Thursday, December 6, 2018

Music therapist helps create moments of joy

By Louise Kinross

Eunice Kang’s music career began at the age of three. Her mother was a professional pianist, so “there was no choice for me not to go into the music field,” she says, laughing. Eunice has a university degree in violin performance from South Korea, and spent her 20s travelling the world as a professional violinist. Eunice came to Canada to study music therapy at Wilfrid Laurier University and volunteered at Holland Bloorview while she was a student. She later did an internship here and was hired in 2011. Eunice is a registered psychotherapist, neurology music therapy fellow, and accredited music therapist. She brings a unique perspective to the families she works with because her son Nathan developed seizures at age two.

BLOOM: How did you get into the field?

Eunice Kang:
Through my whole life I’ve played the piano and the violin. After performing in numerous concerts during my 20s, I wondered if there was another field I could dedicate myself to, where I would feel more valuable. I love working with children and that’s when I thought about music therapy.

BLOOM: What is a typical day like?

Eunice Kang:
During the week I mostly see inpatients where the goal is to help them regain their abilities, or enhance their existing ability. Music is a safe environment. Most children like music, so it can have a life-changing impact on them. We have many traditional instruments and new music technologies like Soundbeam, which uses sensors to detect movement and translate it into sounds, and the 
virtual music instrument. Through music therapy we help children to improve physical and mental health or to better cope emotionally with their hospitalization and loss of abilities. 

BLOOM: How would you support their emotional wellbeing?

Eunice Kang
: Often it’s by making our own music. We may use technologies like GarageBand and they’ll write their own song, or we may pick famous music and change the words to reflect their emotions and stories.

BLOOM: What about your work with outpatients?

Eunice Kang:
We see a lot of children with autism who are outpatients. They may be working on improving communication or self-regulation skills. They may be learning how to play the piano, violin, guitar, ukulele, drums or shakers with individualized education plans.

BLOOM: Why is music important to children with disabilities?

Eunice Kang:
It offers a safe, rewarding place where children can be themselves. In music therapy, you don’t need any prerequisite skills. As music is non-verbal, we can communicate and express ourselves more easily through it. That motivates our children to enhance their skills.

BLOOM: What are the joys of your job?

Eunice Kang:
I especially love to work with babies and young children. I also love working with teenagers and preteens. But the babies are pure angels. When we’re doing therapy, I don’t feel like I’m doing therapy. I’m enjoying them, moment to moment, and I can feel joy. When clients make progress—it doesn’t matter if it’s slow or fast—it boosts my self-confidence. I remember one family who came and during their child’s assessment, the mother started to cry. I asked her why she was crying, and she said she’d never heard her son say his name. He said it many times in that session. So there are breakthroughs.

BLOOM: What is the greatest challenge?

Eunice Kang:
Sometimes controlling my emotions. My son’s seizures started at age two. Sometimes I see people going through what we went through and hard moments for our parents bring up my own memories and emotions.

BLOOM: Can you tell us a little bit about your son Nathan?

Eunice Kang:
He was hospitalized for three months due to a high fever and then the seizures started. They are intractable. He lost the ability to stand, walk and talk. It’s a disaster to see your own child lose everything. My son is eight now, and I’m better. Time heals me, too.

BLOOM: Was there anything you found helped you cope with your son’s medical condition that might be useful to other parents?

Eunice Kang:
The best thing is direct family support. Emotional support is important, and Andrea Lamont here has done lots of therapy with me. I’d say the reason I survived was because of Andrea’s support. When something like this happens, it’s best to open up to someone you trust and talk about it, rather than hide. Some of the parents here who know my situation have also been very helpful in my life.

When I started, I didn’t think I would have a special-needs child. Now that I do, I have lots of support from my managers and coordinators. Everyone understands my situation, and they make everything easy for me to work. The Canadian health-care system is so much better than in Korea, so I feel really blessed that Nathan was born here.

BLOOM: How has your own experience parenting a child with disabilities influenced your work?

Eunice Kang:
My attitude has changed. When I was a beginning music therapist I didn’t really take work home with me. But now I take things more seriously. Now there’s no boundary between work and home, but more of a continuation. I also find that I think about the child and his or her environment more inclusively. I’m not just thinking about music therapy. I will check to make sure families have all of the available resources in other areas of their life.

BLOOM: What have you learned through patients?

Eunice Kang:
I really admire their courage and how brave they are. I’m often surprised at how families will advocate and protest to protect their child. They’re very involved in their child’s care.

BLOOM: What work here are you most proud of?

