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 “...you 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 375 health facilities in the U.S. and about 100 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.

Wednesday, April 22, 2015

Dutch student heads home with new vision of advocacy

By Megan Jones

In February, 23-year-old occupational therapy student Anna-Lena Burdick arrived in Toronto from the Netherlands for a 14-week study placement at Holland Bloorview. While here she says her perspective on working with children with disabilities shifted dramatically. She learned about the concept of advocacy, and the role health professionals can take in being a voice for their clients. In the Netherlands the idea was one she’d never considered. There, she says, the concept isn’t widely embraced, and, in her experience, students aren’t taught how to become advocates for their clients.

Below, Anna-Lena, who grew up in Germany, shares her experiences and insights as a student working at Holland Bloorview and why she believes clinicians need to back their clients inside the clinic and out.

BLOOM: How long has your work focused on disability?

Anna-Lena Burdick: Not very long. I started to focus on disability when I began studying occupational therapy at university three years ago. Before that I wasn’t really exposed to people with disabilities. I’ve always liked working with kids. But Holland Bloorview was my first real exposure to kids with special needs.

BLOOM: You travelled far for this placement. What made you choose Canada?

Anna-Lena Burdick: Back in the Netherlands, the first couple of years of study are theoretical. You spend a lot of time learning about frameworks and different models of care. Many of the frameworks we learned about were developed in Canada, and a lot of our practice is based on what this country is doing already. You have a leading role, from my perspective. I wanted to see the best example of occupational therapy in practice. And plus, I also knew that Holland Bloorview was a leader in pediatrics and rehabilitation.

BLOOM: One thing you discovered here was the concept of clinicians acting as advocates for clients. How did that come about?

Anna-Lena Burdick: I was approached by my supervisor Darlene Hubley and she asked if I would be interested in working with her on a research project on the topic. She explained the concept of advocacy to me. It wasn’t something I had heard of before. It was totally new to me. Immediately I found it interesting and told her I would love to participate.


But when I first started I didn't know how to translate the word 'advocacy' into Dutch and German and it was difficult to communicate the idea of the project without using the English word.

I looked up 'advocacy' on Google Translate in Dutch. There are other words in Dutch that are similar, but not the same. The concept of advocacy never came up before in classes at my university. The term wasn’t mentioned, and neither was the idea of the role we might have ourselves.

Fully-trained clinicians in the Netherlands may understand the concept and know when they have to do it. But from a student’s perspective, I feel that we need some more guidelines. We need professionals to mentor us and tell us, “Here is a good example of a situation where we need to advocate. Here are the steps we can take to advocate for this client.”

BLOOM: Tell us a bit about the research work you’ve been doing.

Anna-Lena Burdick: We ran a series of interviews with a variety of people: students and clinicians, educators at the University of Toronto and one of the parents from the Family Resource Centre at Holland Bloorview. We were trying to figure out whether people were aware of their potential role as advocates, how professionals integrated advocacy into their work and whether students were aware of how to do it.

On a personal level, it was very interesting to see what each of their perspectives were, and to gain more of an understanding of what I should be taking on as a junior professional.

BLOOM: What did you take away from those interviews?

Anna-Lena Burdick: You can advocate on a micro level. For example, say the child you are working with needs special support at school. You could write a letter to the school’s administration explaining why it’s important the child get access to a particular program or therapy.

Or you can advocate at a higher level. You could try to influence the law. Even something as simple as noticing a building in your community that isn’t accessible for people with wheelchairs, and lobbying the government to make that space accessible. These may seem like small things but they can help others to achieve the fullest possible quality of life.

BLOOM: Why is it important for health workers to be advocates?

Anna-Lena Burdick: As occupational therapists, we take a holistic approach to patient care. We try to focus on the client and their individual goals. We build a pretty good idea of what the person needs, what their strengths and challenges are. But we also look at the environment they’re in. We try to see what barriers exist and how we can modify situations to help the client participate as fully as possible. We’re very aware of our clients’ everyday lives. We have such a comprehensive view of their needs and their goals. That makes us great candidates to advocate for them.

