helping people understand that it can involve such a wide range of emotions, and conflicting emotions.

For example, parents may feel heartbroken and relief at the same time, particularly if they’ve been caring for a child for a long time, or if they felt the child was suffering.

We don’t talk enough about guilt. For most of the people I work with aged 10 and up, guilt is often a part of the process. They may feel guilty that they didn’t do things with the person earlier, or that they were somehow responsible for the death. If the death resulted from a car accident, the person may think: ‘If only I had called five minutes earlier, maybe they wouldn’t have been in the accident.’ Perhaps the last time they were together they had a fight.

It’s not uncommon for adults to feel guilty the first time they laugh after their child has died, or the first time they realize they haven’t thought about the child momentarily. I always want to validate that it’s completely okay to still feel gratitude and joy and 'do' sorrow at the same time.

I find children are better able to balance joy and sorrow. They could be at a sibling’s funeral and be devastated one moment, and the next they’re running around with their cousins and having the time of their life.

BLOOM: Do you do a specific type of grief therapy?

Andrea Warnick: No. I’ll often use elements of narrative therapy, but what I do wouldn’t fall under one category. As a pediatric oncology nurse I was on the front end of things as kids were dying and I got to know grief in families really well. I also came to understand there was a massive gap when it came to supporting kids who are grieving.

I like to emphasize that grieving is natural and rooted in our humanness and it’s not pathological. For the vast majority of people, grieving is healthy. Unfortunately, we live in a society that’s death-phobic, and uncomfortable with grief and intense emotions in general.

As a result, families often receive well-intended but misguided advice. For example, it’s not uncommon, a few months after a child has died, for families to feel that people are suggesting they need to ‘move on’ or ‘get over it.’ We have to throw those sayings out the window.

Grief is not about getting over your child and it’s not about forgetting your child. What we want to do is help people figure out how they can stay connected to the person that died in a healthy way.

BLOOM: How do you do that?

Andrea Warnick: By talking about the person. If you’re supporting someone whose child died, let them talk about the child. Don’t tiptoe around talking about her. What often happens is people think ‘I don’t want to bring up the child’s name, because it will make the parent sad.’ What parents tell me is that they're terrified that people will forget their child and stop talking about them.

I always encourage supporters to ask if the person wants to talk about their child. Use the child’s name. You can say ‘This is one of the memories I have’ and share a memory. If you never met the child, you could say ‘I wish I got to meet your child. Can you tell me about him?’

BLOOM: Do parents of children who had disabilities or complex medical problems ever feel that people minimize their grief?

Andrea Warnick: Families where there’s been a prolonged illness, or where a child had a condition their entire life, tend to already be dealing with society underestimating the attachment and importance of the relationship. That gets magnified in death. Often the assumption is that the parent gets their life back, and the death is minimized because it wasn’t a healthy child. I work with a lot of families who are contending with that, on top of all the other complications that come with grieving in our society.

BLOOM: What I’m hearing from you is that grief is individual and personal, and also, that there isn’t an end-point.

Andrea Warnick: We are hungry for neat, tidy stories where we can package things in a linear way. Many people who come in to see me ask ‘How can you help me get to where I need to go?’ Grief doesn’t break down into Elizabeth Kubler-Ross's five stages and an end-point. It’s far more messy than that.

Grief is a process of learning how to live with loss. For most people, the feelings won’t always be as psychologically intense as they are at the beginning. Many get to a point where they learn how to live with the heartbreak in a way that still allows them to experience joy and gratitude.

BLOOM: So it’s about learning to live with pain.

Andrea Warnick: A lot of families come to a point where their pain isn’t as acute. But it’s the missing of the child—of the life the child led and the unlived life—the time they didn’t get with their child, or what their hopes were for the child’s future. People often get the idea that they have to hold onto the pain in order to hold on to the child. A lot of my work is helping them get to a place where they can stay attached to the child, but they don’t have to hold onto the pain.

BLOOM: So pain isn’t a marker of the degree of their love. How long do families usually come to see you?

Andrea Warnick: Sometimes a family comes in just for one or two sessions. They only need validation that they’re on the right track, and that what their gut is telling them is right. I validate for them that we live in a grief-illiterate, death-phobic culture, and that grief is not about ‘getting over a child.’ Sometimes they may see me for years, or not see me for years and come back.