Eunice Kang:
The Baby and Me program, because I love helping parents and baby to bond together, and to help with parent’s emotional challenges. I also love Holland Bloorview Rocks. The children attend about 10 or 11 practices and then we put on a concert. I will never forget the joy and excitement on their faces, and their attitudes when they’re on stage. They are pure rock stars. This program also supports our music therapy program, so the children are proud to know that they’re helping other children.

Friday, November 30, 2018

Poetry 'is a type of magic' for me

By Louise Kinross

Nikoletta Erdelyi is a project coordinator at York University who works with academic advisors in all faculties to improve the way they support students. She’s also a writer, actress and artist. One of her art pieces is in an exhibit called 18 | eighteen at Holland Bloorview. It pairs the grey, sterile X-rays of her childhood with a whimsical poem about her vibrant life outside the hospital. Befriending Skeletons is part of an exhibit in which young adults depict moving from pediatric to adult care as a person with a disability. The exhibit was curated at the Koffler Centre of the Arts and will honour the International Day of Persons with Disabilities on Dec. 3. Please visit the hallway on the hospital’s first floor between 3-5 p.m. on Monday.

BLOOM: How did you get the idea to mix X-ray images of you in childhood with a poem about the kind of girl you were?

Nikoletta Erdelyi:
I’ve been writing for as long as I can remember. A big part of my childhood involved medical appointments and surgeries and being in the hospital. When you’re a child, the hospital is an absurd place. The scents, the sounds and the words you don’t understand. It’s a petrifying feeling. The X-ray room is especially daunting because it’s dark, the table you lie on is cold, and there are very scary images of your bones. You know you’re different from the rest of your peers. I wanted to combine that feeling of the absurd with something a bit more fun and whimsical.

BLOOM: It’s very powerful because it contrasts your memories of the ‘smell of the operating room
 and ‘masked strangers who lull you to sleep,’ with a spunky girl who insists her cast be yellow to match her princess dress.

Nikoletta Erdelyi:
That was exactly my intention. Those images of the X-ray and operating rooms are still very vivid to me. I still have dreams about that time in hospital. As a child, you don’t understand what they’re going to do to you. It really is terrifying and a lot of it can feel like a horror film. Even though surgeons are wonderful human beings and accomplish fantastic results that improve people's lives, as a child it's difficult to comprehend that you're viewed through a medical lens.

BLOOM: And the clinical X-rays don’t in any way match your personality as a girl.

Nikoletta Erdelyi:
That’s what I was going for. When you’re a person who strays from most people physically, others have perceptions about you and what your life is like. If an average person were to view those X-rays, they might perceive my life as difficult, dull and even painful. I was hoping to capture with the poetry that I’m someone who is full of life, who has hopes and dreams, and who is a happy person, a full person.

BLOOM: Do you have any advice for how health professionals could make children's hospital experience less frightening?

Nikoletta Erdelyi:
I was born in Hungary, and a lot of my surgeries and hospitalizations took place there. The hospitals were in old buildings and they didn’t have funding for things like child-life specialists or family-centred care. When I moved here and was at Holland Bloorview and SickKids, it was no longer as terrifying. There were bright open spaces and Mickey Mouse on the wall and everything was so personalized. I remember at SickKids they had me choose which flavour I wanted in my anesthetic mask. Little things like that made a big difference.

BLOOM: It seems like most of your medical intervention happened as a child. In your poem, when we reach the end, it is focused on going to university, moving to the city, getting a job and falling in love. We don’t hear about any more surgeries or hospital stays.

Nikoletta Erdelyi:
That’s correct. Most of my surgeries happened as a child. My spine was a big concern, but it stopped shifting when I was a teenager, so I no longer needed to come for these regular appointments. One of my biggest fears was having spine surgery.

BLOOM: What was your move into adulthood like then?

Nikoletta Erdelyi:
Of course I was apprehensive. To leap into adulthood is scary for anyone. But I had so many strong supports behind me I was ready for what was next. I went to university, and within a year I moved out to my own apartment. I dated. I worked.

For me, the transition was pretty smooth because of the support systems I had at Holland Bloorview and with my friends and family. By the time I was 17 I became comfortable with the fact that I was different. I do use a wheelchair, but that’s okay. Ultimately, what matters the most is my resilience and passion. That was me coming to terms with the fact that I didn’t need footsteps because I had something more powerful—my wheelchair is my wings.

BLOOM: Yes, that’s a beautiful image at the end of your poem of you taking off. I know you’ve written a book. Can you tell us about that?