As a [clinician], you can also teach your clients to advocate for themselves. That can help them achieve more independence, which is a very important point, particularly from an occupational therapy perspective.

BLOOM:  What is the most important thing you’ve learned here?

Anna-Lena Burdick: The experience broadened my horizon a lot. I learned not always to focus on diagnosis. A diagnosis helps give an idea of the strengths and difficulties the child might have. But it has limits because each person is different. As a student it can be easy to get stuck on the diagnosis. But it’s very important to look at the child and their family as a whole, to focus on what that individual child’s strengths and [challenges] are, and on their particular goals and how to help achieve them.

I also love the idea of a family-centred focus. I think empowering families by making them a part of the team and a part of the child’s treatment is so important. I also realized that you always have to be aware that parents can have different goals than the child. And it’s important to listen to both. These two ideas were very new to me.

I’d like to go back to my university and encourage other people to think about advocacy and to become advocates themselves. I don't think many students know a lot about it. I want to try to inspire them with what I learned.

BLOOM:  How would you describe Holland Bloorview?

Anna-Lena Burdick: I think it’s just an amazing place. My supervisors were very focused on my learning goals. I feel as though they wanted my input and appreciated my perspective as a student. I also felt welcome as an international student. It seemed as though everyone wanted to get to know me and my story. It was a great feeling, and I’m very thankful for that opportunity.

Holland Bloorview has such a leadership role in children’s rehabilitation. I got the sense here of how important it was to help children reach the fullest quality of life.


Anna-Lena (bottom right) presenting her research work with Darlene Hubley, interprofessional education leader and Anna-Lena's placement supervisor.

Monday, April 20, 2015

How to hear what the heart is saying

By Louise Kinross

Last year at an American conference on patient/clinician communication, Holland Bloorview family support specialist Lorraine Thomas participated in a simulation.

An actor playing the part of a patient was lying in a hospital bed in his robe. He had a number of scripts for clinical interactions and randomly picked people in Lorraine’s group—including doctors and nurses—to role play the part of the health professional.

“With me he started by saying ‘My mother had this disease and now I have it too,’” she recalls. “I said ‘I’m sorry to hear that’ and he came back immediately with ‘But it’s not fair. Why did it happen to me?’ He was there to push our buttons and take us out of our comfort zone. Then he said: “I saw my mother die of this disease and it was awful. I promised myself I would never let myself go this way. I looked after myself and had regular checkups and it still happened to me.’ Then he started sobbing.”

Lorraine says she was so concerned about appearing “professional” in the eyes of the clinicians watching, that she panicked. “When the actor started sobbing, it was a little too real. I got flustered, wondering whether I should hold his hand or pat him on the back. But I was aware that the other health workers might think that wasn’t professional. I said ‘I know it isn’t fair, but sometimes that’s how life is.’ The actor and the group groaned and said ‘You can’t say that.’”

Lorraine had “overthought it,” the group told her. “I needed to respond to the emotions behind the patient’s words. So it would have been better if I made a physical gesture—like patting his back or holding his hand silently. Or even saying “‘I'm so sorry, this is very hard for you.’   

“The actor said the way I responded made him feel like I wasn’t really listening to him. That I was glossing over things by making them abstract. He said ‘I don’t care about “that’s life.” This is happening to me, and this is personal.’”

At the conference Lorraine learned about “deep listening”—described as a whole body experience meaning “I give you my ears, my eyes, my undivided attention and my heart.”

Instead of jumping in to resolve or fix the client’s or parent’s problem, she says, “we need to look beyond the words at what is the emotion under it. We need to acknowledge that emotion, whether it’s sadness or anger or fear: ‘I understand that you’re afraid or very worried. I hear you.’”

Often clients and parents aren’t looking for an answer, or to be given a list of “action items” to resolve the problem. In many cases, they have problems that can’t be resolved in a logical way.