Grief can come and go, and grief bursts can happen for years.

BLOOM: What is a grief burst?

Andrea Warnick: It’s when you’re going about your day and something happens, and a wave of grief washes over you and it feels very intense, like you’re right up in those early days. It’s totally natural, and it happens to everybody. We just don’t talk about it enough.

A parent may be walking through their house and come across something of the child’s that she wasn’t expecting, and it’s a trigger. Or sometimes we don’t know where a grief burst comes from.

Often times families feel as though they’re grieving ‘wrong,’ or that it shouldn’t be this hard. Families need to know that grief bursts are totally natural. As time goes by and they process the death, they may get further apart, but they still come every now and then.

BLOOM: I guess the problem is that we fear grief. We're afraid it’s going to pop up, or that we're going to get consumed in it.

Andrea Warnick: Often, as adults, we’re hesitant to feel the depths of our sorrow. We’re a society that’s so busy. I often come across a dynamic where parents keep themselves very busy, or let themselves feel some pain, but hold the intense sorrow at bay. They can’t see the utility of experiencing it.

My job is to help them understand that feeling emotional pain and longing and grief is actually, in the big picture, going to serve them well. I encourage them to find the time and make space for that. Often it’s when they’re in the shower, or in the car listening to music.

Of course we all feel things to different depths and there isn’t a right degree.

I help people learn that they have the capacity to feel deep sorrow, and that they’ll still be able to get up and continue on with their day.

Teenagers may be afraid that they’ll be sucked down into a black hole. There aren’t any absolutes, and there are situations where people can get stuck. But for the vast majority of people, they can feel extreme sorrow and not get stuck in it. I help people to gain the capacity and confidence to know that they can go to these places, and be able to process death in a healthy way.

BLOOM: I know that the families who started the supports for bereaved families here want their children to be recognized and remembered in a more formal and ongoing way.

Andrea Warnick: The most important thing is that death is acknowledged. Many pediatric hospices have a memory book that everyone passes when they come in. I was recently at the Roger Neilson House in Ottawa, and there was a wall with the names of children who had died. It's called The Wall of Stars.

BLOOM: Several years ago our beloved therapeutic clown Jamie died of a brain tumour, and some inpatient parents asked that their children not be told. This created a very difficult situation for the remaining clown, Helen, who had to field questions from children.

Andrea Warnick: A lot of this is rooted in our death-phobic culture. Parents think ‘I don’t want my children to know, because then they’ll be upset.’ What they don’t realize is that it’s far scarier for a child when a beloved therapeutic clown has gone missing, and no one is saying what’s happened, but people seem upset.

In a situation like that, I would do an education seminar with the parents to reassure them about why it’s important to be honest with children and to use correct language, rather than saying ‘he passed away’ or ‘he is no longer with us.’ I would say: ‘He died from a brain tumour and it isn’t anybody’s fault, and it’s not something you can catch.’

BLOOM: Is talking to children something you addressed in your workshop here in December?

Andrea Warnick: Yes. I wanted to give parents the language to talk to their surviving kids. These children need a narrative if someone asks ‘What happened to your brother?’ They need to have a response, whether they’re comfortable saying ‘He died’ or ‘I don’t want to talk about it.’ I want to make sure the child has that language in their back pocket.

I always use the word ‘die’ with children. When we skirt around it with euphemisms, it’s confusing for kids.

BLOOM: How do you suggest parents explain what death is?

Andrea Warnick: I encourage parents to begin with talking about the physical part. So I say: ‘Death is when the body stops working, and will never work again. And the body doesn’t feel anything anymore.’

Oftentimes, parents don’t want to explain certain things—like cremation. But it’s very important.

Quite often, parents fall into the trap of thinking ‘I’m not going to explain death physically. I’ll give them an existential explanation, like he went to heaven.’ That is very confusing for kids, who think concretely.

I encourage parents to start by explaining the physical aspects of death to children, and then introduce their beliefs once the child has demonstrated an understanding of what happened physically.

BLOOM: What if as a parent you don’t have a belief about what happens to a person, separate from the body?

