Wednesday, January 16, 2019

With Aicam on the case, hospitalized kids have fun

By Louise Kinross

Aicam Chuong has been a nurse at Holland Bloorview for over 30 years—first as a student, then working with children hospitalized here 
with complex medical conditions and acquired brain injury related to trauma or illness. She’s seen the hospital through four name changes and two sites. A patient recently dubbed her a vampire for the precision with which she always draws blood on the first poke.

BLOOM: How did you get into the field?

Aicam Chuong:
When I was in high school I volunteered in a nursing home feeding the old folks. One day I was there when a code blue was called on the unit, and I saw doctors and nurses come, and each played a different role. One was starting the IV, one was documenting what was going on, one was giving medication orders. I thought ‘Wow, this is really interesting. I saw the dedication, and I thought maybe I want to do that. I went through a four-year nursing program in Nova Scotia and then moved to Toronto with my family.

BLOOM: Why were you interested in children and rehab?

Aicam Chuong:
Children are fun. They recover more quickly than adults and they also open up and tell you what’s going on. A child may draw a picture about being sick and write ‘I want my mommy or daddy here,’ and sometimes parents have to work. I remember calling one mother and telling her: ‘I’ve told your son that you’re coming back after lunch, so you better come back, because I have to tell him the truth.’ I love working with kids. You can console them, you can give them a hug, you can carry them around. You can play games with them to make them happy.

BLOOM: What is a typical day like on the brain injury unit?

Aicam Chuong:
I get my assignment of two to four patients and check in to read the report on how their night went. Then I go into Meditech and look at the care plan so I know how to provide care and get the medications. Some of the patients need extra tests or blood work. The kids are here for therapy, so it’s very important that they have breakfast and be ready for therapy on time. Time management is very important, and I want to make sure all of my patients get my attention.

One of the patients said she was going to give me a name, and the name was vampire, because while some nurses didn’t get her blood with many pokes, I always got it with the first poke. We have to have fun sometimes with what we do!

BLOOM: I think vampire is a great name to recognize your expertise with blood draws.

Aicam Chuong:
Something that helps us when we have to do invasive procedures is to work with our therapeutic clowns. They can come and distract the patient by doing something funny or singing a song. Our child-life specialists also help prepare our patients through play. That’s how our team works.

BLOOM: What is the greatest joy of your work?

Aicam Chuong:
I’m happy to be here and I’m happy I can help the patient and the family. There’s one joyous thing in particular I remember. One of the patients had a head injury and was staying with us from up north. One day he came back from an appointment at SickKids and he and his mother were very upset and emotional. They had been told he probably wouldn’t regain his speech.

But guess what? This patient comes to me one day and says ‘I want to learn Chinese and I want to learn Cantonese.’ I said ‘Okay, let’s start today, right now. I will take my break time—an hour a day—and I’m going to do this for you.’ We started with simple vocabulary and he learned one sentence each day. By the time he left, he could have a full conversation in Cantonese.

One day in the parking lot a Chinese couple was having trouble with paying at the gate and he started talking Chinese with them and they said ‘You speak Chinese, but you’re Caucasian?’ He came back and told me ‘Guess what I just did?’ I said ‘I hope something good.’ He e told me about helping the couple outside and it was amazing. His speaking tone was so accurate. His family was so appreciative and always come back to see us when they’re here for appointments.

BLOOM: Was the patient able to speak again in English?

Aicam Chuong:
Yes. That was a very joyous story. He gained back his language and he also learned Cantonese.

BLOOM: What is the greatest challenge?

Aicam Chuong:
When families come in after their child has had a sudden trauma—like a car accident—or a tumour has been diagnosed. They don’t know what’s going on, or what will happen. The challenge as a nurse is to be present for them, to do active listening and to figure out what they most need help with right now.

BLOOM: I assume some families are very distraught and it must be hard to be on the receiving end of that pain.

Aicam Chuong:
We are here for the family. When I’m here, it’s not just my body, but my mind and my heart. The heart is very important.

BLOOM: What about when you’re incredibly busy?