“The group felt I was trying so hard to be professional that I was holding back on my emotions and I didn’t trust my response. Sometimes briefly squeezing a person’s hand or a neutral touch on the back or shoulder can physically ground people. It’s a way of saying: ‘I’m here okay? I’m here and you’re here.’”

Lorraine says the most important thing in difficult clinical conversations “is to be present and in the moment. The person in front of you needs to be the only thing on your mind. Don’t start thinking ‘I’m going to make this observation’ or ‘I’m going to ask this question.’ Just be present in the moment.”

Friday, April 17, 2015

I want a doll (or toy) like me

Here are some example of dolls and stuffies adapted to include stomach tubes, braces, wheelchairs and more. A number of you sent photos in. We couldn't include them all, but hopefully these will give you some ideas for your own dolls and toys.

Thursday, April 16, 2015

Four dads on raising kids with autism


Wednesday, April 15, 2015

How a tattoo made my disability cool

By Tim Rose

Hi there! My name’s Tim and I have a disability. But this article is not just about living with that disability, or about how it impacts my life. It's about the importance of celebrating disability and how it has led to very good things for me. It's also about some ink that I wear with pride on my arm.

Before going further, let me introduce myself more fully. I was fortunate enough to be born with cerebral palsy spastic quadriplegia. Growing up, I used to get frustrated with the limitations that my disability put on me. I couldn’t play sports, I couldn’t stay up past my parents’ bedtime and I couldn’t always play how I wanted to play. For years, these limitations bugged me. But then something clicked in my head: I needed to embrace my difference, not let it beat me. No matter how frustrated I got, it was a part of my life and it was up to me to make it cool. I did it with a tattoo.

Yup, almost five years ago I decided to embrace my disability by getting the blue wheelchair emblazoned on my right arm in permanent ink. I had talked about it for years as a way to deal with some of the challenges that my disability posed. Not only did it look awesome, but it made me feel like I was taking ownership of my difference. Yeah, my body is different from most, but that difference is not something to hide from. When I did it, I wrote a blog that has today inspired me to revisit what it meant to me.

You will be happy to know that, all these years later, I still love it. In fact, I love it for so many more reasons than I did when I first had it etched into my pasty arm (beyond the obvious that it looks great). For a start, the day I got my tattoo was the day I met the amazing woman who is now my wife. For another, it represents my disability positive career turn. I now run a business called Disability Positive Consulting where I help businesses, schools and health workers look beyond deficits and gain a new appreciation for what it is to live with disability. My tattoo reminds me every time I glance at it why I’m doing what I’m doing. Lastly, it has been a huge confidence boost for me and the way I embrace my difference.

When I first did it, I talked about how it helped me define my disability. Here is a snippet from that original post:

And so my tattoo is my way of taking control of my disability and my identity. I am branded now, not by society, by my own choice. My disability does not define me, I define it. My physical limitations are most certainly still here, but I have grabbed my disability and made it a trait to embrace. The tattoo, to me, represents a very true part of me. Yes I have a disability, but on my own terms.

In reading this over again, I'm struck at how this was the seed for me to begin to think positively about disability. It was the step I needed to take to start this amazing road that I’m on. As I look at the tattoo now, I feel that same empowerment and strength, it’s just reached a new level. I have now devoted my career, and taken the leap as an entrepreneur, in large part thanks to that tattoo and the way that it freed me.

Let me be clear that I'm not saying to be “disability positive” you have to have it inked in your skin. But whatever you draw empowerment from, hold on to it and celebrate it. Whether it is a family member, a movie or even a particularly hot article of clothing, embrace the feeling that it gives you. It just so happens that my mark is a tattoo. Remember, having a disability does not mean your life cannot be filled with awesome experiences. I had struggles, in fact I still do, but I also have a lot of opportunities because of my disability. It’s okay to get frustrated, but hold on to whatever you have that makes you feel good.

