Monday, May 4, 2015

Why are disabled students singled out for 'chores?'

By Louise Kinross

A few year's back it was suggested to me that a great co-op placement for my son was to work in a school separating the garbage and recycling. My son had no great interest in garbage, or recycling, so I didn't buy the rationale and nuked that idea.

Many high schools have students with disabilities do the recycling as a regular activity. I'm not sure why these students, over any other student, need to learn this skill at school, or why we want to give their peers the idea that students with disabilities have a special passion or proclivity for it? It seems to me that if students are being called upon to do the garbage and recycling then all students should take part.

This morning Ellen Seidman at Love That Max reports on another example of disabled students being singled out for chores that no other students do.

At Big Blueberry Eyes, Michelle learns that part of the curriculum in a self-contained Grade 6 class for her daughter will involve washing the uniforms for the school football team.

"The thing is this: I am not sending my child to middle school to learn to do laundry," writes Michelle. "Especially not the laundry of the football team. It doesn't matter if it happens once a week, once a month, once a quarter, or once a year. One time is one time too many. Even one time is not acceptable."

In addition to the fact that using a washing machine isn't typically on the middle school curriculum, if you want to teach kids the mechanics of washing clothes, shouldn't they have to do their own stinky ones? Why should the sweat-drenched football jerseys be carted over to the special-needs class?

Unfortunately, this scenario reminds me of a parent who went with her young adult daughter with Down syndrome to find out about job opportunities through the Ontario Disability Support Program. They were told that every single job included cleaning a bathroom. Now, bathrooms need to be cleaned, and I don't have a problem with students being given this responsibility. But when we specifically single out students with disabilities, and tell them that for some reason this particular task is attached to the only jobs they are eligible for, something is seriously wrong.

Thursday, April 30, 2015

Feeling judged as a parent? Read this

By Jessica Geboers

Canadian parenting expert Ann Douglas spoke with BLOOM about her new book Parenting Through the Storm—a collection of strategies for raising children with mental health, behaviour or learning challenges, and maintaining your own health and happiness in the process. It’s Ann's most personal book to date (see above with her husband and four children). Each of Ann’s children has struggled with something, including bipolar disorder, depression, anorexia, Asperger syndrome and ADHD.

BLOOM: What made you want to write this book, particularly at this point in your career?

Ann Douglas: I remember thinking at the time, when my kids were going through such a difficult time, how it seemed like a lot of mainstream parenting books just didn’t really speak to me. I used to get infuriated by magazine articles that would say something like: ‘Better behaviour from your child in 30 days.’ That kind of article would make me crazy because it felt, to me, like the ‘Thinner in 30 days thing;’ it was unrealistic and didn’t apply to everyone. It reminded me of the kind of advice that sometimes you'd get from a well-meaning friend or relative who’d say ‘Well, tell them how to behave.’ It's like ‘Well, honestly, you think we haven't tried that? They're having a really hard time. I think you're not understanding the extent [to which] we're struggling, and the fact that we've tried everything we can think of.’

I wanted to write a book that would help parents to feel a little less alone and a lot less judged. So that was sort of my goal. In terms of why I decided to write it now: back when we were struggling, I was going through such a hard time I could hardly write a grocery list. I was not in a position to be able to look at things analytically and to be able to go into the problem-solving mode, because I was feeling stressed and overwhelmed by the situation. I think I needed to have a bit of time so that I could see that my kids could come through the other side, they could make it through the storm, and that we could thrive as a family. Only then did I feel like I could sort of start to think through what was effective, what worked for us, and then do the research to find out what worked for other families, and what strategies research was identifying as helpful.

BLOOM: One of the key themes is that in order to support your child who is struggling, parents need to take care of themselves. Is this a new idea?

Ann Douglas: No, I don't think it is. But I think that it’s a message that parents can’t hear often enough. Because you’ll say, ‘yeah, yeah, yeah, I know I really should be getting sleep or exercising or whatever, and I will once my child is doing this better, or my child gets past this milestone.’ Then you keep postponing that time of self-care and you can't do that indefinitely or you become totally depleted and burned out. I say this from personal experience. One of the reasons I'm so passionate about this stuff now is because I really did sort of hit the wall: I wasn't sleeping well. I wasn't eating well. I gained about 100 pounds and I had to really work hard to lose that weight.

BLOOM: For parents who feel overwhelmed with the demands of their child, how can they start to care for their own mental and physical health?

