Finnish punk band rocks disability awareness at Eurovision

PKN is a punk band that's a little different. The four men are middle-aged, Finnish, and have Down syndrome and autism. Next Tuesday they're competing in Vienna in the Eurovision Song Contest.

The group was chosen to represent Finland by popular vote.

PKN has toured in the United States, United Kingdom, Germany, Norway, Canada and the Netherlands.

They were the focus of a documentary called Punk Syndrome in 2012. Their first hit, sung in Finnish, includes the lyrics: "I don't want to live in a group home, I don't want to live in an institution."

I think this is very cool. Did anyone see them on tour?

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To our nurses: You are the heart of rehab

By Louise Kinross

When your child is an inpatient at Holland Bloorview, the staff you will come to rely on most are the nurses on your unit.

When your child moans in pain after his body cast is removed, because his muscles are in spasm, it will be a nurse who sits with both of you, remaining remarkably calm as you hyperventilate, and problem-solving to figure out a solution.

Our nurses are highly skilled in caring for children with complicated disabilities and medical problems—and their parents and families, who are often traumatized. They are ingenious in coming up with ways to distract kids from painful procedures or in making something unpleasant, like having a dressing changed or blood drawn or taking a medication, bearable.

Our nurses provide the best medical and emotional care to our children and families.

Of any staff member, it is our nurses who will be with your family the most during your inpatient stay.

Our nurses are our children’s greatest champions as they progress through the rehab process, and their constant allies when times are tough.

When my son was hospitalized here, we came to depend upon their handmade heating packs for pain: wrap three damp facecloths in a blue pad, secure with orange hospital tape and heat for a minute in the microwave. They were soft, moulded to the body and carried a bit of nursing magic.

When everyone goes home for the weekend and the hospital becomes a ghost town, and you feel incredibly lonely and alone, it will be the warmth and encouragement and presence of the nurses that lift your spirits.

Our nurses instill confidence in parents' ability to learn how to care practically for their child after surgery or trauma. They make what feels impossible possible.

Please join me in saluting all of our nurses at Holland Bloorview during National Nursing Week.

And please share a story about how a nurse made a difference in your life.

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Dear doctor, therapist, nurse and teacher

By Louise Kinross

I was delighted and honoured to interview Julie Keon, author of What I Would Tell You, on Saturday at Holland Bloorview.

Julie’s book is about raising her daughter Meredith, now 11, who was born with severe brain damage. What’s unique about this memoir is that it’s structured around deep practical truths Julie has learned that will improve understanding between parents of kids with disabilities and the health professionals who work with them. 

A must-read chapter in the book is directed to clinicians—doctors, and also therapists, nurses, social workers and teachers. It includes 10 suggestions. I am including the first four below (the following belongs to Julie Keon and is copyright 2015). Please read these and share with the clinicians you work with.

1. I do not think you are God. There is far too much pressure placed on doctors. They cannot, and should not, have all the answers. Nor can they prevent catastrophic outcomes. As much as you deserve tremendous respect (as all of us do), you might be relieved to know that I do not hold you up on a pedestal or expect you to perform miracles. You are human, and I do not expect you to predict the future or a life expectancy. Nor do I expect you to know exactly what is going on with my complex child. I appreciate it when, with all of your years of experience and knowledge, you can look at me and tell me that you do not know the answer. I do not need either shaky hope or dark predictions. What I do need is the truth as you know it, regardless of whether or not you believe I am able to handle it.

2. Be aware of how long I have been on this path. If we are meeting for the first time because my baby was born just days or weeks earlier, please keep in mind that I am exceptionally fragile right now. I am not only learning that my child will have lifelong issues, but I am also in the middle of the postpartum period. Please be mindful of my tender emotional and physical state. If we are meeting years into this journey, do not assume that I have become accustomed to the fact that there is a DNR (do not resuscitate) form in the desk drawer in our living room, in the glove compartment of our van and in our daughter’s lengthy hospital chart. Please know that updating this form never gets easier. Speaking nonchalantly about our child’s life expectancy is insensitive, whether you intend it to be or not. It will always be a delicate topic for us. Knowing that we will likely outlive our daughter will never, ever be acceptable to us.

3. Meet me where I am. Please do not expect me to be where you are mentally or emotionally, for I am not there yet. I have not lived the sorrows and losses you have witnessed. I have not experienced even a fragment of what you anticipate for our future. I have only lived this life for a decade, and anything beyond this moment has yet to be lived. Use caution when sharing with us the medical outcomes of other families “like ours.”