Nikoletta Erdelyi:
It’s called The Electronic Sticky Notes That Saved My Life. It’s a story about my life when I was 19. In a lot of ways it’s about the transition to adulthood, about becoming yourself and accepting and finding yourself. At the time, I’d gone through a very difficult breakup. It’s about how I rebuilt myself and moved on from that and came to terms with my femininity as a woman who uses a wheelchair. I won a grant from the Ontario Arts Council to write it but the most challenging thing is finding an agent. So it’s a work in progress.

BLOOM: I read that you performed in a play called Borne that was directed by Judith Thompson, who also wrote a play called RARE about living with Down syndrome.

Nikoletta Erdelyi:
Yes. Borne was about nine different people who use wheelchairs. That was an exciting time, talking about my experiences growing up differently and how I became the person I am.

I’ve written a one-person play called Ghost Tales that I’ll be performing at Soulpepper next year.

BLOOM: Wow! What is it about?

Nikoletta Erdelyi:
It captures some of my lived experiences in romantic love and other important milestones of my mid-20s. It explores heavy topics, including tokenism, affirmative action, societal concepts of love, and the moral pedestal that people with disabilities are often placed on. I want to capture the idea that we are all capable of good and evil. I'm all about making peace with absurdity, and can't wait to bring this piece to the stage next spring!

BLOOM: What was creating Befriending Skeletons like for you?

Nikoletta Erdelyi:
It was a very cathartic experience for me. It was like taking skeletons out of the closet, literally. I had found those X-ray images in my mom’s closet, and I had no idea they were there. It helped me to put an end to that chapter in my life and realize how far I’ve come.

BLOOM: What do you most love about writing?

Nikoletta Erdelyi:
I think it transcends day-to-day language and the way we speak. Through poetry especially we can capture universal emotions. There’s a type of magic in that for me.

BLOOM: What advice would you give parents and professionals who support youth with disabilities?

Nikoletta Erdelyi:
I would encourage them to promote independence and autonomy, because so often when you have a disability you live with your parents and health professionals want to be there every step of the way to support you. But at the same time, it’s important to find yourself, and figure out what you want outside of those expectations and pressures.

One thing that helped me was I went to all of my medical appointments alone since I was 15. It helped me become a strong advocate and to figure out what I still needed to learn. I would encourage parents and professionals to listen and to encourage clients to speak up for themselves.

Monday, November 26, 2018

Dads find Snoezelen pool a relaxing place to share ideas

Photos and story by Louise Kinross

Lewis Tolensky has been taking his son Seth swimming at Holland Bloorview’s Snoezelen pool since he was one.

When the lights are dimmed, the small, heated therapy pool becomes a soothing environment where large balls bob in the water and change colour, a kaleidoscope of butterflies is projected on the wall, and classical music plays.

Lewis is part of an informal group of dads who bring their kids at the same time.

“They used to come at different times, but then they all ended up booking the same time spot,” says Lifeguard Michaela Jones. “Conversations sparked about sports and what’s happening at home and resources for their kids.”

“It makes you feel like you’re part of a little community,” Lewis says. “We all have different situations, but there’s a lot of shared experience you can learn from. School is always a big topic. But we don’t just talk about disability. We talk about football and the news of the day and politics. It feels very normal and natural and nice to connect with them.”

The dads’ group formed organically as the fathers got to know each other. “We bounce ideas off each other in terms of how we handle certain scenarios,” says Pablo Pommells. He’s been bringing his nine-year-old daughter Ayla, who has autism, since she was two.

“A dad might have a question about sleeping, or about using a certain product,” Pablo says. “It’s nice to know that others can relate.

“A lot of fathers don’t really engage with their children with disabilities—that’s why there’s a high divorce rate. It’s important to put it out there to fathers that it’s okay to have questions and doubts about your child, and you should never deny things. Everybody has something to contribute.”

Holland Bloorview’s Snoezelen pool and room are open to children and adults with any type of disability. You don’t need to be a Holland Bloorview client to access the pool.

A 45-minute session costs $14.37 for parent and child.

Lewis says the accessibility of the pool becomes more important as Seth, who is nine, grows. “It’s a comfortable place where it’s easy to transfer Seth onto the shower chair and into the pool and the warm temperature combines for a great experience for him and for me,” Lewis says. “As Seth gets bigger, going everywhere else gets more complicated, but Bloorview stays the same.”

You can register
online or e-mail Snoezelen Coordinator Lorraine Thomas at Winter registration opens at 9:30 a.m. this Thursday, Nov. 29.

Wednesday, November 21, 2018

A brother's illness inspires teen to 'cherish every moment'

By Louise Kinross

Vanessa Williams, 18, has spent three years on the Children’s Council at the Hospital for Sick Children and last year she chaired the group. SickKids has always been a part of Vanessa’s life, as her older brother Daniel has sickle cell anemia—a condition in which a person’s red blood cells are shaped differently. This makes it easy for the cells to stick together and block off small blood vessels, causing pain and organ damage.