Ann Douglas: Sometimes it’s just little wee tiny things, like if somebody offers to help in some way letting that person help as opposed to going ‘no, no, no, we're okay. Don't worry about it.’ People want to help, so accept those offers because they can only help to make your life easier. As long as it’s not a high-maintenance person that's going to come in and start making your life miserable. We’re talking about lovely friends and family who do everything from fold laundry, run errands for you, or stay at your house with your child while you go for a walk around the block if that's all you feel you can manage at first. Because it really is very, very stressful and, I think, it's the emotional toll: the fact that your brain is still working away at solving the problems and worrying about your child 24/7. [For example], if you wake up in the middle of the night it can be hard to get back to sleep because you're feeling so worried and overwhelmed.

Looking for little ways to inject some self-nurturing or some fun into your day [is also important]. Even if it's just, when you get a momentary lull, to flip through the pages of your favourite magazine, or having a cup of your favourite tea, and connecting with people who support you. Whether it’s firing off a quick text message to your best friend saying this wonderful thing happened today, or this incredibly frustrating thing happened today. Just having an outside connection that can say, ‘you know what, you're doing a great job and you just keep doing that.’

BLOOM: Why is it so hard for parents to take care of themselves?

Ann Douglas: I think a large piece of it is that you know your child so well, and you’re into such a groove or routine with your child, that you worry: if I have a child who has autism, for example, [who] doesn't respond well to changes in routines, if I go down the street to have coffee or lunch with my friend and somebody else is here they're going to do things a different way and my child is going to find that challenging. And yes, this is true, but if you look at the cost-benefit analysis, maybe having a parent who feels refreshed and can take on the day is worth a little bit of upset. Plus you want to encourage your child, over time, to work on flexibility, so that can be one way to do it.

I think to realize that it is hard; it’s not as easy as just walking out the door. There’s so much more planning and worrying and thinking involved. But I know [that] so many parents, once they take that step, they say, ‘Why didn't I do this years ago?’ Because they really feel that it has made that much of a difference in their ability to cope and not to feel flattened and depleted all the time.

BLOOM: What do you think happens if parents don't make themselves or self-care a priority?

Ann Douglas: They get really burnt out and really depleted and their physical health can suffer. Their mental health can suffer. They can't be the kind of strong advocate for their child that they want to be. They could be really grumpy and unable to focus on big-picture parenting goals, but get caught up in the emotion of the moment because they [don’t] have any self-control resources left.

BLOOM: In the writing of this book you interviewed other parents and experts at length. How did you decide what to include?

Ann Douglas: Well first of all, whenever I write a book I tend to get a lot of input from parents. So I put out a call through all my usual channels asking if people would be willing to be interviewed over a period of months about their family's experiences. I had about 50 families step forward. I interviewed them via a series of eight questionnaires that were sent out over about two to three months. It was probably about eight hours’ worth of work per family answering my questionnaires. I'm hugely grateful for the time and effort they put into that because what I walked them through [was] all the different stages: What was it like for you when you didn't know what your child was dealing with? What was it like going through diagnosis and treatment? What are your hopes and dreams for your child? What is your child's life like now? So that I could write a book that would cover those different chapters in the family's journey.

In terms of the researchers and the experts, I did a huge amount of research. I read about a thousand different journal articles, about 40 books, and an awful lot of online research to find top Canadian researchers who would have something helpful to say to families. Luckily, almost everyone I asked for an interview managed to fit it in, including very, very busy people who were flying across the country to speak at conferences. I'd get them booked eight weeks in advance for 15 minutes on a Friday morning. But I managed to get a lot of really good information and to get them to sort of boil down in practical ways what this could mean to make life better for parents who have a child who’s struggling.

BLOOM: Were you surprised about how many families were willing to share their stories?

Ann Douglas: I was surprised at the depth and how much they trusted me. They told me very intimate and personal and painful times in their lives and they trusted me to portray their stories in a way that honoured themselves and their children and their struggles as opposed to judged. They made themselves vulnerable and that takes a lot of courage.

BLOOM: What do you hope parents take away from the book?

Ann Douglas: I hope that parents emerge with the feeling that they’re not alone and that they're doing the best they can in a really difficult situation. I think it's so important to remind parents to treat themselves with the same kindness they would extend to a friend who’s struggling. So in other words, we're talking about self-compassion. Because self-compassion is life changing and if I can just spark that idea in people's minds, of being a little kinder to themselves, they'll find it so much easier to deal with the day-to-day challenges of what they're facing in their families.

