Friday, October 12, 2018

My daughter is not an animal at the zoo

By Christina Herbers

We saw pandas! We saw lemurs! We saw bears and zebras and hippos.

We were just a family visiting the zoo.

And then we heard it: “Mom, I don’t like her face.” And, “Dad, what is that face?” And we saw you shooing your kids away from us, as if we were somehow contagious. And oh, the staring!

Yep, this still happens to us. In fact, it happened on our summer family trip to the Calgary zoo.

On a brighter note, there was an older man who came up to my husband and shook his hand. He told him that the umbrella that we use to shade my daughter Jaina’s eyes from the sun had shifted, and that her eyes were in the sun. To him, I say thank you. Thank you for not being afraid of us. Thank you for seeing us. Thank you for holding a door open for us. Thank you for teaching your kids and grandkids that it’s okay to talk to us! 

Questions are a natural part of human behaviour. So maybe it’s not your children's questions that are the problem, but that you don't want to hear the answers?

How can your child know the answer to “what is that face?” if you don't ask me? If you ask, I will tell you about the car accident we were in when I was pregnant with Jaina. She isn't able to move her face that well because of her brain injury. She isn't able to smile. She isn't able to close her mouth. She suffered from a brain injury before she was born.

She has always been this way. 

She is also mellow and calm and quiet.

Talking about why my daughter is different from the rest of us may be natural for your kids, but please know that we hear you. Respect us.

Teach your kids that we are all different. Different colours, sizes, genders, sexual orientations, ages, beliefs and abilities. Teach your kids that it’s okay to be different. I can’t think of any two people who are exactly the same. Can you? Even the pairs of identical twins that I know who look the same have their own individual personalities.

Please don’t treat my daughter like a caged animal at the zoo. Don’t stare and comment and point and judge. Talk to us. Ask your questions, and take the time to listen to our answers.

Let’s work on seeing each other for who we really are. Because in the end, aren’t we all just people, trying to make it through this journey called life?

Share your thoughts below. I’d love to hear from you!

Did you like this story? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

Tuesday, October 9, 2018

Weight 'talks' leave autistic youth feeling blamed, shamed

By Louise Kinross

Obesity in children is one of the most serious public health challenges according to the World Health Organization. Children with autism are more likely to have higher weights because they’re often less active, can have unusual eating patterns, and may take medication that causes significant weight gain.

The literature encourages doctors to talk to children about the risk of unhealthy weight, but to date there’s been no research on how to do this without harming a child’s self-esteem. A new study in the journal Autism is the first to ask autistic youth themselves what it’s like to be on the receiving end of clinic talks about their weight.

Researchers interviewed eight youth seen at Holland Bloorview’s psychopharmacology clinic who take atypical antipsychotics to treat irritability and aggression. These drugs can cause a pound of weight gain a week, probably because they cause insulin resistance.

Most of the children aged 10 to 18 were interviewed in their homes after receiving a social story that explained who the researcher was, and what to expect from the interview. Patrick Jachrya was the lead author on the paper, which comes from a research program headed by senior scientist Amy McPherson. We talked with Amy.

BLOOM: Why was there a need for this study?

Amy McPherson:
This study came about after a few years of Evdokia Anagnostou and I talking in the coffee lines at Holland Bloorview about the work I do on weight in kids with disabilities.

Evdokia, who co-runs our Autism Research Centre, felt my work was much needed in working with children with autism, especially those she sees in the psychopharmacology clinic. One of the side effects of the drugs these children are on is considerable weight gain. Evdokia was having conversations with children and families about this and felt she didn’t have the training or support to know how to approach these talks.

BLOOM: What were the key results?

Amy McPherson:
Generally the kids found weight discussions very anxiety provoking. They were very nervous about having these conversations, especially if the topic came out of the blue and they weren’t expecting it. Trust was an important part of a relationship to have these discussions without distress.

Children had often seen many health professionals before coming to Holland Bloorview. Unfortunately, all participants described having experienced weight stigma from clinicians (who very likely didn’t intend it). They said they felt the stigma, and it made them afraid to talk about their weight because they were expecting to be made to feel very badly about it.

BLOOM: How does weight stigma in the wider world influence these talks?

Amy McPherson:
It’s fair to say that the youth had internalized the societal message that smaller bodies are better and desirable and healthy. This had often been reinforced at home by their parents, and also by their doctors and nurses, who they see quite regularly. That’s the world we live in. There was some evidence that they had started to perseverate on losing weight, and that it became a preoccupation.

BLOOM: To what did the doctors attribute their weight gain?

Amy McPherson:
We know that many doctors and nurses assume that kids are eating too much and not exercising—even though medication likely has the biggest effect. Children were made to feel lazy and blamed. They feel like they’ve failed, because they’re being compared to typical weight charts. Families might be told ‘your kid is just off the charts.’

BLOOM: Even though those charts aren’t made to reflect weight gain you would expect as a drug side effect?

Amy McPherson:
Yes. It’s viewed as a personal failure and within the control of the individual. Even though we know that weight is affected by so many things beyond the individual.

BLOOM: Some of the participants described professionals scolding them and trying to scare them. Why doesn’t that approach work?

Amy McPherson:
How long have you got? We know many health-care professionals think that they can shock people into losing weight. The science tells us that this approach doesn’t lead to weight loss.

BLOOM: What does it lead to?

Amy McPherson:
Weight gain. It can increase poor eating habits and overeating and binge-eating. And when children feel blamed and shamed, they don’t feel like going to the gym and working out. They avoid people. It also works on the stress hormone circuit, so that can lead to weight gain. Blame and shame have absolutely the opposite effect of what health professionals intend.

BLOOM: It struck me that the youth described incredible anxiety about their weight, and especially if they didn’t realize the doctor was going to bring it up.

Amy McPherson:
Kids with autism often feel quite comforted by routine and knowing exactly what’s going to happen, so this is a particular population that may benefit from a more structured approach to talking about weight.

BLOOM: How would that look?

Amy McPherson:
The number one question is to ask permission. ‘Is it okay if we talk about your weight today?’ Or even better, something like ‘Is it okay if we talk about how you can stay healthy and energized?
 If they say no, you can ask if it’s okay to talk to their mom about it. By focusing on growth and health, instead of weight, clinicians can make it a regular part of discussion and then it’s expected, and it takes the stigma out of it.

BLOOM: It was fascinating that the youth said it made them angry that they perceived doctors and nurses as trying to change them.

Amy McPherson:
We’re always trying to fix and change. One of my favourite lines is when clinicians say: ‘All you have to do is this…’ By taking that approach we’re putting the sole responsibility onto the individual, and not recognizing the many uncontrollable factors that lead to higher weight. We don’t know how to treat childhood obesity generally, so we’re often very unrealistic about what we’re asking children with disabilities to do, given the complexity of their lives.

BLOOM: Yes, if losing weight was a simple matter, there wouldn’t be an industry making billions of dollars off it.

Amy McPherson:
We’re often asking families to fundamentally change how they function and not recognizing what a huge thing that is.