4. Unless absolutely necessary, please refrain from asking me about my pregnancy and birth. Especially in the early days, months and years, having to explain how and where our daughter was born each time we enter an emergency room, hospital or medical clinic becomes redundant and is unnecessary, especially when our visit is to rule out an ear infection. It is emotionally invasive to make us relieve this intimate and personal experience with virtual strangers, simply in order to fulfill clinical checklists. Interestingly, by the time we have integrated this experience into that part of our brains that deals with difficult experiences, you will no longer have a need to ask.

Do these suggestions resonate with you as parents? Please add your own in the comments. Julie's book is available to be borrowed through Holland Bloorview's library.

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Wesley goes for a spin

Wesley has been an inpatient at Holland Bloorview twice, following treatment for a rare form of cancer. Read about why seeing Wesley ride off on this specially-fitted tricycle meant so much to his mom Laura Ritchie.

And in case you missed it, check out The Toronto Star's special section on families at SickKids which came out this week.

Author Julie Keon is launching her new book What I Would Tell You: One Mother's Adventure with Medical Fragility this Saturday May 9 at Holland Bloorview at 1 p.m. There's a lovely video about Julie and why she wrote her book in this Ottawa Citizen video. Hope to see you there!

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Grief? A friend? Don't miss this interview

I am delighted to be interviewing Julie Keon (right) about her book What I Would Tell You this Saturday May 9 at Holland Bloorview. You can still RSVP to the event here.

Julie’s book is about raising her daughter Meredith (above with dad Tim), who was born with severe brain damage. I’ve read many memoirs about parenting a child with disabilities, but this is the first one that’s packed with deep, practical truths. When you read What I Would Tell You, get ready to feel like Julie can see into your heart and understands when your courage for what some people call “extreme parenting” has run dry. 

As I flipped through the book, so many chapter titles resonated with me. Then I hit “Befriending Grief.” What? I’ve always resisted grief, pushed it down. The  thought of making it a friend that I welcome in for a cup of tea, as Julie suggests, was hard to imagine. Then I read the chapter and when I next felt grief I did what Julie said. And I realized that it did, indeed, change the dynamic, turning it into an act of great self-compassion. 

This is an excerpt from that chapter. Read the words carefully, and then when you feel the pain of grief, stay with it, as a friend would, follow these steps, and tell us what happens!

“Grief can be our silent companion, something to be tended and nurtured. Think of grief as a person knocking on your door who really wants to see you. They knock incessantly...When the knocking starts, instead of hiding, you can take a deep breath and welcome this person into your home. You set a few reasonable boundaries as to how much time you have to give and then you put the kettle on. You settle in for some hot tea and conversation. As the visit progresses, you notice that it isn’t as bad as you thought it would be. You are discovering that this person you had always hidden from is wise and has much to offer.”

And later:

“Trust that the deeper you allow yourself to know your grief, the deeper the joy you will feel when grief's visits get further and further apart. There is no barricade large enough to keep grief out. Welcome it with open arms, serve it warm tea and sit with it without judgment, knowing that grief will come and then it will go, as long as you give it the attention it needs.”

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A new son, a new path

In case you missed the cover story of our last print issue, it's about one mom's journey to accepting her son's complex medical needs given disability is viewed as a taboo in her home country.

And in talking about complex needs, there's an excellent piece by a parent in the British Medical Journal called Never say never about our child.

It tells the story of a family raising a child with Trisomy 18, and how, when they first received the diagnosis, there was a change in how doctors viewed their daughter. For example, every time she was admitted for a surgery, they were asked whether they wanted her resuscitated. "Being asked the resuscitation question so often made us feel that doctors were questioning Isabel's right to live," the author writes. She includes five pieces of advice at the bottom of her piece on how health professionals can better support families like hers.

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How the tyranny of 'normal' hinders rehab

By Louise Kinross

In 2012, 25 scientists from six countries came to the University of Toronto to talk about new ways of looking at rehabilitation for children and adults. The result is Rethinking Rehabilitation: Theory and Practice, a book co-edited by Holland Bloorview scientist Barbara Gibson.

BLOOM: Why is there a need for this book?

Barbara Gibson: Much of what we do in rehab is about helping people to thrive in their lives—sometimes as they are. But because what we do comes from a medical tradition, there’s an assumption that disability is a 'problem' that needs to be solved. Much of what we're doing in research is still trying to 'fix' impairments. This assumption structures what we do and how it’s funded. Even though we talk about how we’re interested in quality of life, participation and inclusion, rehab is mostly thought of as a branch of medicine and funded largely by government ministries of health. The message we unintentionally send in rehab is that the child or adult needs to change, and maybe that’s not always the right message. We'd like to help people to thrive or flourish or live well—something that’s central to the goals of rehab programs—by expanding our thinking beyond the underpinning of medicalization.