Aicam Chuong:
We make time. I would rather have a 10-minute break than an hour if that can help the family. We tell them it’s a partnership. I may suggest spending an hour or two with their son or daughter so they can go have a shower or go down to Tim Horton’s for a coffee.

BLOOM: What emotions come with the job?

Aicam Chuong:
Joy, caring, understanding. Sometimes I feel helpless if there’s something we can't do and we have to transfer the patient back to SickKids or another hospital. But when I don’t have the solution to something, I go to my manager and my colleagues for help. We are a team and we stick together.

BLOOM: Do you do anything to manage stress?

Aicam Chuong:
I exercise. I go swimming five to six days a week in the community. I do Aquafit and then I go sit in the sauna and get all of the sweat out. If I work a day shift, I swim in the evening. If I work an evening shift I swim in the day. It makes a big difference. I also listen to classical Chinese music. It relaxes my mind.

BLOOM: You’ve had such a long career here. What keeps you coming back?

Aicam Chuong:
We can make a big difference in the kids’ lives and that’s what makes me stay. It’s very rewarding.

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

Aicam Chuong:
We see so many kids who come to us after trauma. I think we need better psychological support on the unit for patients and their families. Children and parents need someone to spend more time talking with them. If a parent comes out of a meeting where the news was not good, they cry, and they need to talk about it. It’s hard to do that and devote equal time to all of your patients.

Tuesday, January 15, 2019

Retarded, imbecile, morons. Why does The New York Times still use these words?

By Louise Kinross

I could hardly believe my eyes when this New York Times piece popped into my feed yesterday: Donald Trump and his Team of Morons.

Way back in 2012 I wrote to Philip Corbett, the Times' then associate managing editor of Standards,  to criticize the paper's use of the words "retarded" and "imbecile" in headlines. 

On Oct. 26 of that year, Corbett wrote to say "our health editor and our mental-health reporter both agree that we should give stronger guidance to the newsroom about the use of 'retarded.' I will be working with them to draft a new style note."

Retarded. Imbecile. Morons. They're interchangeable, and they all originate from medical words used to describe people with intellectual disability. 

Seven long years ago, the American Psychiatric Association stated that "Mental retardation is no longer used internationally [as a medical term] or in U.S. federal legislation." 

The words retarded, imbecile and moron are not neutral words. They are slurs used to demean a marginalized population. Odd that the Times would continue to use them, when its own style guide counsels neutral language and respect for "preferred group descriptors."

People with intellectual disabilities have spoken. Everyone is familiar with the 'R-word: Spread the word to end the word' campaign. Almost a million people signed a pledge at the website in support of ditching the use of the word retard for a simple reason: It hurts people.

Imagine if the Times, instead of using the word 'morons,' had selected a word that stigmatizes a different group. What if they had written "Donald Trump and his Team of Psychos." Would anyone on the news desk have raised a red flag? Probably, because people with mental illness are a more powerful group than those with intellectual disabilities. 

Why, at arguably the world's best news organization, are editors incapable of coming up with something more imaginative and neutral than a slur for a headline? Why didn't they try: "Donald Trump and his Team of Twits." Anyone can be a twit. A twit is not associated with any devalued group. A twit, as described in the dictionary, is neutral: "an insignificant, silly or bothersome person." 

In a back and forth correspondence with me in 2013, Corbett wrote: "While imbecile,' 'moron' and 'idiot' were all used in the past to refer to people with intellectual disabilities, I don't think most modern readers or speakers of English make any such connection today."

It doesn't matter what individual staff at The New York Times "think." It matters that the paper follows its style guide and shows respect for marginalized groups. A memo to staff on ableism is in order. 

Thursday, January 10, 2019

Adults with cerebral palsy at higher risk for depression, anxiety

Mathias Castaldo is a member of Holland Bloorview's youth advisory and participated in our Dear Everybody campaign to end disability stigma. “The minute we tell someone they cannot do something because they are disabled, we disempower them. We take away their desire to have dreams and to achieve those dreams, and we ultimately take away that person’s spirit.”

By Louise Kinross

Adults with cerebral palsy (CP) have higher rates of depression and anxiety compared to the general population, according to a British population-based study in a primary-care setting.