BLOOM: I guess in many cases families feel that the entire family has to change their eating habits?

Amy McPherson:
Yes. While promoting healthy habits across the family isn’t necessarily a bad thing, with children with autism, food is often used for good behaviour. So if a family has found a way to manage behaviour so that everyone can be happy, we’re asking a lot to take that away from them.

Families feel profoundly guilty that they’ve given their approval for their kid to go on medications that lead to huge weight gain. And to be fair, heath professionals often have a lot of moral distress that they prescribe these drugs. Unfortunately, they’re often the only thing that’s reduced a child’s self-harming and enabled them to function, for example, to go to school.

BLOOM: So there isn’t really an alternative. Youth in your study said they felt negative when professionals used the words fat, obese and overweight to describe them. Interestingly, they said when language like that was used, they immediately tuned out what the person was saying.

Amy McPherson:
We’ve done quite a lot of work on language in our interactive casebook on how to have conversations with children about weight and health. Phrases like higher weight and bigger body, which are purely descriptive, may be helpful. But there isn’t one word that you use with everyone. Clinicians need to talk to families about terms they find acceptable.

BLOOM: In what way did the youth feel clinicians stigmatized them?

Amy McPherson:
By making it seem like a personal failing, and the perceived assumption that they were being lazy, eating bad food and not exercising. This was upsetting given the huge role of medication in their higher weights.

BLOOM: These medications were causing dozens of pounds of weight gain, right? Now just a few pounds?

Amy McPherson:
Yes, for some kids it could be an increase of 20 to 30 pounds. There are risks associated with higher weights: they can cause a metabolic syndrome that’s a precursor to chronic conditions like Type 2 diabetes or heart conditions. But the discussion can’t centre just around those extreme cases. People of many body sizes can be healthy.

BLOOM: How did the clinicians usually tell kids they could lose weight?

Amy McPherson:
Eat less, move more. All you have to do is…

BLOOM: The study talked about how these children became obsessed with their higher weights, and this made them feel bad about their bodies.

Amy McPherson:
Many had huge self-esteem issues. They felt they had to achieve a perfect weight. They knew it would please people if they lost the weight, but they couldn’t do it.

BLOOM: What advice can you give health professionals on how to approach this?

Amy McPherson:
In our casebook, we list a number of sentence starters that clinicians can try out. Instead of talking about a child’s ideal weight on the Body Mass Index (BMI) chart, they can talk about a child’s best weight—which is the weight a child is at when they’re living a healthy life that they truly enjoy. They need to know that there are many ways of being healthy.

BLOOM: What are next steps for the research?

Amy McPherson:
We’re using the casebook with our autism clinicians here and asking for their feedback on how they’re using it in their clinical practice. In the future, we’ll do a broader implementation study involving a number of different children’s clinics.

A related study in Autism Research includes interviews with the same youth, as well as their parents and health professionals. Notably, professionals said they didn’t have sufficient training to feel confident in identifying and addressing higher weights in children with autism.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

Saturday, October 6, 2018

How vulnerable brains find workarounds is this scientist's passion

Photo and interview by Louise Kinross

Dr. Tomáš Paus is fascinated by brains—not individual brains, but the study of hundreds of thousands of them. As a neuroscientist, he studies how our genes, and our physical and social environments growing up, influence our brains. Why do some children’s brains find workarounds to compensate for early adversity—such as premature birth—while others don’t? And in children with brain-based disabilities like cerebral palsy or autism, is there a way to build resilience that can aid brain function as the child grows?

Tomáš is the new director of Population Neuroscience and Developmental Imaging at the Bloorview Research Institute. His research program will rely on an accessible and child-friendly MRI coming to the hospital in 2019. Tomas did six years of medicine and a PhD in physiology in the Czech Republic, where he grew up, before moving to Montreal for a post-doc fellowship in cognitive neuroscience. We talked about his move into the world of children’s rehab.

BLOOM: First of all, what is developmental neuroimaging?

Tomáš Paus:
 It’s imaging the brain, from conception onwards, and there are no strict boundaries on what we call development. Some people are talking about development when the brain is in the womb, others say the first three years of life are most important. Others say development is certainly happening in adolescence. In the context of Holland Bloorview, we’re talking about the first two decades of life.

BLOOM: You've come from Baycrest Centre. What research were you doing there?

Tomáš Paus:
 I worked on adolescence, mostly by studying children from mainstream high schools, some of whom experienced early adversity—for example, whose mothers smoked during pregnancy.

Many people have experienced an early adversity, and their brains overcame it in some way. Is it because they had ‘good’ genes or a good supporting environment at home, or a socially supportive environment in their community?

What is it that will maintain someone in a healthy trajectory of brain development despite experiencing adversity? If we can learn what this resilience is, perhaps we can supplement it to people who don’t have it naturally.

BLOOM: Which population will you work with here?

Tomáš Paus: 
We don’t know yet. We’re not going to focus on a specific diagnosis or disability, but a type of adversity that may result in many different outcomes. For example, very preterm birth—if you’re born at least two months before term—puts you in a more vulnerable position.

We know that some children handle it well, while some children develop immediate disabilities such as cerebral palsy, and some may have a higher likelihood of developing autism. Some children may be fine all the way into their teens, and then be at higher risk of developing depression, bipolar disorder or psychosis. Other children may be fine on those lines, but have learning disabilities.

One idea is to develop a large cohort of 10,000 kids, between the ages of five and 14, that we would follow for 10 years. A group of them would have been born very pre-term, another group less pre-term, and another group at term.

BLOOM: Has this been done before?

Tomáš Paus:
 I’m not aware of any large, population-based study of children who were exposed to early adversity and may have a variety of outcomes that range from healthy brain development to having autism or cerebral palsy.

BLOOM: Why is there a need for such a study? 

Tomáš Paus: Some
 kids—no matter what you do at the time of an event like hypoxia of the brain—will have damage. Now we need to work out what we can do, at any time of their life, to help the brain achieve its potential. When the brain has to find a detour, some brains find the detour more easily than others. What does it depend on?

Does it depend only on the biology of the brain and the genes of the individual? Probably not. Does it depend on the family and what they’re doing and how they’re doing it? Most likely. Does it depend on the peers that the kid is encountering through childhood and adolescence, or not encountering, if there is social isolation? Most likely.

But we don’t know how it works, and I want to know how it works, because then we may be able to use this knowledge and provide a supplement. Perhaps it’s an app for parents, or a school policy that will improve integration, or a particular type of support at a particular time in the child’s life. It may be a technology that helps kids with disabilities to function better.

BLOOM: Isn’t there a danger in implying that resilience is largely up to the individual, or family? I’m thinking of some doctors who pushed back against the idea that burnout could be solved solely through building their resilience, rather than changing the system. 

Tomáš Paus: 
Very good point. That’s why we need to emphasize that the sources of resilience are at multiple levels. Some of them may be at the level of the individual. Others may be at the level of the household, and others are at the level of the community and education system. And even at the level of the individual or the family, you don’t want to have solutions that require their effort.