BLOOM: What would be a medical assumption underlying rehab?

Barbara Gibson: In one of the chapters, the author, who has spina bifida, talks about needing a hip replacement for hip pain. Over and over again, she had to fill out questionnaires that asked how difficult it was for her to carry groceries or to climb the stairs without a railing. These are standardized assessments we use all the time in rehab that assess physical function. She used a wheelchair and she said 'None of these questions apply to my life, why am I filling these out?' And the assumption is that your quality of life is lower if you have trouble walking up stairs, or if you use a cane. We're not trying to get rid of the medical, but to be reflective about how we use it.

BLOOM: It must be demoralizing to be constantly compared against a norm that doesn't make any sense for you.

Barbara Gibson: 'Normal development' is an underlying principle that's ingrained in children's rehab. The way we provide therapy is to help children approximate the normal developmental trajectory as much as possible. Having said that, we know most of the kids we work with won't be able to do that. We know from the beginning that they won’t achieve ‘normal’ functioning and yet we test them against these parameters all the time and send them to therapy and say your goal is to do 'X.' In the end the child and parents know that they didn’t reach these goals, that they ‘failed’ according to the tests. By comparing children to those normal milestones we set up children to not be successful and to internalize those ideas. And parents, too. What parent doesn't look to see if their child is following the milestones and not feel disappointed if they're not?

BLOOM: What would be a different way of looking at rehab?

Barbara Gibson: The last chapter is about how we teach people with new spinal cord injuries to use wheelchairs. It explains that this is more than learning a skill—it’s adopting a new way of understanding their body, and by extension, themselves. The authors ask you to imagine if you were in an accident and you emerged as a different gender, or a different race. What kind of therapy would you need to learn to become a new kind of person, while still having elements of the old person?

BLOOM: I read that chapter and it was interesting because they likened learning how to use a wheelchair to making it a part of your body. So the wheelchair is more than something mechanical?

Barbara Gibson: Wheelchair users tell us ‘it’s just part of me. I can’t imagine myself without it.’ And often they don’t like it when someone touches their chair because it feels like they’re touching their body. It's a different way of doing things and ‘being.’ It's about how you incorporate the wheelchair into how you feel about yourself. Someone with a congenital impairment has the same process. They grow up figuring out who they are, how they think about themselves, and the rehab intervention they get shapes that. We need to do a better job of helping people have a positive sense of who they are in the world.

BLOOM: I think our overfocus on independence often works against that.

Barbara Gibson: A new way of looking at things is the notion of assemblages, which I write about elsewhere. Instead of talking about independence we talk about 'what are the dependencies that can help people live well?’ We talk about a conglomeration of elements—the person, the wheelchair, their speech generating device, their mom, a house that's designed for them. So we look at whether this assemblage of elements enables practices or disables them. We don't analyze whether the person is independent, but whether their dependencies are enabling. The idea is basically that it's completely okay to use whatever you need to use.

BLOOM: How is the book structured?

Barbara Gibson: There are three sections. The first sets the stage with where we are right now in rehab and where we came from. One of the chapters is about the history of rehab, starting at World War II. The second part is about how we apply these ideas in relation to particular populations or topics, like identity. For example, one of the chapters is about whether the setting you're in makes a difference to recovery.

BLOOM: What kind of things would be different in settings?

Barbara Gibson: We talk about therapeutic landscapes and the messaging in the environment. For example, is it a place for 'sick people' or does it enable you to think about what's new in your life and to think about your identity in new and different ways? Does it repress emotion? Sometimes patients are made to feel that they can only express positive emotions with professionals. You know, 'we're all cheerleaders here.'

BLOOM: There is sometimes that pressure to remain positive no matter how you're really feeling and that's exhausting.

Barbara Gibson: Setting is not just about the physical, but also how the environment is structured and how scheduling works. The last section of the book is about if we take this seriously, what would we do? If we rethink rehab, what might it look like?

Rethinking Rehabilitation can be borrowed from the Holland Bloorview library. It’s targeted to researchers, clinicians and students, but will also be of interest to families. The Canadian Institutes of Health Research and the Health Research Council of New Zealand funded the event at the University of Toronto that brought the 25 researchers together.

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