BLOOM: And professionals, what do you hope that they take away?

Ann Douglas: I hope professionals who read the book get a sense of how hard it is for parents and the fact that parents really are doing the best that they can. That way, professionals may be less inclined to judge or assume they know better and recognize that the parent is the true expert when it comes to their child and their family situation. If parents and professionals can work collaboratively, sharing the same goal of helping the child, amazing change can happen.

BLOOM: There are many families mentioned in the book, including your own, who have several children with mental health, behavioural and neurodevelopmental challenges. Is this common?

Ann Douglas: It is. Often a lot of things have some kind of genetic basis and we know that there’s usually a mix between genetics and the environment. So it’s not exclusively genetic, but you know there’s going to be a whole bunch of genes popping up in different family members, so it’s not unusual at all for there to be people that share the same diagnosis or have related diagnoses. Maybe one person has problems with anxiety, and somebody else with depression, and somebody else with ADHD, and so on.

BLOOM: Which can make it even more challenging?

Ann Douglas: It can, especially if the parents also share the diagnosis. Maybe [you] have ADHD and are trying to parent kids with ADHD and at first it can feel like ‘oh wow, this isn't going to work very well’ but then realize that you've gained a lot of wisdom and insight living your life and figuring out how to manage your particular challenge so you can share some of those insights with your child. You can also be more understanding because you know that these challenges are for real, they're not something made up and it’s not just a child trying to be difficult or act up for the sake of acting up. There’s a reason for the behaviour.

BLOOM: Was there anything that you learned while working on the book that was particularly new, interesting or surprising given your experience?

Ann Douglas: The information about self-regulation was something I hadn't done a lot of reading about until I started doing the research for the book. The idea that we can both boost our positive emotion and reduce our negative emotion just by making choices in our daily life; that was mind blowing for me. Just learning how taking a couple of walks a day can help me to manage my anxiety. Also, the piece about self-compassion: that it’s so important to change from the self-critical channel in your head where you hear mean things being said to yourself about yourself, to a much more self-compassionate kind of stance where you remind yourself that you're doing the best you can in a difficult situation. Then trying to think what you can do to make life better.

BLOOM: How did you decide what language to use to describe conditions?

Ann Douglas: I want to be as inclusive as possible so that everybody can sort of see himself or herself in the book. I also believe when we say someone has a mental health disorder it sounds, to me, so negative and so judgmental. I picked up on the language about calling things ‘a challenge’ from attending a mental health conference last year that was hosted by the Institute of Families for Child and Youth Mental Health. They asked the young people themselves ‘What language do you prefer when people are talking about your mental health problems/difficulties/challenge?’ And they said they would very much prefer the idea of using the word ‘challenge’ because that left the door open to possibility and hope, because if it's a challenge you can just keep working at it. Whereas if it’s a disorder, it sounds a lot more definitive and that there's not quite as much room to grow.

BLOOM: You repeat full names and diagnosis quite often. Is the book meant to be read from start to finish? Or can you kind of skip around?

Ann Douglas: You can dive in to whatever you need most today. If your child is having a hard time at school you might dive into the advocacy section and if you’re preparing for that first meeting to get a diagnosis, you might start there in the book. If you just want to know what it’s like for other families, you might read the stuff on how it is for other people and their families. That’s why it has a really good table of contents and comprehensive index—so that whatever your issue is today when you kind of feel like you're hitting the wall, then flip open the book and look for the appropriate section. You might be inspired to read other sections around it, but at least if you have a burning question or issue today, then you know where to go.

BLOOM: What kind of feedback have you had? What are you hearing from parents and professional groups?

Ann Douglas: They’re really grateful that there is a book like this now so that they don't feel quite so alone. They are just in awe of the braveness of the families who decided to share their stories in an effort to try and help other parents. I share that feeling of appreciation because if other families hadn’t been willing to share their stories there wouldn’t have been a book.

BLOOM: Was it challenging to write candidly about your own experiences?

Ann Douglas: I had to think hard about what I was prepared to share and what I wasn’t prepared to share, and I also needed to check things out with the kids because it’s not just my life, it’s their life too. So I made a lot of really conscious and deliberate choices about what I was going to write about. A couple of years ago, I sent out a tweet on Bell Let's Talk day saying that I lived with bipolar disorder and I thought it’s really important for people to know people out there who are dealing with a particular challenge or disability or whatever. Because if we don't have some sort of role models out there then nobody will ever understand that it’s possible to have a diagnosis and an amazing life. I think that I feel a real responsibility as somebody who, yes has bipolar disorder, but also, yes, has a pretty great life; that I should say I’m not going to be afraid to tell people I live with this.