I know I’m lazy when it comes to exercise. So the only way I can build it into my schedule is if I do it automatically. So every day I walk from Lawrence subway station here and back, and that gives me my 12,000 steps a day. So the solutions for resilience have to be really smart, and nudge or guide you in a way. It can’t be that something beeps at you and says ‘Please do this.’

There's a book called Nudge that talks about how we can help people make better health choices by nudging them in the right direction. For example, in a subway, when you have a set of stairs and an escalator, how do you nudge people to take the stairs? You paint piano keys on those stairs and, somehow, subconsciously, people find it interesting to be walking up piano keys and it works.

BLOOM: You’re not suggesting that through resilience we would somehow remove a disability are you?

Tomáš Paus: No, we will not be able to remove the disability, absolutely not. But we may be able to find workarounds for living with disability. For example, take the work Tom Chau is doing here with external devices that help kids with disabilities to function better. We may be able to learn how those devices interact with the brain, and affect the brain, over months and years. We may be able to suggest how to tinker with a device to increase its usefulness.

BLOOM: Many people look at something like autism or intellectual disability now as a difference that has value, not just as a deficit. Will your work just measure kids’ brain function in conventional ways?

Tomáš Paus: 
There are current population studies with strong imaging components that are focused on the general population. They’re focusing on normal kids. We’re moving in the opposite direction.

We're opening the range of variability, and the range of possible outcomes, and there will be no judgment. I was just interviewed on CTV News and the reporter asked: ‘Will you be studying atypical brains?’ I said I don’t know what is atypical or typical. I don’t want to make any judgment about what’s normal or not normal. It’s the diversity that will tell me how it all works.

BLOOM: What’s the greatest challenge of this work?

Tomáš Paus:
 The first is we need people to get excited about it, because it requires a commitment of 10 years. This would not be a study where you show up once.

We would bring the kids back every two years to do scans and answer questionnaires. We’re thinking about innovative ways to collect information on the behaviour of the kids and families by having them wear technology. So perhaps, with their permission, they would wear a smartphone that would collect information.

BLOOM: Why were you so interested in the brain in the first place?

Tomáš Paus:
 Who wouldn’t be? It came to me through psychology and psychiatry. I was interested in people’s behaviour. As a teen I read a lot of novels about people’s behaviour. I grew up in a small town not far from where Sigmund Freud was born and lived for a few years. But I think it was the human behaviour through novels that really got me going.

There was a large psychiatric hospital next door to where I grew up, and I would pass it every day. My teacher of biology in high school saw my interest, and encouraged me to go and talk to a new senior physician at that hospital. The physician said he’d just read about how Vitamin C can be good for attention, and asked me if I’d like to do a study on it. My father worked for a pharmaceutical company and helped me to set up the placebo pills. And my mother helped me with typing things up.

BLOOM: You mentioned that your wife, Zdenka Pausova, is also a researcher.

Tomáš Paus: 
Yes, she works at SickKids. Her primary interest is in cardio metabolic health. She’s an expert in genetics, but now she’s looking at the relationships between cardio metabolic health and obesity and brain health in teenagers and adults. She has a big National Institutes of Health grant to look at the relationship between inflammation induced by obesity and how it can potentially induce inflammation of the brain.

BLOOM: What are your first impressions of Holland Bloorview?

Tomáš Paus: 
It’s a very cheerful environment, and I keep running into people in the hallways and talking about things that interest me and interest them, so it’s very interactive. There are little barriers between the hospital and the research institute, which is impressive. It’s amazing how strong that integration is.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

Thursday, October 4, 2018

U of T course makes room for kids who grow 'sideways'

Photo by the University of Toronto

By Louise Kinross

A couple of years ago I connected with Anne McGuire, an assistant professor in the Equity Studies Program at the University of Toronto, after she co-wrote a critique of the Hospital for Sick Children's SickKids VS ad from a disability perspective.

Since then I learned that Anne teaches 
a class called Disability and the Child. It draws on history, psychology, neuroscience, policy studies and the arts, as well as critical theories of race, class, gender, sexuality and disability, to explore how disability is largely viewed in today's culture as a threat to the goodness of a 'normal' childhood. "What alternate depictions and narratives of disabled childhood exist and what can they teach us?" asks the course outline.

This is an undergraduate course, but it struck me that it would be valuable for medical and other health-care students, and for anyone working in the field of children's rehab. We did this interview by e-mail.

BLOOM: Why is there a need for your course?

Anne McGuire:
I teach a number of disability studies courses in the Equity Studies Program at New College U of T. For the most part, my other courses tend to focus on adult worlds
we talk a lot of about disability rights and justice activism, disability arts, culture and representation, disability histories as well as more contemporary debates. Despite this focus on adult issues and struggles, the disabled child is nonetheless a key figure that both haunts and motivates these struggles. Developing this course was an opportunity to explore the relationship between how we imagine children and how we build our world. 

The child is often treated as a figure or symbol of innocence, purity, and simplicity. The child is understood to be ever vulnerable, and because of this, always in need of adult protection. Many scholars have described how the child figure works as a powerful political tool, one that is commonly used to argue for a wide range of different social outcomes.

Paying attention to the child as a powerful cultural symbol can teach us about how our society is put together. By studying the child figure, we can learn a lot about what adults think and about how they create hierarchies in the world.

Disability studies tells us that disabled peopleincluding disabled children and youthare often placed very low on social hierarchies. I developd this course in the hopes that thinking about the child as a figure or symbol can help us to better understand the ways our world is made inaccessible and exclusionary for a great many disabled people, including disabled kids. 

BLOOM: You mention in the course description that disability is often seen as a threat to the presumed goodness of a normal childhood. Can you give some examples?

Anne McGuire:
In class, we’ve been talking about how disability is often constructed in polar opposition to the notions of purity and innocence that commonly define the time of childhood. 

In mainstream, popular culture, disability is very often talked about as something which taints or takes away disabled children’s childhoods. For example, in my book War on Autism, I discuss how, in the first decade of the 21st century, it was very common to encounter advocacy campaigns that depicted autism as a kind of invader, or as something that threatened or stole otherwise neurotypical children. New York University’s 2008 Ransom Notes campaign is a really overt and glaring example of this: '
We have your son' read a campaign ad designed to look like a ransom note. The note was signed 'autism.' 

These days, we’re seeing disability campaigns that are a lot more positive and hopeful in tone. Louise, you and I have both written about the memorable 2016 Sick Kids VS. campaign ad, which depicted sick or disabled kids fighting back against conditions ranging from cystic fibrosis to cancer to autism. While this spot is much more upbeat and hopeful, I worry that the underlying message is not all that different from more glaringly problematic campaigns like Ransom Notes.

In both NYU’s Ransom Notes and Sickkids VS, disability is framed as that which prevents pure and innocent kids from realizing their potential. While, of course, there are many childhood disabilities and illnesses that are life threatening and that do threaten to eclipse a child’s long-term future, there are also many disabilities and illnesses that are chronic and ongoing.