The study, published in JAMA Neurology on Dec. 28, compared diagnoses of depression and anxiety in 1,705 adults with CP with 5,115 adults without CP who were of the same age and sex and from the same primary-care practice. Adults with CP had a 28 per cent increased risk of being diagnosed with depression and a 40 per cent greater risk of being diagnosed with anxiety. Participants were aged 18 to 89 and received a diagnosis between 1987 and 2015.

BLOOM interviewed two of the authors by e-mail: Kimberley Smith, a lecturer in health psychology at the University of Surrey and Jennifer Ryan, a research lecturer at the Royal College of Surgeons in Ireland.

BLOOM: Why was there a need for this study?

Kimberley Smith: There isn't much research that's been done looking at mental health in adults with CP. Most of the research is in children. Being an adult with CP is different than being a child with cerebral palsy, so we can't apply results from children to adults.

Jennifer Ryan: Our anecdotal experience suggested mental health conditions are prevalent among adolescents and adults with CP. From speaking with young people and adults, we were also aware that often mental health problems are more challenging and have a greater impact on their wellbeing than their physical impairment.

BLOOM: Were you surprised by the findings?

Kimberley Smith: Not really, to be honest. People who live with any long-term conditions have around double the risk of depression and anxiety than people who don't have a long-term condition.

Jennifer Ryan: We also suspected this was the case from speaking to people with CP and the health professionals who work with them.

BLOOM: In a piece Kimberley wrote for The Conversation online, you discuss some of the reasons adults with cerebral palsy may be at higher risk. These include physical causes, such as pain and fatigue, as well as social isolation, stigma, unemployment and lack of accessibility. Why is there so little research on mental health in this population?

Kimberley Smith: Research into aging with CP is still developing, and we've lacked research on the development of both mental and physical illness. We think it's because historically CP was considered a childhood condition, and people didn't really consider that most people with CP have normal life expectancy. Due to this, researchers tended to focus on childhood only. The problem with this is that we lack the evidence required to support the need for specialized care for adults with CP.

Jennifer Ryan: Perhaps the reason there's a lack of research on adults is because services for people with CP are typically organized on a pediatric model. We've found that it's very difficult to conduct research involving adults with CP because there's rarely one service where we can access them.

BLOOM: Research here at Holland Bloorview almost 20 years ago showed the increased risk of secondary conditions that result from poor care when youth transition to the adult health system. It's referred to by families as 'falling off the cliff.' We're very aware, for example, of adults with CP who desperately need physiotherapy, but are unable to get funded therapy, so go without. And adults who are unable to find specialists who understand their condition. I'm assuming the situation is similar in the U.K.?

Kimberley Smith: It's a bit different as we have funded healthcare through the NHS, but we also have the same issues around transitions from youth to adult-care services. A researcher called Professor Allan Colver in the U.K. has done research into how we could improve this. However, we're still a long way from having specialized adult CP services.

In order to advocate for this, two women set up a charity called the Adult CP Hub in the U.K. We as a research team are also in the process of publishing a series of papers on the risk of different illnesses in adults with CP, which we hope will create some of the evidence required to support the need for these services.

Jennifer Ryan: We've also heard families in the U.K. and Ireland use the term 'falling off the cliff.' Even when pediatric services try to prepare them for the transfer to adult services, people are usually still shocked when they realize how few services there are and how difficult they are to access. In particular, it's difficult to access professionals working in adult services who have knowledge of CP.

In the U.K. and Ireland, the difference in pediatric and adult clinician roles is a real challenge for people with CP. While pediatricians typically coordinate the care of young people with CP, there's a severe lack of adult rehabilitation physicians. There are also differences in the eligibility criteria for children's and adult services, which results in adults often not being eligible for services they received in childhood.

BLOOM: Is anyone studying what interventions for depression and anxiety are most effective for adults with CP? When I posted a link to your article on our Facebook page, one reader said that antidepressants increased her spasticity. So I wondered if there were studies examining what treatments work best?

Kimberley Smith: The only researcher I'm aware of who might be looking into this is Dr. Daniel Linhares, based at Columbia University in New York. This is a link where he talks about the use of antidepressants in adults with CP.

BLOOM: I just found this story about a new centre for adults with CP at Columbia!