As a teenager, Vanessa became a patient at SickKids, too, after she was diagnosed with post-traumatic stress disorder, anxiety and panic disorder. We spoke about what it was like to grow up as the sibling of a child with a chronic, sometimes life-threatening, condition.

BLOOM: Tell us about how you were first exposed to SickKids?

Vanessa Williams:
When my brother Daniel was six months old he was diagnosed with sickle cell anemia. So when I was born, SickKids was my second home. When Daniel was younger, he was in and out of the hospital once every three months. Initially, I never thought anything of it—it was the only life I knew. I used to look forward to when he had his annual physical, because it meant I got to take the day off school, and could roam around the hospital. It wasn’t till I was 12 or 13 that I started to realize how severe his illness was.

BLOOM: That it was life-threatening.

Vanessa Williams:
Yes, in 2005 he fell ill and was on life support at SickKids. That’s where my anxiety started to stem from. I recognized that the life I was leading wasn’t normal to my peers.

When my brother was on life support, my mom didn’t want me to see him in that state. But when he was on a regular floor, it was a very emotional time for me and my whole family. His flare-ups could happen out of the blue. It forced me to grow up at a very young age.

BLOOM: What was the greatest challenge as a sibling?

Vanessa Williams:
Just talking to peers about it, and feeling like I was alone outside of my house, and even with some extended family members. They didn’t understand it. People on the outside think they understand, but you don’t know how much a chronic illness can impact a person until you’re in that position. The other kids I knew didn’t have a sibling with a chronic illness.

BLOOM: So I guess if you would tell your friends about what was happening, but they probably couldn’t relate in any way?

Vanessa Williams:
For the most part, I usually got a reaction of ‘I feel so bad for you.’ But I didn’t necessarily want a pity party, I just wanted to be supported. No one had that relatability of understanding, without me having to explain every little aspect. There were a few individuals in my elementary school years who were great supports. Most of my teachers were very understanding. But for the most part, no one understood what I was going through.

BLOOM: We have sibling programs at Holland Bloorview and there is a group called Young Carers that runs programs for children who support any family member with an illness or disability. Have you ever participated in those?

Vanessa Williams:
No, I haven’t. I feel that’s something that would be a huge success at SickKids. I remember at one of our council meetings a sibling stressed that she wanted support at a time of crisis when her sister was in the hospital. They don’t receive it outside of their inner circle.

My mom always used to say that when my brother was in hospital she tried to split time between him and me so that I didn’t feel like I’m left out or not loved. But when I was younger it bothered me. I thought everyone cared for him more than me.

BLOOM: That’s a natural feeling. In studies of siblings, a common emotion is resentment, because it seems like the sun revolves around the ill child. And even though the sibling knows her brother or sister has extra needs, you still feel left out.

Vanessa Williams:
I’d like to see more support groups for people who are facing the same illness, whether it’s the kid with the chronic illness or the sibling or the parents.

BLOOM: How did you become a patient at SickKids?

Vanessa Williams:
When I was 13 I was seen at Centenary Hospital for my anxiety. It started in Grade 7 when I was feeling nauseous all the time. I’d feel scared to go to school, and I had a horrific panic attack at school. I also had dizziness and was feeling overall anxious. When I was 16 I became an outpatient at the teen clinic at SickKids.

BLOOM: What treatments did you find most helpful?

Vanessa Williams:
I learned techniques in cognitive behaviour therapy, as well as talking it out. I’d use grounding techniques to reassure myself that my symptoms were just the anxiety, and it would pass after a certain period of time. Another method was being able to distract myself from how I’m feeling. For example, when I was experiencing an anxiety attack my brother would start talking about something aside from that, and that would help. I also had a grounding rock I used to use.

Other stuff that helped was doing extra-curricular activities. In an odd way, doing things that initially provoked my anxiety, like being a part of the Children’s Council.

At the Children’s Council I was surrounded by other individuals who understood my experience. During meetings someone would say something and I’d say ‘Oh gosh, I’ve felt that all the time, but I thought I was the only one who felt that way.’

Last year I got involved in a community youth council. I’m interested in politics, and we got to come up with ideas for initiatives in our community. The doctor I was seeing at the time said I had to do stuff that I enjoyed.

BLOOM: What advice would you give to another sibling of a child with a chronic illness?

Vanessa Williams:
Make sure that you have some sort of concrete support outside of your family and friends: a therapist or a community leader who can give you concrete advice. It needs to be someone who understands your experience and is older than you.

BLOOM: It sounds like you’re saying you need specialized support?