These conditions are almost always a central aspect of a person’s lived experience, and sometimes even an important part of their identity. The idea that disability or illness is naturally or inherently devoid of future and potential is very problematic for disabled people of any age. It stops us from paying attention to the complex, and often very radical, ways that disabled and sick kids and adults are negotiating their bodies, minds, and worlds.

BLOOM: One of your readings looks at children in the future and “investments in human capital and waste.” How do perceptions of a child’s value change when they may not be able to be productive in conventional, money-making ways?

Anne McGuire:
This notion of the ‘child as future’ often invites a kind of economic way of thinking about children and childhood
this sense that we need to invest in children in the here and now to secure more prosperous futures for them and for us all. 

I hear this economic logic everywhere these days and it's often very literal: children’s development is made synonymous with the production of human capital.

Just a quick example of this. In class we’ll be taking a look at the well documented association between extended breastfeeding and increased infant brain development. 

According to the research, breastfeeding promises to also boost cognitive, motor and language skills, and even raise kids’ IQ’s. A number of studies have even suggested that extended breastfeeding might lead to greater productivity of the breastfed individual later in life, boosting their earning capacity and, with it, their chance at a more economically successful future.

Putting aside the debate as to whether or not ‘breast is best,’ what’s interesting is the way this research frames good (i.e., normal or beyond normal) child development as the outcome of good parental (read: mothers') choices. What's also interesting is how normal child development has become deeply entangled with a nation's economic development.

Looking at how the breastfeeding research has been adopted by government and other agencies, we can start to see how a child’s normal development is not only being framed as a parent's private obligation to their child, but also as a kind of civic responsibility.

This economic way of thinking about children’s developing bodies and minds is really harmful when it comes to kids who develop in ways other than the norm. 

Too often, the atypically developing body or mind is framed by researchers, policy makers, politicians and the media as just too-costly, or as a draining on the public purse. 

The underside of notions about human capital are ideas about human waste. In economic terms, those disabled people who do not, choose not or cannot contribute in economically profitable ways, are very often cast as burdens. Of course, there are many other non-economic, yet valuable ways of contributing to the social whole! What and who do we miss when we only measure human contribution and value in monetary terms?

BLOOM: Do you talk in your course about hierarchies of value within disability? That some disabilities are seen as being more valuable than others? And that there is stigma even within the disability community?

Anne McGuire:
I think this question links back to the last one. We live in a world that seems to measure and value people in general, and disabled people in particular, in terms of their capacity to act as producers and consumers within a capitalist economy. 

This means that a disabled person who can near seamlessly blend into their school or workplace, who does not ask for too many accommodations or cause too many disruptions to the productive flow of a school or work or social environment, might be readily celebrated, welcomed and included. However, the culture of disability inclusion is not hospitable to all disabled people. This division exists, as you mention, even within disability communities.

We talk a lot about the existence of these hierarchies of privilege and oppression and about how they continue to operate within disability communities and within the discipline of disability studies itself. We also discuss how we might redress this unevenness. 

Disability justice activism has placed an important emphasis on cross-ability organizing and on ensuring that our disability scholarship and activism is responsive to those communities of disabled people who are the most, and multiply, marginalized.

BLOOM: What themes in your course might be eye-opening/useful for parents of children with disabilities?

Anne McGuire:
Invariably, we end up talking a lot in this class about parent culture, and about how parents are often framed by society as solely personally responsible for their child’s future. This is true for parents of disabled and non-disabled kids alike, but parents of disabled kids may face unique and heightened social scrutiny over their parenting choices.

We talk about the common idea that parents can and should always be working to ensure their child’s normal (or at least more normal) development by making “good” choices (e.g., by exposing their child to classical music in utero, buying organic foods, seeking out private therapies, or buying developmentally stimulating toys).

This approach to child development seems to promise that all kids can and should grow up to be astrophysicists (or whatever society deems as its ideal), if only parents expose them to culturally enriched experiences or the latest in development toys.

We talk about the sheer pressure this 'consumer choice' model of parenting puts on all parents. Not only does this way of thinking assume that all parents and kids agree on what counts as a good future, it also draws our attention away from very real social and structural conditions that often make it difficult for disabled people and their families to negotiate and thrive in their communities. Often, good futures are less determined by where our bodies and minds fall on a standard developmental timeline, but by the accessibility of our schools, homes, social spaces or workplaces, or by the quality of our community supports or the availability of respectful medical care and personal attendants.

Not all kids are going to grow and develop in the same way and that’s not a bad thing! Social ideals are very often built to exclude ordinary disabled kids and people more generally. One of the central premises of disability studies is that disability is itself valuable to both individuals who live with it, as well as to the social whole. 

The assumption that atypical development is a state simply to be avoided or fixed or enhanced flies in the face of the many disabled people (and their parents) who speak openly about the ways disability has enriched their lives.

Of course, when I say disability is valuable, I’m not discounting the very real struggles faced by disabled people and their families. And I don’t think there’s anything wrong with buying organic, or exposing your child to music in the hopes that they will one day turn out to be a great musician! What becomes problematic is this idea that there is only one way to be great or healthy or successful, or that a particular set of abilities is a prerequisite to having access to a good life.

BLOOM: Do you have a favourite topic to teach? Why? 

Anne McGuire: I’ve been doing some writing (with Prof. Kelly Fritsch at Carleton) on disability and genetic risk, and am really looking forward to the prospect of bringing some of this research into the class when we look at genetic narratives of the child and the current debates about tailoring educational curriculums and environment to a student’s genetic risks profiles.

I’m also really looking forward to tomorrow’s class, which is called Child’s Play! We’re all bringing in an artifact of childhood
be it a toy or a piece of clothing or an object that is commonly used by or with children. Our group task is to read or interpret these objects for how they anticipate a particular kind of child-user. What would a course on the child be without a few opportunities to play? 

BLOOM: Why did you get interested in disability in the first place?

Anne McGuire:
I have a disabled sibling and so I think that has made me more attuned to the ways our society thinks and speaks about disability. I found a home in disability studies because of a series of experiences and relationships, and I continue to be invested in understanding disability as a relationship between bodies, minds and their environments. A byproduct of thinking about disability as a relationship is that all of our bodies and minds are implicated in disability politics, albeit in different ways!

BLOOM: What have you learned from teaching the course?

Anne McGuire:
I’ve come to better appreciate just how important and central this figure of the child is to the making of adult worlds, and how cultural ideas of the child shift and change. What the child is and what it means is very political. 

We have to ask: how do we define 'child?' Which kids are not readily recognized as kids, and which adults are cast as perpetually child-like? How does society readily mobilize to protect certain children from all manner of risk, while at the same time, refusing to protect other kids from social, political and state violence? 

I've been surprised by how the students have harnessed the idea of the child as an entry-point for all kinds of important discussions about equity: they have shown me how the child pushes us to address questions of racial justice, decolonization, class politics, and, environmentalism, immigration, gender politics and, of course, underpinning this, questions of disability rights and justice.