Andrea Warnick: It is okay to say you don’t know! 

I often have parents tell me: ‘I’m saying she’s gone to heaven, but I don’t know if I believe in heaven.’ 

Kids as young as three, where English is a first language, tend to understand the word ‘mystery,’ so it's a great one to use in these situations. Historically, we've lived with a lot of mystery, and this is a unique time in that if you don’t know the answer to something, you just Google it. It's okay to explain to kids that there are limits to what we can understand as human beings. So in these situations, I coach parents to explain that when it comes to the part of a person that is not the body, it's okay to say: ‘We don’t know what happens, and it’s a mystery.’

A great book for kids aged four to eight years old is When Dinosaurs Die. At the back of the book, they share a lot of different belief systems. It’s good for young children to learn that people believe in different things.

Canadian Virtual Hospice just released a whole website called Kids Grief which I contributed to. It has three modules on how to talk to children and youth about death and dying, as well as webinars and other resources.

Any child in Toronto whose sibling is dying or has died can access free counselling through Dr. Jay Children’s Grief Centre. And Camp Erin, which is a weekend camp for kids, is totally free.

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Virtual reality may help kids with autism adapt to new situations

By Louise Kinross

Many of us have less than pleasant memories of taking the bus to school or summer camp. But for children with autism, a noisy, unpredictable bus can be particularly anxiety-producing.

That’s why researchers at Holland Bloorview are working with film company Shaftesbury to create a virtual reality experience that helps desensitize children with autism before they hop on the bus.

They’ve already rented and filmed a school bus to make their scenes as realistic as possible.

“There aren’t a lot of studies that look at the safety and efficacy of virtual reality in children with autism,” says Holland Bloorview scientist Azadeh Kushki.

Azadeh hopes to start a usability study involving 30 children with autism aged eight to 18 in February.

“We’re going to look at children's physiological responses to identify anxiety triggers and work on gradually desensitizing them to their individual triggers.” It could be engine noise, a change in route, the sound and sight of an ambulance, or other children misbehaving.

“The good thing about virtual reality is you can adjust the difficulty of the situation,” Azadeh says. “So we can change the level of noise, the number of kids, or the amount of time a child waits for other children to board the bus.”

Shaftesbury, which produces the Canadian drama series Murdoch Mysteries, approached Azadeh and her team with the idea. 

“About two years ago we started listening to clinicians and asking what advanced media products we could create for them,” says Ted Biggs, vice-president, Convergent/Technology at Shaftesbury. “We had developed an app for our TV show The Moblees that ended up increasing active play in kids up to 21 per cent. Conversations with Azadeh, her team and our clinical partners in the U.S. led us to believe that this [new virtual reality] project could really help people and families dealing with autism.”

If successful, the school bus could be the first of a number of virtual experiences created to help kids with autism adapt to unfamiliar situations.

“This is a good example of knowledge translation from the academic world to industry,” Azadeh says. “We’re giving them the tools to create, and support the feasibility of, their product.”

The project is funded by the Ontario Centres of Excellence and the Natural Sciences and Engineering Research Council of Canada.

Study results are expected at the end of the summer. 

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Medicine is 'ultimately a humanistic and human endeavour'

Photo by Julia Soudat for U of T News

By Louise Kinross

Last April, Dr. Arno Kumagai became vice-chair in education for the Department of Medicine at the University of Toronto. He’s an endocrinologist from the University of Michigan who studied the molecular mechanisms of diabetic complications before turning his attention to medical training. At the University of Michigan Medical School, he developed a course that paired students with patients for regular visits at their homes, to hear firsthand what it means to live with a chronic illness. He continues to run a small clinical practice as a diabetes 1 specialist. Dr. Kumagai is giving a keynote presentation at Holland Bloorview’s Teaching and Learning day on March 8 called We Make The Road By Walking: Stories, Dialogue and the Possibilities of Care. BLOOM interviewed Dr. Kumagai about how stories can influence care.

BLOOM: In your education role at U of T, you talk about the importance of the human elements of medicine.