Your study found an increased risk in depression and anxiety for adults with CP and no intellectual disability. It didn't find the same increase in adults with intellectual disability. This seems odd, in that adults with intellectual disability would have the same physical problems, such as pain and fatigue, and face the same stigma. Is it possible that depression and anxiety in adults with CP and intellectual disability is missed by clinicians?

Kimberley Smith: Based on our work, we can't say for sure. One reason could be due to 'diagnostic overshadowing:' this is a term used to describe when distress presents as challenging behaviours, rather than as the symptoms we have been taught to link with depression and anxiety. This could mean that depression and anxiety are missed.

However, there is also work that's been conducted in populations of people with intellectual disability that indicates that the prevalence of anxiety and depression in these individuals is no different from the general population. In short, we don't really know, but it's really important that as researchers we try and find out.

BLOOM: You mentioned this study is part of a series on aging in CP. 

Kimberley Smith: We have one study written by Jennifer on the increased risk of death from non-communicable diseases in adults with CP. It was recently accepted for publication in Developmental Medicine and Child Neurology. There are also two other papers looking at the risk of developing non-communicable diseases and arthropathies in adults with cerebral palsy. Both have been submitted for publication and we're keeping our fingers crossed!

Tuesday, January 8, 2019

Why a new face-scanning genetics app worries me

Photo in Nature, by Michael Ares/The Palm Beach Post via ZUMA. This girl has Cornelia de Lange syndrome, a condition with distinct facial features that an app called Face2Gene was taught to identify and distinguish from other rare disorders.

By Louise Kinross

Yesterday, Nature reported on a paper in Nature Medicine about a smartphone app called Face2Gene that helps clinicians diagnose rare genetic conditions by analyzing photos of faces.

According to Nature, "it relies on machine-learning algorithms and brain-like neural networks to classify distinctive facial features in photos of people with congenital and neurodevelopmental disorders." 

Not surprisingly, it's better at matching a face to a syndrome than clinical geneticists are.

"We failed miserably, and Face2Gene killed it," a geneticist is quoted saying. In fact, Nature used the header 'Killing it' above that section.

"Killing it" isn't quite the way to describe how it feels to be given a diagnosis of a rare genetic disorder in your newborn. For parents, it's not a game, or a sport, that you win.

If Face2Gene means families of children with the same rare syndrome will be better connected to share information and support, that would be invaluable. But I don't imagine the database serves that function.

I don't believe Face2Gene will necessarily lead to better treatments or therapies for rare disorders, and I wonder whether it will further stigmatize people with unusual faces.

To parents, there is something precious and sacred about a newborn's face. Gazing into our child's eyes is the first way parents connect with that new life.

When your child has unusual features, suddenly the face, instead of being a conduit to loving our child, becomes the focus of a great deal of negative attention from clinicians. All types of measurements of our baby's face and head may be taken and recorded, and we may be given a list of things that are "wrong."  

When my son was four days old, a geneticist asked us to have the hospital photographer take photos of his face and profile, as well as his feet, which apparently were extra wrinkly. She said it would be useful to have photos on file to help doctors identify other kids like my son. As a new parent, it felt intrusive and stigmatizing.

Face2Gene has about 150,000 images in its database. Nature noted that these are mostly white faces, and the app only recognized Down syndrome in 37 per cent of black Congolese children. They plan to address this ethnic bias by appealing to doctors for photos of more diverse children and adults. As more photos are fed into the system, it will become more accurate. It sounds benign, but are there any negative implications?

In 2012 we reported on a French study in PLoS One that found photos of children with Down syndrome elicit less positive attitudes than photos of non-disabled children, particularly if the facial features are "strongly typical" of Down syndrome. Photos of children with Down syndrome were automatically associated with a negative trait, in implicit association tests, even in people who had openly rated them positively. "These implicit associations are the result of social values...carried by our culture, said lead investigator Claire Eneau Drapeau. "They are likely deeply embedded, and difficult to break."

How will Face2Gene influence public attitudes about children with facial differences linked to genetic conditions? I don't know the answer to that, but I think it's worth asking.

I remember going to the University of Toronto's medical library, and finding photos of children and adults with my son's condition. They were often naked, looked afraid, and had their eyes blacked out. 