Of course all of these justice issues and social phenomena have very real, material consequences in the lives of actual children. And so the task before us is to think about how we might use what we’ve learned to work for a world that is more accessible and welcoming to, and for, disabled youth and kids.

BLOOM: Have you seen any significant changes in mainstream talk about disabled children?

Anne McGuire:
Back in the early 2000s, when I first started collecting examples of representations of autism that were being circulated by advocacy and awareness organizations (what would later become the basis of my PhD research), there was a very uniform and widespread sense of tragedy, fear and doom that was being communicated. 

At the time, autism advocacy routinely depicted autism as a kind of social menace or evil villainsome 'thing' that threatened children and their families, something that should be lessened, cured and/or eliminated at all cost.

Over the past two decades or so, mainstream representations of autism have changed quite a bit. These days, we are most likely to encounter more positive campaigns focused on inclusion, spectrums and neurodiversity. While the tone and tenor of the conversation has changed, I worry that the emphasis on child enhancement and normalization is still very present. 

We're seeing disabled children included in mainstream ad campaigns and celebrated in many facets of this culture
for example, the 2018 Gerber baby is a child with Down syndrome. I’m really happy to see these developments, but I still think it’s important to question which disabled kids are readily included in mainstream celebrations of diversity, and which continue to be left out.

When it comes to childhood disability, it's common to talk in terms of classifications like low and high functioning, and severe or mild. These divisions, unfortunately, continue to produce moral hierarchies of better and worse ways of being disabled. All too often, the more positive campaigns and mainstream representations of disability celebrate the so-called high functioning disabled child, or the child who can approximate society’s normative ideals. 

I admire Holland Bloorview’s latest Dear Everybody campaign
including the ad with the image of a teenage girl who uses a wheelchair and the text: 'This is what a storyteller looks like.'  On the one hand, it asks viewers to attend to the ways disabled youth are flourishing in, and with, a wide array of bodies and minds, while, on the other, naming and pointing to social conditions like discrimination and inaccessibility that can compromise this flourishing.

BLOOM: Does your course examine both intellectual and physical disability in children?

Anne McGuire:
I’ve tried to make sure that my course readings address a broad range of topics and lived experiences. Perhaps, because of my own research background, the course this year is focused on neurological, genetic and psychiatric disabilities, as well as notions of neurodiversity. For example, we're reading work that addresses the cultural politics of autism, ADHD, and various psychiatric labels given to children and youth.

We look at the media surrounding the outbreak of the Zika virus a few years ago in Central and South America, and critically engage with the reports and images that emerged of infants with microcephaly.

There are weeks that look at the racial and gendered politics of school streaming, and the over-representation of students of colour in special-education classrooms. We key into contemporary debates around genetics and education and ask what this might mean for disabled kids and youth as they negotiate already inaccessible school systems. We also look at popular debates about the over-diagnosis of children and youth with psychiatric labels.

BLOOM: Isn’t the academic world problematic for people with intellectual disabilities?

Anne McGuire:
The last time I taught this class, we had a number of pretty interesting discussions about the ways we, as a society, value intelligence. Intelligence has, for a long time, been used as a means of creating hierarchies of people. This was deeply influenced by the rise of eugenics in the 19th and early 20th centuries, with its racist, classist, sexist and ableist fears of the so-called 'feebleminded.'

We talked about the everyday ways in which we might reaffirm the superiority of conventional intelligence over other ways of knowing. These kinds of questions are, of course, especially relevant in the context of the university, and somewhat ironic given that students in the class are graded on their individual intellectual outputs.

One conclusion was that we need to attend not only to the ways intellectually disabled people are made absent from academia (which is certainly important), but also to the ways intellectual disability is present within the university. As a class, we read texts and screen films and podcasts written or created by people with the label of intellectual disability. There have been some students in courses I have taught who have shared that they were given the label of intellectual disability in their childhoods. 

Many students in disability studies speak and write about their encounters with special education. Other students are parents of kids with intellectual disabilities. All of these students carry their perspectives and experiences with them into our classroom.

Listening to, learning from, and being changed by these diverse experiences and perspectives offers us opportunities to push back against conventional assumptions that intellectual disability is incompatible with university education, and to imagine and practise a more accessible university.

BLOOM: Recently there’s been a big social media campaign with the hashtag #docswithdisabilities. But every time I read about it, I can’t help thinking that they’re talking about physical disability. I sat at a conference about how cultural devaluing of kids with disabilities may compromise their care, and a neonatologist stood up and said: 'There is a feeling among my colleagues–an unspoken and probably unconscious bias–between physical and mental disability. Sometimes neonatologists think if you're not perfect, mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.' How, and will, that ever be challenged in the academic world?

Anne McGuire:
We live in a 21st century world that privileges the mind/brain. This idealization of the brain or the mind marks our time as somewhat different from, say, the height of the industrial revolution or even the WWII era, where physical agility and strength was the mark of the ideal body. Technologies today mean that some physically disabled people are able to fit, nearly seamlessly, into their school, work and home environments (though certainly not all or even most, and the vast majority of disabled people worldwide don’t have access to these technologies).

Disabled people who might be classed as severely intellectually disabled or low functioning
people who, in other words, do not fit seamlessly into the normative requirements of school or work or homeare disproportionately and acutely vulnerable to systemic and interpersonal discrimination and even physical and psychological violence.

This troubling fragmentation of the disability community into those deemed to be deserving of life, and those deemed to be better off dead, has long been challenged by scholars and activists in disability studies. Of course there are really important journal articles and books written on the topic, but I think what makes me the most hopeful is that these conversations come up regularly in the disability studies classroom. 

Disability justice writer and activist Eli Clare writes that we need a disability studies that always and firstly 'points us towards justice.' Our students are so thoughtful, incisive and critical and when they move on to pursue their careers, or as they simply live in the world, they carry forward their questions and experiences, challenges and insights.

BLOOM: You and I spoke about the new Nike ad with Colin Kaepernick. The campaign has brought in $6 billion for the company, so it appears the public loved it. What message do you think it sends, why is this such a popular message now, and why is it problematic?

Anne McGuire:
A big part of the Disability and the Child course is dedicated to thinking about the fact that kids (disabled and non-disabled, alike, I think) are expected to not only be 'normal' or average but rather to be 'extranormal' or 'better than average' in all ways, all the time. 'Lose 120 pounds and become an iron man
after beating a brain tumour' says Nike spokesperson Colin Kaepernick in the ad. Kaepernick is himself a very powerful voice here, as he's lived the effects of widespread systemic racism. 

There’s something really compelling and empowering about this ad, and its promise that freedom and justice and equality are simply ours for the taking. And yet, we know that losing 120 pounds or becoming a high performance athlete, these things are not only or simply a matter of decision: body size, access to athletics, the capacity to excel in athletics
these things are deeply influenced by, for example, social class, genetics and a variety of other social and biological factors. 

'Beating' cancer almost never comes down to personal choice or positive outlook. The Nike ad seems to suggest that everyoneand maybe disabled people and others who face social injustice in particularneeds to be superhuman as a means of achieving social equality. I would question this idea that social justice only can be achieved when everyone has the freedom to be one thing, or even a limited range of things. For me, justice looks more like moving together with, and across, and towards our differences. 