Vanessa Williams:
Yes. Every sibling of a patient who has a chronic illness needs it. And we also need more supports for the person who has the chronic illness. Having someone who is older, who has the same illness, and can talk the younger person through it and be a mentor.

BLOOM: Is there a project you were involved with on the Children’s Council that you’re most proud of?

Vanessa Williams:
During RBC's Make 150 Count campaign they reached out to our council and gave us some boxes with $150 in them. We broke into groups and came up with how we wanted to Make 150 Count through the hospital. My group gave out Timbits on the floors to the nurses. Another group gave out pillows and blankets to people in the emergency room. We were also part of a video to create a Canadian Children’s Charter. This year, I was able to facilitate a group for the SickKids’ GetLoud walk and we raised $1,500 in a short period of time.

BLOOM: That’s great. What do you hope to do after high school?

Vanessa Williams:
I want to go to university. I’m leaning towards University of Toronto's VIC ONE program. It focuses on eight different majors and has small class sizes, which I need. It reminds me of the alternative school I go to now.

BLOOM: What would you like to do eventually?

Vanessa Williams:
I know whatever I do will be along the lines of what I’m doing now—helping others. It may be within pediatric care. I’m very passionate about that. I’m also really interested in public policy. A goal of mine is to be part of municipal politics. I love Toronto. As a municipal leader I want to be able to help those within the city.

BLOOM: A number of studies have shown racial inequities in the way people receive health care. Has race ever been an issue for you in the care you or your brother received?

Vanessa Williams:
No. I know a lot of people complain about reaching roadblocks as a result of their sexuality or race.

BLOOM: Or disability.

Vanessa Williams:
Sickle cell anemia only impacts black people and other visible minorities and it was never an issue for us. My mother was a personal support worker in palliative care, and she was always very hands on with my brother’s care. She made sure he received the best care.

In my case when I was suffering from mental illness, I never felt like I was getting less care than others. SickKids has always been a safe place for me. I knew that no matter what was happening with my brother, or myself, we were receiving the best care possible.

BLOOM: How are you a different person because of your experiences with Daniel?

Vanessa Williams:
First and foremost, I feel like I’m more mature than a lot of kids my age. And I have a very different perspective on life, because my brother has faced life-and-death situations. I cherish every moment.

BLOOM: How is your brother doing now?

Vanessa Williams:
He’s doing well. Since he’s gotten older his condition hasn’t been as severe as it was when he was younger. He’s currently at Centennial College and he’s going to go to Ryerson for social work. He always said he wanted to do political science at U of T and then days before the applications were due he changed his mind. ‘You know what?’ he said, ‘I want to help other kids who have faced what I’ve faced.’

Friday, November 16, 2018

A child's unhappiness, not diagnosis, most strains families

By Louise Kinross

Unhappiness and worry in children with disabilities is the most significant predictor of negative impact on family wellbeing—regardless of diagnosis—according to a study published last month in the Journal of Intellectual Disability Research.

Over 200 Canadian parents of children with disabilities like autism, cerebral palsy and intellectual disability filled out surveys about their child’s function, behaviour and emotions, and how it influenced the family. The children, in Alberta, Ontario and Quebec, were aged four to 13. 

Despite parent perceptions that their children had more serious problems in areas like peer relationships or inattention, “it is children’s worries, fearfulness and general unhappiness that is most impactful on the family’s ability to maintain their social, financial and personal well-being,” the authors write.

Parents assessed negative impacts of the disability on the family related to “increased time and financial demands” and “disruptions in family routines, social isolation and decreased emotional well-being.”

BLOOM interviewed Lucy Lach, an associate professor in the School of Social Work at McGill University, who co-authored the study with Dr. Emily Gardiner at the University of British Columbia. Kids Brain Health Network funded Emily's postdoctoral research. Emily used a data set developed by Parenting Matters, a team studying what it means to parent kids with disabilities. Parenting Matters was funded by the Canadian Institutes of Health Research and Holland Bloorview Kids Rehabilitation Hospital Foundation.

BLOOM: Why was there a need for this study?

Lucy Lach:
Emily, who is the lead investigator, is interested in tackling this issue of the value of categorical vs. non-categorical research. Categorical research is diagnosis-specific, and non-categorical research cuts across diagnoses. From a research perspective, there’s an ethical dilemma about funding being allocated only to specific disorders.

There’s a whole industry of conferences and journals dedicated to autism and cerebral palsy and epilepsy. But other disorders—particularly as we get more fine-tuned in locating genetic disorders—are so tiny, that their voices get excluded.

Non-categorical research allows parents to find shared experiences—not because of their child’s diagnosis—but because of similar functional impairments. This is research that can benefit all families.