Photo by Jamieson Dean

Tim Rose is a Toronto-based disability activist, writer and speaker who believes in celebrating disability in all its forms. Driven by this idea, Tim founded Disability Positive Consulting, an innovative business to promote positive ideas around disability in businesses, schools and communities. 

Tuesday, April 14, 2015

A sister asks 'Do you see me?'

By Cristina Breshears

Dear Mom and Dad:

Even though I was born into the chaotic aftermath of my big sister’s diagnosis, I wasn’t born understanding it. I saw how difficult things were for you: how hard you worked, how hard she worked. I saw the different people come to our house to help. I saw your tears and heard your prayers. But I couldn’t know what was wrong. I didn’t know what to expect or what I should do. It was my everyday normal, it was all I ever knew, but I didn’t know. 

I need you to help me ask the hard questions so I can better understand.

Although I could be scared of some of the things that happened in our house, I didn’t know I could come to you for comfort. Sometimes I was sad and sometimes I was angry. And sometimes I really didn’t know how I was feeling. You were so busy helping my sister and you were tired; and I saw how sad you were sometimes. I didn’t know that it would still be okay for me to come to you and tell you all that I was feeling. 

I need you to invite me to share.

Because I was the little sister, I didn’t know it was expected that I would someday surpass my big sister’s abilities in walking, in talking, and in school. It felt wrong when I could read the book to my big sister, and sometimes I thought I could see your sadness at those bittersweet milestones. I thought I reminded you of what might have been, and sometimes I felt guilty. I didn’t know it was okay and good for me to grow bigger and stronger and smarter. 

I need you to encourage me and celebrate my milestones and accomplishments.

Because my sister needed so much of your time and attention, it sometimes seemed that she was all anyone could see. I didn’t know that my efforts to stay quiet and still, to be good and not make trouble, would eventually lead to me feeling invisible sometimes. I didn’t want to take attention away from her. 

I didn’t know it was okay for me to be noticed. I need you to come find me.

Because your two hands were so often full of what needed to be done, I offered my own two small hands to help. It was a way I could be close to you. It was how I could be part of our family whose clock and calendar revolved around my sister. 

I need you to remind me that my efforts are appreciated but never expected and that your love for me is not contingent on my always being helpful.

Although standing up for my sister against bullies and discrimination was second nature to me, I didn’t know how to stand up for myself. I could hold her hand and help her hold her head up high, I could fight against injustices and lobby for change, and still feel too inconsequential to stand up for myself. 

I need you to show me we are all worth fighting for.

Although you and my sister taught me how to be compassionate and speak out for those who are marginalized, I didn’t know how to show myself that same compassion. 

I need you to help me understand that everyone deserves compassion, second chances, a hand-up, a shoulder, an ear, a hug—even me.

I was born three years after my sister’s brain damage. Her diagnosis and its effects 
were all I ever knew, but I didn’t know.

Love, me

Cristina lives in Portland, Oregon and encourages parents to check out the resources at The Sibling Support Project. 'All the feelings parents experience and share with their therapist, best friend, support group or spouse are also felt by their typical child. But many siblings have nowhere to go with all these feelings.' Sibshops are groups where games, new friends and discussion help siblings see that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. None of this support blames parents, Cristina says, and all of it can be life-affirming for a sibling.  


Sunday, April 12, 2015

Beauty exposed

“I was nervous… about seeing my own back... something that nobody sees... out in the open. I thought my back was going to be… what’s the word... grotesque? After I saw it, I thought, that’s not bad. It is my body and that’s it.”

By Louise Kinross

Photographer Steve Kean remembers sitting, as a child, on a stretcher, “nearly nude, and being talked about as if I wasn’t there by this doctor and that doctor. There was an ampitheatre with tiered seating and [medical students] watched. I was looked at as spina bifida, not as a person.”

That early indignity fuelled Steve’s desire to shoot portraits where he’d give adults with spina bifida “a choice about how they wished to be looked at and what they wanted to show.”