BLOOM: Was there ever thought given to making your course available to medical students?
Anne McGuire: The courses I teach are housed in the Equity Studies program, which is an undergraduate program, and so I don’t often have the opportunity to cross paths with med students on campus. 

That said, I have former students who have gone on to medical school, nursing or occupational and physical therapy programs. I’m glad for this. I think a background in disability studies is incredibly valuable and really essential for people doing work in the health and medical fields. While disability studies certainly critiques the medicalization of disabled people, I think the field has an important role to play in pushing for more accessible healthcare for disabled people. I’m always supportive of conversations to explore more options in this area.

BLOOM: Your last reading on the list you sent is called Growing toward a question mark. What is the question mark?

Anne McGuire:
The title of the last week of class refers to a beautiful piece of writing by queer theorist Kathryn Bond Stockton. In her book, Stockton is concerned with the queer child, or the child, she says, who develops non-normatively–who is out of pace or at odds with the norms, ideals or requirements of society. 

Stockton’s work turns toward the child who is faced with nowhere to grow, precisely because the idea of what counts as a proper or good childhood has been so thoroughly defined to exclude his or her body or mind. I just love how this essay offers an affirmation of the possibility of growing and developing otherwise
where kids who don’t, or can’t, grow up in accordance with the developmental demands of our society, might instead grow 'sideways.' Kids and adults alike might yet grow toward a 'question mark,' she says, or towards a future that holds and supports their difference. 

You can follow Anne @anneemcguire.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

Monday, October 1, 2018

Why silence is golden after doctors express empathy

By Louise Kinross

Every day, doctors in children’s hospitals meet with parents to talk about life and death medical decisions. It may be whether to surgically create a hole in a child’s windpipe to place a breathing tube, whether to remove a life-sustaining ventilator, or whether to proceed with a high-risk medical procedures, such as a third bone marrow transplant.

Studies show that when families feel their emotions are heard and understood by doctors, they’re more likely to share information that’s critical to the best care.

But what features of a conversation effectively transmit a message of empathy?

A fascinating study in JAMA Network Open looked at the transcripts of 68 recorded care conferences about high-stakes medical decisions at Children’s National hospital in Washington, D.C.

Researchers wanted to evaluate how doctors communicated that they had heard and understood parents', or other family members', emotions.

“The biggest surprise was the 18-fold increase in moving the conversation along and getting more information on a family’s fears, hopes and values just by using ‘the pause’ after expressing empathy,” says lead investigator Dr. Tessie October, who is a pediatric intensive-care doctor at Children’s National.

While doctors in the study recognized and responded to emotion in families 74 per cent of the time, in almost 40 per cent of cases they didn’t then pause—giving families a chance to respond. Instead, they reverted to medical jargon.

“I always thought the pause was powerful, but I didn’t expect it to have that magnitude of effect,” Dr. October says. “It supports the thought process I had going into the study, which was that families who have their emotions responded to are more likely to share additional and new information. Language really does matter.”

To categorize empathetic words in the transcripts, researchers used the NURSE pneumonic on how to communicate with seriously ill patients and their families: naming the emotion, showing understanding, being respectful, giving support and exploring feelings.

Most often doctors did respond to emotional cues from families, but too often they immediately plunged back into clinical talk, followed their kind words with ‘but,’ or were interrupted by another doctor who provided more medical data.

BLOOM interviewed Dr. October about the study.

BLOOM: Why was there a need for this study?

Tessie October:
I do both palliative- and critical-care medicine and I find that by straddling both, I have a unique understanding of the parent and family and their role in the care of their child. In the ICU, we don’t always respond to family’s emotions in the way families need to be supported. We know the families need medical information to make informed decisions, but we also know these are heavy, emotionally-laden decisions.

I find, anecdotally and in the literature, that we lean more heavily toward the medical information without the emotional support, and we need a better balance. In children’s hospitals, we do have other support folks like social workers or our palliative-care team or our chaplain, and physicians rely on them to provide the emotional support. But that’s not what our families want. Families want emotional support from their doctors.

BLOOM: How did you define empathy?

Tessie October:
We defined it, looking at the Webster's dictionary, as being aware of the feelings and emotions of the families, and responding to that emotion with care and love and compassion.

BLOOM: What were the key findings?

Tessie October:
The most important finding was that silence matters. Physicians in general are trying to be empathetic—they’re responding to the emotional cues of families—but they don’t realize that they’re sometimes burying that response in medical information, and when they bury an empathetic statement, families don’t hear it.

So giving an empathetic statement and pausing is what allows the family to hear. But more than that, after a pause, the family was more likely to talk about their worries, hopes and values, and these are the things we need to make some of these decisions. It wasn’t just that doctors responded and families felt better. It was that the pause moved the conversation along.

BLOOM: Your study notes that doctors sometimes linked a kind statement with ‘but,’ and this wasn’t helpful. Can you explain?

Tessie October: 'But' is a conjunction that indicates to the family that the next clause will contradict the previous one. So a doctor might say ‘Gosh, this must be really hard for you. I can’t imagine how hard this is—but—we do need to start making some decisions.’ Parents no longer hear the first part, and all they hear is: ‘You guys need to move this along.’

This happens pretty frequently. As much as doctors are trying to be compassionate, we have a purpose and an agenda in the meeting, and we want to get to it.

BLOOM: I assume that time pressures are a factor?

Tessie October:
We’re trying to change the way we think about the family meeting. In my research on communication techniques and training, we find that when you slow down and do less of the talking, you get more information, and the meeting is shorter. You spend less time, you get less conflict, and you respond to the family’s emotions. As a result, they’re able to collect themselves and are ready to hear more information. Think about when you’re in an emotionally distraught state. Until you come down on the emotion, you can’t take in any information. Until you respond to family emotions, they can’t hear medical information properly.

BLOOM: Why do doctors often bury compassionate statements in medical talk?

Tessie October:
It’s what’s most comfortable. It’s how we talk with each other, and how you’re evaluated in medicine. It’s the language that physicians know. It’s much harder to be in an emotional space and sit with a family in silence, or make statements that you know will hurt.

It’s harder to sit with a family that’s crying than to revert back to the stuff we’re comfortable with—talking about the kidney or lungs or other medical parts. It’s an avoidance behaviour that happens when you’re uncomfortable. We need to learn the skills that are necessary to respond to emotions, without feeling guilty. Having those tools in our tool box can be helpful.

BLOOM: How do we prepare doctors to do this emotional work? You note in the study that when a parent is distressed, it’s often difficult for doctors to pause after conveying empathy. Don’t they need coaching on how to do this?

Tessie October:
This is the hard work we’re trying to do. We don’t get this anywhere in our critical-care training. In palliative-care training, we do spend a lot of time talking about emotions and how to connect with families. Our procedures in palliative care include responding to family’s emotions and navigating care conversations and meeting as a team. But for a lot of ICU doctors—and other doctors beyond that—this is not part of their training.