BLOOM: What were the key results?

Lucy Lach:
There were three key variables that came out as significant predictors of how negatively parents appraise the impact of a child’s disability on the family. The most significant was higher emotional symptoms. These refer to fearfulness, worry, sadness and withdrawal. The other two predictors were lower social skills and lower practical, daily-living skills.

BLOOM: What kind of emotional problems were you looking at?

Lucy Lach:
These are internalizing behaviours like fearfulness, sadness and being downhearted. They’re often invisible. With externalizing behaviours like aggression, conduct problems and combativeness, it’s something very physical, and you know it when you see it.

A child who is more withdrawn, or fearful or sad, may be interpreted as a child with a quiet nature, or a child with a lack of motivation. They’re not disruptive, and they’re less likely to come to the attention of teachers. Unless a parent is worried about their child’s emotional state, it’s not likely that clinicians will pick up on it.

The results are far-reaching because they suggest that when a child is unhappy, not only is it the worst feeling for the parent, but it has a negative impact on the entire family.

BLOOM: Was that a surprise?

Lucy Lach:
I would not have predicted this result. I would have thought that a child’s aggressive behaviour, rather than emotional problems, would have the highest degree of negative impact. People don’t realize how important a child’s emotional life is.

I remember when I was doing my work with children with epilepsy, we were paying attention to aggression, because it’s so disruptive in the classroom and with peers and family. But we weren’t at all paying attention to fearfulness and sadness.

BLOOM: What can clinicians take from this?

Lucy Lach:
I think the assessment of fearfulness and sadness and worry is really important in clinical practice. We know from the literature that parents are much better judges of their child’s externalizing behaviour.

Kids themselves are a better judge of their internal state because they’re more tuned into it. So clinicians need to use measures that include emotional symptoms and—to the extent possible—have the child complete them.

BLOOM: So it would be important for children who are non-verbal to have another way to identify their feelings?

Lucy Lach:
I used to use cards with faces on them, and ask kids to point to the one that shows how you feel inside, how you feel in your heart.

Clinicians need to assess, assess, assess, and develop programs that address emotional symptoms in kids.

If you want to help families be less negative in their appraisal of the impact of their child’s disability, develop programs that target a child’s emotional well-being and social skills.

BLOOM: We know that parents of children with disabilities have higher rates of depression and anxiety. Does the study in any way tie a child’s emotional problems to a parent’s emotional state?

Lucy Lach:
No, we can’t extrapolate that. We could do a separate study with the same data to look at whether a child’s emotional problems are predictive of parent depression and anxiety.

BLOOM: The study notes that children’s functioning within a diagnosis often varies greatly. And that it’s better to target interventions to similar functional problems across diagnoses. This fits with a move here at Holland Bloorview to ‘personalize pathways,’ so that a child receives services to meet their needs vs. their diagnosis. But that’s not the way children’s rehab has traditionally been set up, is it?

Lucy Lach:
Absolutely not. That will be hard. We have clinics that are specific to diagnoses, journals specific to diagnoses and conferences specific to diagnoses. The world is structured by diagnosis.

BLOOM: In the section on limitations of your study, it says that the Family Impact of Childhood Disability Scale you used has positive and negative subscales, but this study focused on negative experiences. So, in addition to the negative impact of a disability on a family, there are also items looking at positive impact. Is there anything positive parents can take from the study?

Lucy Lach:
Yes. The idea that parents simultaneously hang on to positive and negative aspects of the impact. We need to inquire, and help families build, their narrative around how having a child with a disability has had a positive impact on their family. It’s not a narrative that they’re invited in to frequently. We should be asking the question: ‘Tell me about how your child’s disability has had a positive impact on the family.’

Tuesday, November 13, 2018

'Endangered Syndrome' ad sparks controversy

By Louise Kinross

Have you seen the new ad by the Canadian Down Syndrome Society? Young adults with Down syndrome dress up as pandas, polar bears and lions to suggest that, like these endangered species, their well-being too is threatened.

At, the group shares why their existence is precarious: births are falling, 65 per cent are unemployed, and one in four live in poverty. They note that animal welfare organizations have 90 per cent more funding than Down syndrome organizations in North America.

You can read the group's letter to the IUCN Global Species Programme Red List Unit. 

Currently, there are almost twice as many hands-downs vs. hands-ups on the ad at YouTube, and one Toronto woman with Down syndrome criticized the ad for comparing people to animals.

I personally like the ad. I think it makes a powerful statement by reminding us that we're willing to devote more resources to endangered animals than to human beings.