What will Face2Gene, and the clinicians who use it, do to promote the humanity and beauty of people with craniofacial syndromes?

A rare diagnosis is just the beginning of a long journey for a family. It's not a precise destination or answer or solution, in the way that the geneticist's words "killing it" imply. A wise pediatrician told me early on, before we knew my son's condition: "It probably won't change the therapies and treatments he receives."

At the time, I was naive. I thought that isolating the gene changes in my son's condition would lead to gene therapy or specific treatments. I even started an international association, with another mother, for families affected with the condition and we worked with researchers. At one point, cancer researchers were interested because one of the genes is a tumour suppressor. 

I'm much more cynical and realistic now.

It sounds like Face2Gene is exciting for clinicians. I'm sure it gives them a sense of mastery in pinning down a diagnosis. I'm more interested in what happens nextto that child and family, and to how we, as a culture, view and treat people with genetically-based facial differences.

Wednesday, December 19, 2018

'What you learn about silence is that it's not so quiet'

By Louise Kinross

Craig Morgan Teicher is an American poet and literary critic whose first collection of essays—We Begin in Gladness—was published in November. Earlier this year he wrote an essay in The New York Times about what he’s learned by reading aloud with his son Cal. Cal, 11, has cerebral palsy and doesn’t speak. We talked about communicating beyond, or outside, language.

BLOOM: What are Cal’s favourite things?

Craig Morgan Teicher:
Music is definitely one of them, but more than anything, he is happiest when spending time with other people. I feel his life is animated by his proximity to people. He’s very in love with his younger sister, and he lights up whenever she’s anywhere near him. He loves going to school and being part of the chaos that is his classroom. We do a lot of music at home. I love jazz and instrumental music and we have that on all the time, and we make up silly songs on the guitar and make a racket.

BLOOM: How does he communicate?

Craig Morgan Teicher:
 Smiling is his most basic way of saying 'yes,' and his 'no' is pretty clear. It’s challenging when I try to explain what it’s like to communicate with him. The people who spend a lot of time with him can see a lot of the shades of his feelings. One of the big challenges of my life—or not challenges, but wishes—is to really understand him. I feel like I’m missing so much of what he’s actually trying to tell me. And yet I also feel like I get so much of it.

BLOOM: Could he use a communication device?

Craig Morgan Teicher:
He’s tried everything. It’s the usual problem with severe cerebral palsy that he can’t quite get his hands, his head or his foot to activate a switch. We haven’t had much success with most of what’s out there. He uses an eye gaze system with mixed results at school.

BLOOM: With my son I always found the technology was cumbersome and not nearly as intuitive and automatic as mainstream business technology. I used to liken it to my son having to go to a dictionary every time he wanted to say something, and look up the word. After a while, you give up.

Craig Morgan Teicher:
Or it’s like a dictionary with only eight words—you have to make your life work with eight words.

One of the big lessons for me with my son is the same lesson that poetry teaches—that language is fluid, and constantly changes, as words are loaded and unloaded with meaning: that meaning is pretty fluid.

So I look at my son’s way of communicating as fluid. It’s not just a yes or no, I want to do this or that. It’s a continuum of trying to express pleasure and displeasure and excitement and beckoning and pushing away. The struggle is to get further away from yes or no and get to all of the things that really make up a life.

For me, as a word person, one of the things that’s so startling about raising Cal is that it’s intensely physical in a way that no other relationship I have had, or imagined, is. I have to act as an extension of his body and his wishes, and sometimes I have to work against his wishes. That’s really hard to describe, and there aren't words for it in our language.

BLOOM: When I read your piece in The New York Times, about reading aloud to Cal, and wondering what he’s thinking, it made me think of an interview I did with British theatre director Stephen Unwin, who has a son who doesn’t speak. Stephen said: ‘I was brought up with language. I had a really old-fashioned English classical education. I’m over-educated, language is everything for me and I’m dealing with a son who has no speech. I love the boy to pieces and I’m grief stricken and that’s not a contradiction, that’s real.’ As a poet, what have you learned from a son who can't engage in formal conversation?