BLOOM: Was it difficult to choose what you were going to include?

Ann Douglas: I think I just wanted to be as honest as I could and talk about different experiences that my kids had had and that we’d had because, again, not wanting other parents to feel like they were doing it wrong if their child was having a hard time at school or if they were having a hard time navigating the children’s services or mental health care systems. The systems are complicated and schools don’t always have the resources they need to be able to respond to the needs of children. I think that if we all talk about these challenges then that’s the first step to getting these various systems funded enough that every child gets their needs met sooner rather than later.

Which hope is false? Which is real?

Yesterday I read a fascinating feature in WIRED called An Alternative-Medicine Believer’s Journey Back to Science.

It chronicles the story of Jim and Louise Laidler—two American doctors whose two sons were diagnosed with autism. For a number of years they threw themselves into pursuing alternative therapies for their boys: supplements, a gluten- and casein-free diet and IV infusions of secretin. Jim became an expert and speaker on chelation, a controversial process meant to rid the body of heavy metals caused by vaccines and pollutants.

The Laidlers eventually acknowledged that the therapies hadn’t made any difference and stopped them. The WIRED piece talks about how unscientific treatments with wild claims create false hope in parents that becomes addictive. “Instead of thinking about what to do when there are no options for a cure, it’s easier…to never run out of options.”

While one of their sons improved without alternative treatments, the other had more significant disabilities which meant he probably wouldn’t live independently. The Laidlers had to face some hard truths about how to ensure his wellbeing after they died. Had they held on to hopes for an alternative cure, “...there would have been no time, no money, and no willingness to think long-term.”

Over many years the Laidlers planned to buy a farm and to join with other families of youth with autism to create a shared home. “For the Laidlers, the real alternative was to stop believing in miracles—and start planning for the future,” writes the author of the WIRED piece. Jim Laidler describes this planning as “a better kind of happiness” because it was real.

This piece resonates with me because our son is about to leave the school system and we find ourselves without a well-thought out plan. There are always so many balls to juggle on a daily basis that it's easy for parents to put off planning, especially when there doesn't seem to be an obvious solution.

What have you learned about hope while raising your child? What have you learned about planning for the future?

Wednesday, April 29, 2015

Want to know how dads feel? Watch this film

By Louise Kinross
It's not often you hear fathers of children with disabilities talk candidly about their child's diagnosis and how they reacted emotionally to it. But in Do It Differently, Scott Phillips sought out four dads with kids with autism and created an environment, maybe because it was dad-to-dad (Scott also has a child with autism), where they felt comfortable. The result is an exquisite, hour-long documentary where dads bare their souls. "We said 'why us,' as well as 'what did we do?'" recounts one of them. This is a must-see for every dad, and for every mom who felt their partner didn't 'get it' the way she did. You can watch it for free on YouTube or buy a DVD at Fan Blade Films. "For all fathers who feel lost, scared, and helpless I hope the film...inspires you to want to do more for your child who is different than you expected," says director Scott Phillips. "You are not alone."

Is riding a wheelchair scary or exhilarating?

By Louise Kinross
When you hear the word ‘wheelchair,’ what comes to mind?

Is it scary and confining, or liberating, fun and even glamorous?

Yesterday I read disability activist Emily Ladau’s piece in
The Huffington Post about a public service campaign called Beware The Chair. To raise awareness of how osteoporosis weakens bones, making them susceptible to breaks, an empty, remote-controlled wheelchair chases people down in a mall and on the street, scaring them. The message? “If you don’t pay attention to osteoporosis, you’re going to wind up in one of them,” says one of the random people interviewed.

The campaign was initially claimed as a partnership between the National Osteoporosis Foundation, the National Bone Health Alliance and others. The two national groups have since distanced themselves from it.

But the Beware The Chair video, with its ominous music, black screens and admonition to “stand up to osteoporosis” feeds into common perceptions of the wheelchair as a tragedy.

Sue Austin, the British performance artist pictured above, told BLOOM she was surprised by people’s negative reactions when she began using a power chair several years ago because of a chronic illness. She was studying fine arts and began a project to incorporate her wheelchair into her art. As part of her research, she asked people what they thought of when they heard the word wheelchair.

Like the images portrayed in the Beware The Chair campaign, what came to mind was “fear, restriction, limitation and pity,” Sue says.