The result is Front to Back, a series at Strange Beauty, this year’s Tangled Art & Disability Festival at 401 Richmond St. W. in Toronto. “The idea is that these are whole people,” Steve says. “They have a whole story to tell, just like a book, which you read from front to back.”

The back has particular meaning for people with spina bifida, because it’s the spot where surgery is often needed to push part of the spinal cord, which doesn’t grow properly in utero, back inside and close the opening. Due to nerve damage, many people with spina bifida use wheelchairs.

In addition to a traditional portrait, each subject in Steve’s exhibit has a second image of their exposed back, which in some cases includes surgical scars. “It was an opportunity for them to show off their back and for me to light and photograph it as beautiful,” Steve says. “It’s stark and out there. These people were brave. Front to Back is a path to a sense of dignity and control over what happens to us. Audiences will see people first.”

The exhibit includes moving comments from each subject on why they participated.

“This is the scariest thing I could ever do. I had to do it for myself. It was time to expose something that all my life I had found ugly, embarrassing, humiliating. That’s the gift we’ve been given with this project—the opportunity to completely expose something that all our lives we have been hiding.”

Make sure to visit both Gallery 44 and Abbozzo Gallery in 401 Richmond St. W. Steve will be giving a talk on the exhibit on April 25 from 3:30 to 4:30 p.m. The building is full of Strange Beauty exhibits and is well worth the visit. Click on these images to see them larger. And you may recognize one of the models at the exhibit!

Friday, April 10, 2015

Note to self: Protect my mind

By Louise Kinross

A new study shows that parenting kids with disabilities over a long period of time jeopardizes cognitive function—especially memory—in mothers, but not in fathers, due to chronic stress.


The study—published in the Journals of Gerontology: Series B last month—used a large U.S. survey of parents from 2004 to 2006 to compare 128 parents raising disabled kids with 512 parents whose children did not have disabilities. The children with disabilities had autism, cerebral palsy, Down syndrome, attention deficit or intellectual disability.

Parents were tested on verbal memory and fluency, mental processing speed, reasoning, working memory and ability to switch their attention. Researchers also assessed parents’ physical and mental health, physical activity, social support and “negative parenting experience.” To determine the latter, participants were asked to rate how true six statements were for them. For example, “I feel good about the opportunities I have been able to provide for my children” and “problems with my children have caused me shame and embarrassment at times” and “it seems to me that family life with my children has been more negative than most people’s.”

Interestingly, at a younger age, mothering a child with a disability was associated with better performance on memory tasks, but by age 60 the pattern had reversed itself. Mothers who had higher levels of “negative parenting experience” were more forgetful, leading researchers to conclude that chronic exposure to parenting stress predicted cognitive decline for mothers of children with disabilities. Seventy-six per cent of mothers of kids with disabilities reported significantly higher levels of negative parenting experience compared with 46 per cent of the comparison group mothers.

The study found that mothers of children with disabilities tended to be much more depressed, less physically healthy and to feel less in control than mothers without disabled kids. They also had more problems handling their kids and less support from friends than women whose children do not have disabilities (yup, we’ve seen parent isolation in other studies about raising kids with disabilities).

Mothers with a strong support system, a sense of control and a history of regular exercise had better memories than those without.

This point is critical. “Keeping quality friendships, sense of control for life and [a] physically active lifestyle would help to protect these parents from accelerated cognitive aging,” said Jieun Song, a researcher at the Waisman Centre at the University of Wisconsin-Madison, who led the study.

I classify all of these things under the header “self-compassion.” In her new book
Parenting Through The Storm, Ann Douglas says being kind to yourself in the way you would treat a friend is one of the best things you can do to support a child who is struggling (see this recent blog post). I know, it's counter-intuitive, isn't it?

But still, if you’re a mom of a child with disability, you’re probably thinking: “Oh great. Now, to add to my never-ending “to-do” list, which includes taking my kid to therapy and multiple specialist appointments, doing therapy exercises at home, advocating at school and in the community, making my home the ‘funnest’ place for playdates on the block, and doing my child's bathing and physical care, I need to step it up by going to the club regularly and being a social butterfly. To be honest, I’m not sure how you go about increasing number 3 in the study—the sense of control you have over your life! Isn’t that an illusion? Ha ha! But I digress.