Craig Morgan Teicher:
 Before Cal was born, and into the beginning of his life, I thought that language was really the way that life happens, and now I see there are many ways. I’m not unhappy that there is a part of my life that exists outside of language. Music is definitely a way that Cal and I transact happiness and feeling.

I’m not a good musician, but I’m a self-taught guitar player, and from the beginning of Cal’s life we’ve made up silly songs together—sometimes with words and sometimes not. That’s a pretty great way of communicating with someone. It’s not precise in the same way that words are.

I think maybe I have enough language in my life that I don’t specifically grieve Cal not having it. I deeply grieve that he doesn’t have a choice to use or not to use words. That’s really painful.

BLOOM: I read your profile of Jesse Ball, the author of the novel Census, which includes a character who has Down syndrome, but as readers we’re not told his diagnosis. And you quote Ball saying something about how it’s impossible to write a true portrait of a person using our culture’s language for disability. Do you find that words impede our understanding of what disability is like?

Craig Morgan Teicher:
Definitely. Sometimes Cal and I will lay on the floor next to each other and stare at each other, or make funny noises. There’s a lot of holding hands that you don’t normally do with an 11-year-old, but that stands in for what we might do with words.

One of the things I’ve learned, especially watching my daughter introduce her friends to her brother, is that a lot of people go through their whole life without ever meeting a person with a serious disability.

As a culture, we're a lot more comfortable with less and less precise language to describe the lives of people living with disabilities. That makes me sad and angry—except, of course, I was the same way in that I didn’t know someone with a disability until I became a father.

BLOOM: Something I learned from my son was how important presence is. In our culture, people don’t appreciate the value of presence and being. It’s all about what you can do, and if you can’t do something, you’re stripped of value.

Craig Morgan Teicher:
If Cal hears someone he cares about walk into a room, he knows, and it’s not because he’s looking at them. He can feel the room in a way that I certainly have not learned to pay attention to. To him, presence is a huge part of what his life is, and he’s made it a huge part of what my life is. As a person who spent my childhood and youth in my head a lot, living with my son has taught me a lot about the power of just being in the presence of someone else.

BLOOM: How do people around Cal respond to his lack of speech?

Craig Morgan Teicher:
He’s a very happy person, a very joyful person, and the people who know him well are generally happy when they’re around him. He gets all the staring and weird confusion from other kids that many disabled kids get. Many grown-ups are afraid, and think they don’t know what to do. The most shocking thing for me has been watching my daughter become aware of the extent to which people stare at us, and how she feels about that.

Kids will stop and stare at Cal, open-mouthed. Some will ask ‘Why’s he in a chair?’ and we open a conversation. Others stare until their parents yank them away, or we stare back. What I want is for Cal to cross a bridge. We’ll say ‘This is Cal,’ and some kids will actually say ‘Hi, I’m whoever.’

BLOOM: I remember when my son was young that I read a lot about how you can prepare for difficult social situations by role-playing responses. For a long time I felt that was my job. But now it really depends on whether I’m in the mood. Sometimes I’m in the mood to educate, and sometimes I’m not.

Craig Morgan Teicher:
Sometimes I don’t rise to the occasion at all, and I want to make sure my daughter has that right.

BLOOM: Has Cal’s lack of speech influenced the way you write or read poetry?

Craig Morgan Teicher:
It definitely has. But poetry has as much informed the way I think about Cal as Cal has informed the way I think about poetry. Something that’s very true about poetry is that a lot of what it is about is the silence that surrounds it. It’s the stuff that’s not in it, but that is to do with it.

The thing we’re not saying that the poem implies, that the poem whispers. Silence is a big part of the world around Cal, and what you learn about silence is that it’s not so quiet and there’s all this stuff moving around in it. That insight is equally true of poetry and of people, and especially of people who don’t use words. Language isn’t the only way of communicating.

BLOOM: In your piece about reading to Cal, you note that he responds with sounds, but you can’t know for sure what meaning he’s taking away. By the end, you seem satisfied that his meaning could be a number of things. It could represent his love of your voice, or his understanding of the emotion it conveys. Or it could be his own unique way of visualizing a character when, as you note, he isn’t able to see colours the way you can. Our culture values speech as a way of demonstrating intellect. But is the meaning that a child who can’t speak, or who may think differently, takes from listening to a book as valuable as the meaning a typical child might be tested on at school?