This contrasted starkly with Sue’s experience. “I’d become housebound and my first experience trying a power chair was ‘this is my freedom.’ It means I can get back out into life and into the world and it’s so exciting to be able to zoom along and feel the wind on my face.”

Sue began making art that incorporated her wheelchair, playing with it and painting it. She then learned to scuba dive and worked with Britain's National Health Service to turn a wheelchair into one that could be operated underwater. Her project “Creating the Spectacle” was part of the Cultural Olympiad in London in 2012.

“The ideas attached to scuba equipment are ones of excitement, adventure and expansion,” she says. She wanted to pair these with the wheelchair, taking it places it'd never been before and upending people’s mindsets.

At the Cultural Olympia events in London, people watched Sue move effortlessly underwater like a mermaid—except she did it in a wheelchair.

Motors under her chair propel her forward while Sue steers two acrylic hydroplane “fins” that curve out from the footplate with her feet: up, down, side to side and loop the loop, like a pilot doing graceful air manoeuvres. She appears weightless, unlimited, even glamorous, with her long dark hair waving behind the chair.

“I wanted to open up a new space where people feel the clash of their preconceptions meeting this new image, and it allows people to view a wheelchair in a completely different way,” Sue says.

This is a message numerous disability bloggers have conveyed recently. In
Why using a wheelchair is the opposite of giving up at The Mighty, a young woman with cerebral palsy writes: “Please don’t be afraid of something that’s given me a chance to move along in the world, something so infused with the essence of my being.” And “When I ride in it, I’m not confined. When I ride in it, I’m free. Free and rolling forward.”

This concept of the chair as a part of one's essence fits with a description in a new textbook co-edited by Holland Bloorview scientist Barbara Gibson called
Rethinking Rehabilitation. A chapter in the book likens learning how to use a wheelchair to making it a part of your body. “As a person is learning to do wheelies, she is also learning to use her body via the chair, thus transforming her body to include possibilities and limitations afforded by the chair…In this re-embodiment process, her body is the chair, the chair is her body; she doesn’t ‘have’ a chair—rather she is enwheeled.”

But too often people view the wheelchair not as a natural extension of a person's body, but as an unwelcome contraption that weighs them down.

Parent blogger Mary Evelyn writes about taking her toddler son with spina bifida out in his wheelchair and being stared at as if she’d dressed him in a clown costume with a big red nose. In
Want to know what it’s like to go out in public when your child’s in a wheelchair? she writes “ are not invisible. You do not blend in. And you’re afraid that if you reveal even a hint of discontent, all those strangers behind all those watchful eyes will think one thing–“Well, of course she’s stressed. Not surprising, really. It can’t be easy… after all, look at that baby of hers.”

How do you change the storyline about wheelchairs?

Read an earlier interview we did with performance artist Sue Austin.

Tuesday, April 28, 2015

Expecting death, Gabe prepares for life

By Megan Jones

Luke Terrell tells his friend Gabe Weil’s story like this:

By the time he reached his mid-20s, Gabe (above second from right) thought he only had a few more years to live. Diagnosed with Duchenne muscular dystrophy in his childhood, the St. Louis resident had always been told that he could expect to live until the age of 25—if he was lucky. By 10, he needed a wheelchair for mobility. And when he hit his teens, his physical state had deteriorated so drastically he needed help from a full-time caregiver.

Gabe set large, short-term goals. In December of 2013, he graduated with a degree in psychology from Washington University (where he had met Luke two years before). The accomplishment was bittersweet: getting a degree had been a life goal for Gabe. But at 25, he and his family knew the clock was ticking.

Then, at a doctor’s appointment that same month, everything changed. Sitting in a small medical office, Gabe and his mother, Josephine, watched as the doctor examined Gabe’s feet. The doctor mumbled to himself. He paused. He mumbled again. Josephine asked him to repeat himself.

“I said I don’t think Gabe had Duchenne’s,” the doctor explained.

In the months that followed, many doctors performed countless tests to try to determine a new diagnosis. They never settled on one for certain, but something became clear: Gabe Weil was going to live far longer than expected. In fact, his life-expectancy had doubled, doctors said. Suddenly, he needed to plan for a life he never imagined he’d have.

Today, Gabe, 27, is the main character in
a documentary that Luke, 23 (above photo, second from left), is directing about his friend. The film, named after its subject, captures Gabe’s transition as he reimagines his life from scratch, and tries to set the long-term goals he never thought he’d need. 