I also think that the ad plays, in a clever way, on the stigma that people with disabilities are less than human. Many viewers will not want to be reminded that, according to research, we carry this kind of implicit bias at a subconscious level. Perhaps that is where much of the discomfort with the ad stems.

I recognize at least two of the actors from the play RARE, which was part of the Toronto Fringe Festival in 2012, and starred nine actors with Down syndrome telling their stories. One is Krystal Nausbaum (photo above), a former BLOOM role model.

Krystal and a number of the RARE actors came to Holland Bloorview for a BLOOM speaker night about the play and, during the discussion, spoke about their concerns with prenatal testing. These are people who speak their mind on a number of issues. They are not simply mouthpieces for the Canadian Down Syndrome Society. 

I find the ad's costumes beautiful and unique. They make me think of the beauty and value of diversity.

The ad directs people to the website to sign a petition. I was disappointed when I got there that there was, in fact, no petition. 

What did you think of the ad? Post a comment below!

Thursday, November 8, 2018

'Cancer throws you in the deep end'

By Louise Kinross

The other day I saw the image above on social media and clicked on I draw childhood cancer, a Facebook page run by Angus Olsen. Angus, who lives in Australia, is trained in animation and began drawing his experiences when his daughter Jane was diagnosed with an aggressive cancer in 2016 at age 2. “It was a way to visualize the unspeakable,” he says. Since then, parents of children with cancer worldwide have written to say his illustrations make them feel less alone. He’s now making comics to help explain procedures, like inserting a nasogastric (NG) tube, to preschoolers. These will help parents, child-life specialists and other professionals reduce anxiety in hospitalized children. We spoke about the role of drawing at his daughter's bedside, where he lived for months.

BLOOM: When did you first start drawing about Jane’s experience as a cancer patient?

Angus Olsen:
I was living with her in hospital in 2016 when she was doing some heavy chemotherapy, and her tumour grew rapidly—it did the opposite to what you expect them to do. It became quite serious. I was extremely lonely, and people kept asking me questions I didn’t know how to answer. So I started to draw a comic called Jane to explain how lonely it was, and to explain situations that you can’t quite explain in words. My wife had been living with Jane until she came down with flu, and then we swapped.

BLOOM: Did you draw on a daily basis?

Angus Olsen:
I kind of drew when I felt like it. I did a lot of sitting, staring at Jane’s numbers, and hoping they’d go up. It wasn’t just in her hospital room, but in the oncology clinic where she received chemo. One day, for some reason, she wanted to fly, so I drew her as a pilot flying a plane (see below).

Originally I was drawing for myself, but then I put them on Facebook. It was to try to explain to people ‘This is what it’s like.’ Then I joined a couple of pages dedicated to dads of children with cancer and started to make friends. Some of the dads had daughters who were at the same stage of treatment. Even though cancer is very individual, and everyone is different, they were very helpful because I could ask ‘Is this normal?’ Cancer throws you in the deep end.

While your child is doing treatment you feel like you’re abusing your child. You know it’s for their sake, and you just hope on the other side that they come out close to normal.

As I became friends with other cancer dads, there were little things that impressed me about their kids. The first child I drew like a warrior on a horse, because she was remarkable in how she continued to have a life despite what was going on. It started off with me asking these dads if they’d like me to have a crack at drawing their child. Rather than send me photos, they would have me go through their Facebook page so that I could see what the child looked like disease-free. Especially for some of the children who had passed away, I wanted to show what the child looks like free of cancer. Because in reality, the children who die are finally free of it.

BLOOM: Parents often feel helpless in hospital when their kids are going through these treatments. Did drawing provide a useful distraction or a way of thinking differently about what was happening?

Angus Olsen:
It was a way to visualize the unspeakable. It helped me, but I guess I don’t know how to explain it. I know now that I wouldn’t remember anything that happened after the trauma if I hadn’t drawn it. It felt like it needed to be done—to explain the unspeakable to people and myself.

My most recent art is about placing an NG tube. For a long time when I was in hospital, there was nothing about NG tubes. I didn’t know why I was ramming this tube down my child. I thought maybe there were ways I could be practically helpful to other dads of kids with cancer, by giving them something visual that explains why something like an NG tube is important. I only posted that the other day, and the reaction to it is shocking to me. It’s had more than 70,000 views.

BLOOM: Parents are often asked to hold their kids down for these procedures, and it’s incredibly traumatizing.

Angus Olsen
: It feels abusive. You feel like you’re abusing your child. Yet you know it has to be you, it can’t be a stranger doing it. At least that’s how I felt. That was really rough on me.