Craig Morgan Teicher
: I don’t think the meaning a typical child might be tested on at school is particularly interesting. As a writer, the last thing I want is for someone to think about writing as a puzzle that you have to solve to get to the right answer.

I think of writing as much more like being in the room with Cal, a reader's presence next to the text, as opposed to anything that resembles testable understanding. What was fun about writing that essay was that reading to Cal had become a way of experiencing his presence and my presence next to a book.

Reading aloud was a way for me to hear the book myself, which was something that I wasn’t good at doing before. I had trouble imagining it in my head. 

I guess I’ve come to believe, though I can’t verify at all what Cal is getting, that the way he’s interacting is the ideal way. It’s to be present with a book. Certainly my own relationship with books is much more about them as good company, and as people in the room, than about getting the meaning right.

Part of what I do is interpret books in writing. I’m a book critic, but that aspect of what I do is a pretty limited way of thinking about what a relationship to reading can be.

BLOOM: What’s been the greatest joy of raising Cal?

Craig Morgan Teicher:
There isn’t any one thing. It’s just him. I’ve been surprised, especially as I’ve written about him more, that I can describe my family as a happy one, and that a lot of families I know that include a child with special needs are happy.

BLOOM: Have you written about disability in your poetry?

Craig Morgan Teicher:
It certainly comes up a lot. Cal comes up a lot. I don’t think it’s my place to write specifically about disability. I’m not disabled and I don’t want to speak for others who are. There is a very strong community of poets with disabilities who write all kinds of poems. Beauty is a Verb is one excellent anthology to start with. 

BLOOM: What do you hope people take away from your writing about Cal?

Craig Morgan Teicher: As I’m writing more about Cal I’m trying to figure out who I’m writing to. I don’t want to make someone feel that my way is the way they should do it. I want to supply some language around which people could think about this kind of a parenting journey.

Monday, December 17, 2018

This nurse earns high praise from kids

Lisa Drumonde is a registered practical nurse working with children who are hospitalized at Holland Bloorview for rehab after painful bone surgeries or life-changing trauma. She recently won the DAISY award, which recognizes a nurse that uses a strengths-based approach and combines top-notch clinical skills with deep connections with children and families. Lisa Drumonde began work almost 22 years ago at what was then the Bloorview Children’s Hospital. Hammas, 14, pictured above with Lisa, describes her as a nursing "legend."

BLOOM: How did you get into the field?

Lisa Drumonde:
When I was about 10, my family was ready to go on a trip to Disney when my younger brother didn’t feel well. My mom took him to Emergency, and they discovered a tumour on his lung. That was my first experience around nurses, and it stayed with me. I think being a sibling in that situation gave me empathy toward the siblings of the kids we work with.

After high school I went off to York University to study history. While I was there I got a job at a hospital as a weekend housekeeper. There were a number of students working there. I had a lot of interaction with the patients—who were adults. I really enjoyed being with the patients, and seeing some of the things the nurses did on the unit. I decided to change direction and go into nursing at George Brown.

BLOOM: What made you think nursing would be a good fit for you?

Lisa Drumonde:
I’m a pretty easy-going person, and I’m patient and kind.

BLOOM: How did you decide to work with kids?

Lisa Drumonde:
Everything led to kids. It was almost my fate. I initially got a job working as a pediatric home nurse at night and on the weekend. Then I was taking a certificate in rehab nursing and I did a placement with Kelly Brewer, the physiotherapist, at what was then the Bloorview Children’s Hospital. I saw they were hiring, and having the pediatric experience enabled me to get the job.

BLOOM: You usually work evenings. Do you like that shift?

Lisa Drumonde:
I love it! I can get my kids up and out in the morning and make sure everyone’s got their lunches and eaten breakfast. I have two girls—a 12-year-old and a 15-year-old. My older daughter has a chronic illness, and the evening shift gives me the flexibility to accommodate the needs of my family.

Coming to work in the afternoon helps me shift gears and be that other person—not just a mom. I get a lot of gratification from the kids and families I work with, and from being around my peers.