Luke met Gabe when he began working as his tutor at Washington University in 2011. At the time, both men were completing degrees in psychology. Luke had worked with adults with muscular dystrophy in high school, and teamed up with Gabe on a volunteer basis.

“Initially, I went into the relationship thinking that we wouldn't necessarily have a lot of common ground,” he says.

But that soon changed. One day, after Luke had helped facilitate a test, he asked Gabe how he thought it had gone. “He said, ‘Dude, I don't want to talk about it. Let’s take a shot,’” Luke says.

That broke the ice. 

“I didn’t even think he drank,”  Luke says. “But all of a sudden he became real and relatable to me,” Luke says. “I realized he had interests, passions, hobbies and dreams just like me and all my friends did.” It was small, surprising moments like these that made Luke want to share Gabe’s story through film.

As their friendship grew, Luke noticed many only considered Gabe at a surface level. They saw him as the “disabled guy” who they couldn't relate to. With the documentary, the director hoped to break some of those stereotypes about young adults with disabilities.

“There’s this tendency to see people with obvious physical disabilities and immediately dehumanize them. I’ve seen people talk to Gabe in a baby voice,” Luke says.

But Luke knew him as someone multi-faceted: Gabe was a foodie who loved going to concerts and listening to new bands. “I wanted to show the impact Gabe had had on me. I wanted to show that he is a bright young man.”

So far, they’ve been working on the film for a year. Prior to beginning the documentary, Luke had directed and produced a number of shorts. But this is his first foray into feature film making.

It hasn’t been without its challenges. Gabe’s muscular dystrophy causes him to speak slower and less clearly than most. Occasionally he needs to take breaks to use a breathing machine. Obstacles like these have slowed the filming process at times.

But they’ve also added to the film. Luke explains that since Gabe has to rely on others to do most daily tasks for him, he’s used to having to be a great communicator. Gabe’s patience and his ability to speak so candidly about his wants and needs make him a compelling subject to film.

Making the movie has also been transformative for Gabe. Being filmed and interviewed forced him to reflect on his muscular dystrophy, and the way the condition has affected multiple facets of his life.

“I’ve seen him become much more vocal about his feelings towards others, about how appreciative he is of his life,” Luke says. “I think it’s helped him come to terms with his identity.”

Luke hopes that audiences will get as much out of watching the film as he and his friend have gotten out of making it, and that viewers will find inspiration in Gabe’s unique perspective on life, whether or not they’ve previously spent time around people with disabilities.

The director describes a night, during the filming process, where he and Gabe were out to dinner. Gabe’s right arm had fallen asleep, and Luke was holding it up for him to try to restore feeling. At one point, Luke jokingly brought it down to rest on his shoulder so that Gabe’s arm was around him. Gabe paused, then excitedly told Luke he’d never put his arm around someone before. “This is so cool,” he said. “Can we do this again from time to time? Is that weird?”

“That was such a Gabe moment,” Luke laughs. “He finds the extraordinary in these moments we take for granted. There’s a lot of strength and power in Gabe’s voice.”
GABE is slated for release in fall 2015. Check out the trailer.


Thursday, April 23, 2015

Schwartz Rounds uncover the heart of healthcare

By Louise Kinross

As a parent, how do you define compassionate care? Have you ever broken down when describing something troubling about your child and their care?

If so, what reaction from the clinician made you, as a parent, feel cared for?

Earlier this month Holland Bloorview was the first hospital in Canada to partner with Boston-based
Schwartz Center for Compassionate Healthcare.

The Schwartz Center is a non-profit organization that’s developed the
Schwartz Center Rounds to give hospital employees an opportunity to share the emotions they experience when working with patients and families in the most challenging situations. The goal is to bring the humanity back to healthcare. More than 350 health facilities in the U.S. and 80 in the U.K. are conducting Schwartz Center Rounds. Caregivers report that the program increases their empathy for patients and families and better prepares them to meet patients’ needs; improves teamwork; and decreases stress and isolation.

Non-identifying patient cases are presented and caregivers share their experiences confidentially.

At Holland Bloorview’s first Schwartz Center Rounds session, staff noted that their training hadn’t prepared them for some of the painful situations they face in supporting parents whose children have experienced life-changing trauma.

“How do you maintain your emotional composure?” asked one clinician. “Do you maintain your emotional composure? And why do I feel that I have to do that?”

Has a professional caregiver demonstrated compassion in a way that you found helpful? Please share your stories.