We don’t think of how we talk with families as being a procedure, in the same way we think of putting in a central line or a breathing tube. I’m trying to change the framework of how we think about these conversations. If you think about how we even evaluate people who are appropriate for medical school, it’s not about how they communicate with people. We’ve decided that technical skills and the science background is enough to be a good doctor.

What we’re finding is that doctors who have better relationships with families are doctors who are less likely to be sued, who find more meaning in their work, and who are less likely to burn out.

BLOOM: Don’t doctors also need to regularly express their own emotions to the work they do? We did a narrative group with our inpatient nurses here, and one of the findings was that prior to the group, nurses felt they were alone in experiencing work emotions like grief, regret and guilt. During the intervention they would say things like “I thought I was the only one.” We found they benefited from hearing other nurses tell similar stories to their own, which normalized their feelings.

Tessie October:
We need to do more work that allows people to have a space to unpack these emotions that you describe in your narrative work. When we don’t do this emotional work with staff, we end up with burnout. There are some things hospitals are doing, like Schwartz Rounds. We also have debrief sessions with our chaplain after an emotionally challenging death of a child.

Part of it, truthfully, is that there’s a protective mechanism we invoke to be able to do the work we do. We try to stay a little bit distant. When a child dies, if you’re the ICU attending, you still have 40 other children who are expecting you to be on your game.

We need to normalize the fact that we have these emotions. Medical staff experience repeated work traumas. We need to make a safe environment for people to be able to emote, and talk about these things. It’s not institutionalized until every staff member has their own process that they can use to do this work. This is an area we need to address as a field.

BLOOM: What do you hope other intensive care units take from the study?

Tessie October:
That conversation matters. And that sometimes just slowing down and pausing can make a real difference in the family’s ability to hear and understand the information you’re giving. The motivation may be to rush through certain things, and we have to remind ourselves that these are emotional, life-changing decisions. Responding to emotions is equal in importance to providing technical, medical information.

BLOOM: To some degree, isn’t empathy subjective? Isn’t it possible that one parent would find a statement helpful, and another parent might find it hollow? Was there thought given to studying which words and phrases parents find most compassionate?

Tessie October:
That would be a very interesting study to do. We didn’t study that in particular. I think you’re right—some families respond to different words. Our goal is to increase the options that are in the doctors’ tool box, so if they try something and it doesn’t work, they can try something else. What I do in my meetings is I let the family talk. I let them start the meeting and get off their chest what they’re really worried about and, and based on the language they use, they give me a lot of clues.

It’s being present, and being aware, and listening to those clues. One thing we want to do is help doctors recognize statements as emotional. For example, if a family says “There’s got to be something more you can do,” I’m trying to help staff hear that as an emotional statement, instead of as a cognitive statement.

Often, the family is not asking ‘What’s the next phase 1 therapy available for my child?’ They’re saying ‘I can’t believe we’re at this place. I can’t imagine that we don’t have any other treatment for my child.’

BLOOM: Yes, it sounds like the parent is feeling powerless to protect their child. Was any thought given to connecting parents who are going through similar situations? In one of the statements listed in your study, a doctor says ‘I completely understand.’ But how is that possible, unless they’ve had a child in the same situation? I’m wondering if other parents—or a parent in a staff role—could provide additional support?

Tessie October:
I don’t know that that’s been tested. I know some hospitals are testing parent navigators, where a parent is on staff to provide continuity for families. Part of the problem is that parents often participate in meetings with different providers who give them different messages. A lot of times these meetings happen impromptu. We do offer to have families speak to other families going through similar things, especially around heavy decisions such as tracheotomy placement. We’ve also created resources in terms of videos that are parents talking to parents.

Friday, September 21, 2018

'I want a job where I play with toys and make kids feel awesome'

Photo and interview by Louise Kinross

Lisa Kakonge is a speech-language pathologist with Holland Bloorview's brain injury program. She did her training in Albany, New York, but always planned on coming back to Toronto, and had her eye on working here since high school.

BLOOM: How did you get into the field?

Lisa Kakonge: I knew about speech pathology from the time I was four years old. I have a brother one year older, and he had a severe phonological disorder. All of his sounds were funky. I used to be his interpreter when we went to the playground. When he was five, he started speech therapy and I would go to his weekly sessions with my parents. Back then, I thought it was so cool that he would play with a Mr. Potato Head, and come away sounding better. And when he sounded better, I could see he would feel better. I thought 'I want a job where I play with toys and make kids feel awesome about themselves.'

BLOOM: Which kids do you work with?

Lisa Kakonge:
They can be babies up to 18 years old. Most of them have acquired brain injury through stroke, meningitis or a trauma, like a fall from a bike or a car accident. Some of our kids have seizure disorders.

BLOOM: You said you're in your 14th year at Holland Bloorview. Was this your first job after school?

Lisa Kakonge:
I went to school in Albany, New York. After graduating, I worked for six months for the Boston school system. But I'd always had my eye on Holland Bloorview. I used to take the Sheppard bus to go to Ikea, and I'd see signs for the hospital. Before graduate school, I had worked with a private company as a speech therapy assistant, and they specialized in traumatic brain injury. I wanted to do something related to kids and rehab. Three full-time jobs came up here at the same time, and I applied for all three and was offered my choice. I chose outpatient brain injury.

BLOOM: What kind of therapy do you use?

Lisa Kakonge:
It varies greatly. Our inpatient cases start with a five-day assessment looking at general areas of strength and need with speech production, language and the interplay between thinking and language performance. We find goal areas such as word finding, or working on motor speech challenges.

BLOOM: Is that for kids who have trouble with the physical mechanics of speaking?

Lisa Kakonge:
Yes. We also work on language processing, how they understand and integrate information and being able to express things in a coherent way. A few years ago we moved to a seamless care model so I work with inpatients, day-patients and outpatients.

BLOOM: What is a typical day like?

Lisa Kakonge:
I usually have four to five children a day, and based on their age and tolerance, the sessions are between 30 and 60 minutes.

BLOOM: So today I saw you playing with the Fisher Price school bus and plane.

Lisa Kakonge:
I choose toys based on client and parent feedback about what they find interesting. Today we were working on the concepts of in and out, up and down, and on top and behind.

BLOOM: Do you usually get down on the ground with kids?

Lisa Kakonge:
Yes, getting down to their level allows me to see what they're interested in, and what I can comment on. It's always easier to do these things through play. Today, when we were putting the blocks away, the client said 'away,' which I'd never heard before. That wouldn't have happened if if I had controlled things.

BLOOM: What are the joys of the job?

Lisa Kakonge:
Seeing change. Setting goals that are collaborative with the parent and client and actually seeing change over time. We have graduated goals, and I review them every three to four weeks. Being able to show parents 'This is where they started and this is where they are.' And having a conversation about where we go next. It's really impactful to see that change over time.

BLOOM: It seems like acquired brain injury would generate some different emotions in parents compared with the experience of having a child born with a disability. What are the challenges?