There were lots of other things, too. Like the bandage on the dressing on the child’s NG tube can tear their cheeks off. The actual insertion is quite quick, but the dressing change can take a long time and cause a lot of pain. When Jane’s was finally taken it out, she’d had it for more than a year. Some children vomit them up, and are irritated by it the entire time.

BLOOM: When you talk about the child’s cheek getting ripped—wouldn’t they have come up with some kind of adhesive to prevent that by now?

Angus Olsen:
There’s a lot of technique involved, but sooner or later, the child’s cheek gets worn down, and they run out of skin. And because children are children, and play, sometimes they bump or rub into something, and it tears off. The nurse doing it is very nervous, too. It’s very traumatic on nurses.

BLOOM: That’s what we found in our narrative group for inpatient nurses—that clinicians can have feelings of helplessness and grief when they aren't able to prevent suffering, in the same way that parents do.

Angus Olsen:
If the nurse is a new nurse, if they’re fresh at this, you’re a parent comforting a nurse. It’s an intensely personal relationship. Even though it’s the nurse’s job, it’s incredibly traumatic on them.

I had one male nurse at the local hospital say that Jane’s case was the most traumatic thing he’d seen in his life, and it was the only time he’d ever cried in clinic. They’re all clearly impacted by what they do, but they keep going. I have nothing but praise for nurses.

BLOOM: Did you ever make mental notes of interactions with staff you found extremely helpful, or not helpful, in order to later illustrate them?

Angus Olsen:
I’m pretty forgiving when it comes to the clinicians. I know they’re human. It’s really a struggle for me to watch a new nurse trying to grapple with what they’ve got to do. You don’t want your child to be the experiment to learn what they’re doing, but you know they’re going to help thousands of children. I’ve never come across a bad interaction with a clinician.

BLOOM: Have you thought of doing a graphic novel?

Angus Olsen:
I’ve done graphic novels in the past. Facebook is kind of like a sound bite. People can see an image, interact with it and move on. You can pack a lot into an image, and have it received by many people. The distribution of a graphic novel I don’t think is as wide.

For example, the comic about the NG tube is only eight frames, so you can swipe through it with your child sitting on the bed. I’m looking for a short impression, something that hits someone in the heart and they say ‘Yes, yes, this is me.’

In the future I’d like to draw all of the different childhood cancers.

BLOOM: Did your images have an impact on Jane, or was she too young at the time? Your series about the NG tube could be used by child life specialists to prepare kids.

Angus Olsen:
Jane was too young. She was just excited: ‘Oh, that’s me. Daddy drew me doing this.’

BLOOM: Were there any downsides to your drawing? I’m thinking of an interview I did with a dad of a toddler with type 1 diabetes. He was a filmmaker, and when his daughter was diagnosed, he began filming. But at a certain point, he realized he was hiding behind the camera, because he was so afraid of making a mistake with his daughter’s treatment.

Angus Olsen: For me, the downside of this drawing is that these children do die. It’s actually quite a lot of emotion. I’ve had to wipe tears off my iPad at times. It impacts me in ways I didn’t realize it would. Parents of deceased children from all over the world message me to see if I’ll do their child’s portrait. I’ve had to stop doing that, and focus on the work with a broader impact on cancer, so it’s useful to thousands of people. It’s all about using your gifts in the most useful way.

BLOOM: How is Jane?

Angus Olsen:
She’s been in remission since 2017. She’s five, and starting school. She’s doing very well, but she’s still having a lot of physio because her cancer made a mess of her legs. So she’s learning how to walk properly and we’re training her to develop her legs. The scenario they gave us was that she’d either pass away, or be on a bag for the rest of her life. The fact that we came out with a relatively healthy child when we were dealing with the reality, in hospital, that she could die, was very, very fortunate.

BLOOM: It must be surreal to have had such an extreme experience.

Angus Olsen:
It is. You know that comic of me sitting staring at a blank wall? Cancer parents understand that image. Very recently, Michael BublĂ©’s been talking about his struggle with what’s been happening to his son. And he says things like ‘I can’t talk about it. I can’t explain it. I don’t have words for it.’ I understand that. We cancer dads understand this poor guy is riding our world. Even though his child is in remission, you don’t go back.

BLOOM: You mentioned that the other parents living in hospital were primarily moms. Was that isolating?

Angus Olsen:
My wife made a lot of friends because it’s usually mothers living there. Yes, I’m a very private person, and I don’t do well with counselling and things like that. I found the Facebook groups for dads far more helpful than talking to a parent in person. 

Our daughter’s social worker was invaluable to me, and certain nurses were very comforting. Her surgeon was very good to me as well. So I did have people. But with the urgency of what was happening, and the reality that she could die today, it was too much. I couldn’t leave her bedside to sit down with another parent.