Dr. Arno Kumagai: Because we deal with people, medicine is fundamentally an ethical activity. We have to take into consideration that we’re dealing with another person with a background, personal values and relationships, and we need to have that first and foremost in our mind at all times. Often, it’s easy to forget that when we’re looking at numbers and physical or physiological processes, and how sometimes they can go wrong, or cause issues with function.

The bottom line for me is that yes, medicine involves science, but it is ultimately a humanistic and human endeavour. Where we often go wrong is when we treat other people as objects. We assume we know who they are, and what they want, and how they would prefer to live their lives. By making assumptions, we may be completely wrong, and we impose our own values and perspectives, without asking ‘What is it that’s important to you, and how can I help you?’

BLOOM: I understand you’re talking about the importance of stories at our Teaching and Learning Day. How can stories influence care?

Dr. Arno Kumagai: In teaching medical students and physicians in training, stories have a really powerful educational role, but not only that, they have a very powerful human role. Stories are human beings’ most effective way of communicating the meaning of experience. The way we transmit meaning from one person to another or one generation to another or one group of people to another is through storytelling.

In patient care, doctors tell each other stories about patients using a specific type of language that is very different from the story that a person with a chronic illness would tell about themselves. The patient’s story may be unrecognizable to the clinician, and the clinician’s medical history may be only vaguely recognizable to the person who actually experienced it.

Often times, physicians see things only in terms of impairment of function, but it’s really the stories of the obstacles that are encountered in society and daily living that they need to hear. I work with people who have diabetes and, as a result, have disabilities, and it’s through their living stories that we understand the challenges they face. It’s not just a matter of ‘I can’t get upstairs’ or ‘I can’t hear someone talk when I’m in a crowd,’ but ‘I’m afraid to tell my classmates that I have diabetes because I don’t want them to look at me differently.’

Stories help us to begin to take the perspective of someone else and to really explore our own way of thinking and living and to reflect on who we are. The other thing with stories is that they often contain surprises. They tell us something we weren’t expecting, or that goes against our assumptions and beliefs. They have the potential of making things strange. You take an assumption and a story may challenge that assumption.

BLOOM: How are you incorporating stories into the medical curriculum at U of T?

Dr. Arno Kumagai: My work in the past at the University of Michigan was with first and second year students. But most of my work here is with post-graduates.

One of the important ways we incorporate stories is by dialogical teaching. We’re very interested in the power of dialogue to open perspectives and new ways of seeing. We train clinicians to use moments of dialogue in the clinical environment to stimulate reflection and storytelling.

We don’t pull people out of the clinical environment and give a lecture, we train faculty to ask questions as part of rounds, or on the fly.

BLOOM: I read a paper where you talked about the importance of creating space for medical students to talk and reflect about both ‘the tragedy and wonder’ of medicine. And that these spaces don’t involve a specific location, but are more like mental pauses that take place in the corner of a ward at any time of the day.

Dr. Arno Kumagai: Yes. As an educator, what is the one question I want to ask a student that will get her to think about the social or humanistic or social justice issues about a patient?

Let’s say an attending physician tells me: ‘I have a 34-year-old woman who’s a single mother of a young child and works downtown at a restaurant. She has type 2 diabetes and is non-compliant with her medicine.’

I would say: ‘What does non-compliant mean to you?’

‘She’s not following what we asked her to do.’

‘Well why?’

‘I don’t know.’

I would encourage the person to think about who this patient is, and what she does. She works in a restaurant and is a single mother. Restaurant workers in the U.S. don’t make enough money to afford insurance, but make too much money to be on public insurance. It’s likely this single mother has no insurance and her medicine costs her upwards of $300 to $400 a month. So it comes down to whether she feeds her kid or takes her medicine.

You want the experiential part of the student seeing the person in front of them tell a story about how they struggle. And for many it will trigger an empathic response of ‘Wait, something is not right about this, and I need to do something.’

BLOOM: You said there’s a distinction between a dialogue and a discussion.

Dr. Arno Kumagai: A discussion is more goal-oriented. It could be about a treatment or discharge plan, and there’s a solution at the end of the discussion.

A dialogue is very different. You bring in your whole self—your background, your values and experiences—and interact with someone in a way that may not result in a single solution. In fact, it may spark more questions or avenues to explore.