BLOOM: How many children do you work with on the evening shift?

Lisa Drumonde
: Usually it’s three. I’ll go into the computer and check on their care and what they’ll require, including their medications. We have the evening routine, which is dinner. Some of our kids are at a stage where they need to be walking to meals. I may do range-of-motion exercises with my kids, or showers, or wound care.

Managing pain is a big thing. Something may happen and I need to call the doctor or pharmacy or orthotics. It’s really beneficial when you have the same kids for a few shifts in a row. You get into a really nice rhythm with them. You know exactly what they need, and what motivates them. Consistency is important to families as well.

BLOOM: What’s the greatest joy?

Lisa Drumonde:
Interacting with the kids. Having a laugh: making them laugh or they make me laugh. It’s the relationship that you build with the kids and families, and the trust. I had one child last week when she first came in, and then I didn’t have her for a week. When I got her again, she’s so much stronger, and able to move from her bed better. Seeing that progression in kids is really rewarding. I love the nurses that I work with, and I enjoy working with the other disciplines too. I take my job seriously, but I like to have fun with it.

BLOOM: That’s the creative part.

Lisa Drumonde:
Yes. And I like the teamwork. I feel we’re very strong on the specialized orthopedic and developmental rehab unit (SODR) in regards to having each other’s back, and working together.

BLOOM: What’s the greatest challenge?

Lisa Drumonde:
When families are here because their child has been through a traumatic experience. Families are very stressed and trying to cope with what’s happened. Helping to support the family through that is probably the hardest thing, because I want to say and do the right thing to help them. 

BLOOM: How do you manage that?

Lisa Drumonde: I feel nurses do a good job of supporting each other. I know my manager is always available to support me, too.

BLOOM: What emotions come with the job?

Lisa Drumonde:
Mostly joy. I feel very grateful to be working here and to be working with the kids. The parents trust us to take good care of their kids, to get the right meds, and to do the right things to help both child and family. Sometimes there’s sadness. I really feel for some of the families. I have to put up a bit of an emotional wall sometimes, or it can affect you too much.

BLOOM: I remember in our narrative nursing group, which you were in, a number of nurses spoke about times they felt helpless.

Lisa Drumonde:
Yes, when children have nerve pain it’s brutal. The medications that can help it usually take a couple of weeks to be fully effective. It’s hard to see a child in so much pain, and even strong analgesics don’t help.

BLOOM: How do you cope with that?

Lisa Drumonde:
I talk to my nursing colleagues. I get their advice and their opinions. They may have good suggestions, not only to support me, but in how to help the child. The biggest thing for me is talking to others who understand.

BLOOM: I’ve always felt that nurses, because they spend so much time with our families, have the opportunity to develop close relationships that can give them unique insights.

Lisa Drumonde:
With me, being here as long as I have been, I’ve noticed in the last year or two a certain confidence within myself. When I go into a patient room now I feel very comfortable and confident. The families sense this, which is a positive way to start my relationship with them.

BLOOM: What qualities are most important in a nurse?

Lisa Drumonde:
Patience, kindness and understanding. Being flexible, but also having the right amount of firmness, too. Time management is important. You need to be innovative and knowledgeable.

BLOOM: How do you innovate?

Lisa Drumonde:
We’re seeing more and more kids on the unit who have anxiety. So finding a way where you can help the child to trust you and be comfortable with you. If you need to do a dressing change, finding a way where you can lower their anxiety. It may be doing something silly, or funny or singing. Sometimes iPads are a helpful distraction.

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

Lisa Drumonde:
One thing we talk about on the unit a lot is having more psychological support for our kids who have gone through sudden, traumatic experiences. For example, we see a lot of kids who were involved in a motor vehicle accident, or who have a spinal-cord injury.

BLOOM: What did you think when you heard you’d won the Daisy award?

Lisa Drumonde:
I was overwhelmed. I had no idea I’d won it. It all happened on the unit. Julia was there and other upper management people, and the kids and families and the staff. I was given a statue that was carved in Africa. It’s really special. Receiving the Daisy award was a truly meaningful and touching moment in my nursing career.

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.