Lisa Kakonge:
You touched on it. With a brain injury, it's something that is often very new. It's not just the changes in language skills, or changes in the interplay of attention, memory and planning on language, that families deal with—it's the whole picture of grief over what has brought them here. It's that idea of having to grow into the brain injury, and not knowing what the future looks like. These were typically developing children and something happened for them to be here, and that's a lot to cope with, for parents, and even for clinicians.

BLOOM: How do you cope with that?

Lisa Kakonge:
I talk a lot with my team. We meet once every week or two, and it's an opportunity for someone to say 'How are you dealing with that particularly big emotional case?'

BLOOM: Why does it help to talk about it?

Lisa Kakonge:
It helps because it normalizes your feelings. It doesn't take the feelings away, but it helps you unpack the feelings, so you don't bring that into therapy sessions. I never want my response to how I'm coping to impact the care I'm giving. Most colleagues have had similar situations, and it's an opportunity to be heard.

BLOOM: What are the main emotions you experience?

Lisa Kakonge:
Honestly? Grief. And shock. Some cases are terribly shocking and confusing.

BLOOM: Do you have any other strategies for managing stress?

Lisa Kakonge:
I'm a good walker. I put my my head phones on and pump really loud music. I used to walk down in the ravine behind the hospital—until I saw a coyote one day. Now I just walk through the neighbourhood—or to Whole Foods. I have two girls who are very busy and rambunctious and we spend a lot of time together at the park and biking. Even after a hard day, it's always such a comfort to know I'm going home. I'm biased, but I have awesome kids, and they are very empathetic. They'll say 'Today looks like it was a hard day.' Then they'll run to make me tea. I'm signed up for the mindfulness self-compassion course with Anna Marie Batelaan and I think that will be really helpful too.

BLOOM: What have you learned from families?

Lisa Kakonge:
They have this ability to walk with so much grace in the face of adversity—so much courage. I've learned a lot of patience. When I think about it, the parents who come in often have many children to care for, not just the child here. How they navigate that—caring for the self, for the family system, and are still present for the child here—I don't know how they do it.

BLOOM: If you could go back and give yourself advice on your first day here, what would it be?

Lisa Kakonge:
I think I would say 'It's okay not to know. You're going to work from the point of view of what clients and families feel they want and need.' When I first started, I felt really overwhelmed. I felt I've graduated, and I should know everything. But there's a lot of strength in saying 'I'm not sure, but I'm going to find out.' I had a really supportive team, and thankfully there were more seasoned speech pathologists who had put in the time, and had really neat clinical insights. I was never shy to reach out to others, to ask questions and to brainstorm. I would also tell myself to practise work-life balance. I didn't have a lot of that in my early years. I was always conscious of the deliverables of my program. Everything would get done, but it would be because I was working really long hours. Work-life balance is key to ensure you don't experience burnout.

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

Lisa Kakonge:
More staffing resources would be wonderful.

Monday, September 17, 2018

Why parents get hooked on 'normal'

By Louise Kinross

On Friday I did a narrative workshop with developmental pediatrician and psychology fellows at Holland Bloorview.

Something that emerged in the comics the fellows drew was how parents express their hope that their child will be “normal”—even years after receiving a disability diagnosis. 

It got me thinking about how the word normal is really a code word for 
“value.” In our culture, normal is valued, and disability is not. 

When my own son was a baby and toddler (but not toddling yet), I would always wait until our visit with the pediatrician was ending, before blurting out: “Will he lead a normal life?”

My son has a rare genetic condition, and the doctor had told me that 
he couldn’t answer that question. There were only 60 reported cases of his syndrome, and the children were affected in different ways. 

Yet I continued to ask the 
normal question—always at the end of the visit—knowing the doctor probably thought I was dippy, or hugely forgetful. Why?

It was years later, working at Holland Bloorview, when it hit me.

As a young mom with a child with disabilities, I didn’t want my son to be judged by others. 
When I was out and about, I felt I needed to put on a brave face to influence how other people saw him. It was only in the privacy of the pediatrician’s office that I let my guard down and shared my concern for my son’s future. That is the tremendous power that health-care workers hold.

Parents and patients honour doctors, and other therapists, by sharing their greatest fears and feelings of inadequacy.

So why did I repeatedly ask if my son would lead a normal life?

Because what I wanted to hear was that my son had value. I wanted to hear that I had a great son, and whether he led a normal life or not, that wouldn’t change. I wanted the doctor to affirm what I saw in my son. I wanted to hear it from an expert.
 But I didn’t know how to ask for that. 

A couple of years ago there was a story in The New York Times about these so-called doorknob moments. They occur at the end of a clinical visit, just as the doctor is putting his or her hand on the doorknob to leave. The parent, or patient, waits until the last second before they have the nerve to blurt out what is truly troubling them.

“Often, the most important service we provide a patient is not what we think it is,” wrote Dr. Adam Cifu in an opinion piece last month in The
 Journal of the American Medical Association. Dr. Cifu, who works in the department of medicine at the University of Chicago, suggests that the emotional support and space clinicians offer patients is as important as “clinical acumen or medical knowledge.” 

His piece
 reminds me of a finding of our Holland Bloorview study looking at whether a narrative group promoted empathy in inpatient nurses. 

Prior to the six-week group, participants described a tension in balancing “direct nursing”—their medical tasks, procedures and documentation—with providing emotional support. Given time pressures and the expectation to maintain professional detachment, the nurses prioritized medical tasks over emotional support, describing the latter as “outside my nursing hat.”

After reading, writing and drawing patient and clinical stories, the nurses elevated compassion, listening, being flexible and providing a safe space to families, as being on par with direct nursing tasks. For example, “Yes, we do the technical stuff but we feel like we’re so much more the emotion, the support, as well,” one said.
 And: “Really taking that time to sit down, as we were experiencing in the six-week [intervention], right? Give them a safe space.” 

Part of listening to parents is trying to hear the meaning or emotion 
behind their words (which is not always self-evident). 

Every parent wants to know their child has value and is valued by others.

Oftentimes, in the early days of a child’s diagnosis, parents pin their child’s worth on hopes for future change—that the child will walk when they’ve been told this is unlikely, or defy expectations in some other area.

The problem with hope is that it’s never now
—and it always hinges on the child better squeezing into what the culture deems normal.

What about the child we have right in front of us? The way we think about human value is a choice. Why not choose to see value in this child, right now, just as he or she is? Can't value be inherent in a child, simply because they're human? 

When a parent starts talking about their hopes for their child's future, don't forget to also ask about their child's value—now. If the child isn't able to communicate easily, ask parents what makes this child tick. 
What do they love? What do they hate? What kind of personality do they have? What does the parent most enjoy doing with their child? When are they most happy together? What does the parent most love about their child?

Don't forget to talk about the cool qualities in the little patient you see in front of you. Because every child has them. Don't forget to tell parents they have a great kid.

When parents get hooked on their child being 'normal,' what about sharing this idea that they can choose to see their child's value as inherent, as unchangeable, as their birthright? Your child has value—right now—is a powerful message.