So, how do you find the time and energy to get fit and healthy and socially connected when you’re already running flat-out 24-7 with your kid with special needs?

Today I heard Gretchen Rubin, author of The Happiness Project and
Better Than Before: Mastering the Habits of our Everyday Lives, give a talk at the University of Toronto’s Rotman School of Management.

Gretchen spoke about her new book on habits—how we can develop good ones and break bad ones. I think we moms of kids with disabilities can benefit from some of her research and tips.

Good habits are “freeing,” Gretchen said, “because they eliminate decision-making and self-control” (in the case of the latter, if you’re like me you’ll find yourself lacking). Gretchen noted that if you’re in the habit of going to the exercise club at 6 a.m. every morning you don’t think about it, and you don’t fret about it, you just go.

So why is it so hard to drop bad habits or develop ones that we know would make us happier—or, in the context of the study on cognitive aging in moms of kids with disabilities, protect our brain power?

Because we don’t all have the same aptitude for forming habits or the same attitude towards them, Gretchen said. There isn’t one solution that works for everyone. “It’s important to figure out what kind of person you are” because that will determine which of 21 strategies, or a combination thereof, may work for you, she said.

One approach I think we mothers can try to help us work into our schedule habits that keep us physically and mentally healthy is called the “strategy of four tendencies.”

This is about how we deal with expectation—both outer expectations, like a work deadline, and inner expectations—and varies from person to person. Gretchen said we tend to have four responses to expectations. “Upholders” readily respond to outer and inner expectations and see them as equally important. “Questioners” will meet expectations if they agree they make sense. They hate arbitrary demands and need to turn an external request into an internal expectation to make it work. “Obligers”—the most common style, and certainly mine!—meet outer expectations well, but struggle to meet inner ones. Finally, “rebels” resist all expectations.

In talking about “obligers,” Gretchen noted that we’re often dissatisfied and frustrated because we’re so good at meeting other people’s demands but so bad at taking care of ourselves. To reverse this, we need to create “external accountability” for being kind to ourselves. That could mean paying for a class or coach, creating an accountability group with friends or similarly-minded people online, or coming up with funny ways that force you into good habits.


For example, friends who want to help each other work out regularly switch shoes at the end of their workout so they “have” to return for their next scheduled workout (otherwise the other person can’t exercise). One woman who wanted to get up at 6 a.m. every morning programmed Hootsuite to post an embarrassing message about her on Faceboook at 6:15 unless she got up and disabled it. Someone who wants to read should join a book club.

I think we moms of kids with disabilities should band together to create habit groups (except with a much cooler title)—perhaps online—where we encourage each other to do healthy things a certain number of times a week. What do you think?

Gretchen also shared other habit strategies.

For example, if you’re an “abstainer,” it means you do well when you give up a bad habit “all together.” This means not purchasing Haagen Dazs at the grocery store or keeping Hershey’s kisses in your office desk and deleting Candy Crush from your iPad.

Another tactic involves giving yourself “healthy treats. When we give ourselves healthy treats we energize ourselves and feel comforted,” Gretchen said. Stay away from food, drink and shopping in this category, and instead, be imaginative: listen to a favourite podcast or buy yourself some music.

When developing good habits, it's useful to consider goals as “milestones” rather than a “finishing line.” For example, many people commit to training for a marathon, then stop running. “That’s because the idea of the ‘finish line’ disrupts the habit,” Gretchen said. “You have to start over, and that’s hard.” So instead of telling yourself you have to lose 20 pounds, tell yourself you need to eat healthy forever.

Gretchen says “outer order contributes to inner calm” so use her one-minute rule to reduce clutter. If you can do it in less than a minute—hang up a coat or put some papers in the recycling, for example—do it. Instead of feeling you have to overhaul your entire house, “do it one minute at a time.”