For example, if I’m an educator in the ward, I may want to tell a story to residents of an ethical dilemma I’ve run into, but not tell them the ending of the story.

You want to get them to really engage themselves and think deeply about what would they do? Their values, and the way they look at life, may be very individual, so they bring that all in and talk about it. You introduce stories and talk about paradoxes and ask ‘What would you do?’

I don’t want the attending physician to assume ‘I have the right answer.’

BLOOM: It sounds like you’re encouraging them to be able to think more flexibly.

Dr. Arno Kumagai: Health-care providers often assume there is one correct answer and they get it and give it to the patient. Instead of seeing that there are multiple voices constructing the truth through an exchange. That becomes a very different picture that is much more fair and democratic.

When I see a new patient as a diabetes specialist, I’m very cognizant that I need to engage in a dialogue with that person. One of the first questions I ask is ‘What is it that you do really well?’

Some are musicians or runners or video-game players or artists and they’ll start talking about that, and it gives me an idea of who they are and then we’ll talk about diabetes. I want to figure out their strengths, instead of their deficits, and build on them.

It’s an exploration, a partnership, a collaboration. We’re trying to figure out what works for them, with their input.

The answer will be different for different people. That’s why cookbook approaches in many ways don’t work.

That’s very different from thinking I’m the expert, and I have 45 minutes to figure out a solution.

BLOOM: So, in fact, the answer can’t be found by the doctor in isolation.

Dr. Arno Kumagai: No, it can’t. A monological approach is often how we think about medicine: doctors have the answers and patients come for the answers. You can sit in a room by yourself and use analytical skills that are often purely cognitive, and have wonderful thoughts. But that doesn’t involve an exchange with another person who has a background and history, and the doctor actually committing to engage his or her own background and history and perspectives.

I always tell patients that I know a lot about delivering insulin and the complications of diabetes and challenges of treating it. But I know virtually nothing about living with diabetes. And I’m not going to presume I do.

BLOOM: How can we ensure that practising doctors continue to create spaces to reflect on the human and ethical questions of medicine?

Dr. Arno Kumagai: That’s the million dollar question. This is nascent. We’ve been doing this with medical students and graduate students, but what about practising physicians, in terms of continuous professional development?

BLOOM: I was at a meeting here where you spoke about how the best learning is often sparked by the discomfort that a story produces.

Dr. Arno Kumagai: Some of the most effective learning happens when people are forced to question their own assumptions. They’re put into a position of discomfort that disturbs the patterns of assumptions they may hold of themselves and the world. People talk about this ‘stepping out of the comfort zone’ or ‘thinking out of the box.’ Conflicting emotion or experience forces us to think. Not all discomfort is a bad thing.

Dr. Kumagai was recently appointed as the first Dr. F. Marguerite Hill Chair in Humanism Education at Women’s College Hospital.

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Share your mental health story on Bell Let's Talk day

By Louise Kinross

With Bell Let's Talk day coming up Jan. 31, I'm gathering comments from parents that BLOOM can post anonymously on social media that day.

What would you like the world to know about how raising a child with a disability in our culture affects your mental health?

More than a decade of research shows parents of children with a variety of disabilities have higher rates of depression and anxiety than other parents.

What are your mental health needs, struggles, hopes?

I'm looking for short comments that we can post anonymously on BLOOM and its social channels on January 31.

Leave a comment here or e-mail me at lkinross@hollandbloorview.ca. Thanks!

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In dark times, reaching out

Our new A Family Like Mine video features a remarkable mother who wants to break the silence around mental illness.

Leomina Valderrama has two sons: Bryan, 22, and Brendell, 15. Since Brendell was born with cerebral palsy, seizures, and complex medical needs, Leomina has dedicated her life to his care. In recent years, her husband Gilberto struggled with depression. Leomina reached out to social worker Barbara Germon at Holland Bloorview to help her cope. Last April, her husband died of suicide. "My heart wants to reach out to those who are going through what I've been through personally," Leomina says. "There is help available when we don't stigmatize with the silence of mental illness, and raising a child with a disability is a challenge, but there is joy that comes with it." Here she talks about strategies to build her resilience as a single parent and move forward, as well as her fear of who will care for Brendell when she can't. Bryan talks about what he's learned from Brendell.

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