Finally, “the strategy of convenience” involves making healthy things convenient, and unhealthy things inconvenient. For example, disable one-click shopping and put your cell phone in a closet instead of in your back pocket. “To change a complex habit you may need to use three to five strategies,” Gretchen said.


If you want to get a copy of a starter kit to help you begin a habits group with others, where you encourage each other, e-mail Gretchen at grubin at gretchenrubin dot com.

I know I'm going to!

Thursday, April 9, 2015

How a family that shares a genetic condition creates a vision

By Kenneth Springer

I’ve been pondering what to write for BLOOM given that I’m a parent with a disability and have two children who have inherited the condition from me. It’s not often a parent can tell their child that they completely understand what it’s like to have their diagnosis and mean it. After all—unless you share the condition, how would you know?

When told your child “isn’t normal,” parents may react differently, whether it’s shame or fear of the unknown or guilt or even disappointment and resentment. What will others think? Does having a child with disabilities reflect back upon us parents? Whose fault is it? Will we be judged and mocked? What happens now?

In my case, I skipped the above and was faced with one question: should I have children? I already knew firsthand some of the challenges they’d face. I’d tasted the pain of being different before they would even discover what being different means. In essence, I would see myself mirrored in my children.


The arguments for having or not having children went around in my head like some complicated paradox question that has no answers. To not have children because I feared passing on the condition meant I was denying my life’s existence and concluding that my experiences weren’t meaningful or valued. That is nonsense, because I’ve been lucky and blessed in many ways: I have many happy, cherished moments and I found and live with the love of my life. Yet to pass on a condition that will fill my children’s lives with challenges might be considered unfair, particularly since I hadn’t fully accepted my own differences at that time.

In the end, I trusted that if the children had a life similar to mine, walked a similar path and found love, then it would be worth it. I convinced myself that if I shared my own experiences with my children then they could leverage my past and do more than what I have done. Perhaps it was that I believe in hope or fate. 



For the record I’m legally deaf and have an extremely rare congenital condition called Craniometaphyseal Dysplasia. CMD is a skeletal disorder that can cause mixed hearing loss, vision impairments, facial changes due to bone thickening, and other complications. In some extreme cases a shortened lifespan is expected. I wear hearing aids and rely on the little hearing they provide and lip reading to communicate.

My children, first Elleleen and two years later Huey, inherited CMD and both are hearing impaired. Their early development progressed well thanks to my wife Eileen who ensured their learning included social and educational development. This was a plus for me because although I’m a high achiever, I was a shy person when young. Being shy was often a bigger obstacle for me than having the disability itself. I didn’t want my children to face that obstacle. Shyness is a symptom of being uncomfortable with who you are. This is made worse when it becomes a habit. As parents, we need to ensure that our children are confident with themselves as individuals. Having confidence is necessary to excel in life.

At the age of four, Huey became extremely sick. Huey had pain as a result of fluid buildup in his head. The doctors questioned how he had such a high tolerance for pain and why he was even alive. Immediate surgery was required with no guarantee that he would survive. If he did, the surgery might leave him with a brain injury.

But doing nothing meant death.

Miraculously, Huey survived the surgery but lost his eyesight in the process: he became totally blind in one eye and legally blind in the other. Memories of that time still feel raw and painful, especially the realization that Huey would be hearing impaired and legally blind. Given the massive lifestyle changes required to cope with blindness, my wife quit her job to care for our son.

For the first time in my life I was fearful and worried for Huey’s future. What would his future employment prospects be like? Would he be able to earn a living and be independent? All of the hopes that I had for him were dashed.

Naturally, my wife took this setback very hard. This made her more determined to ensure that the children had a strong foundation that would enable them to do what they wished in life. She encouraged them to stand up for what they believed in and to participate in activities and enjoy life. 


Gradually, Huey put the family back on track with the return of his bubbly personality. Yes, life had changed, but the process of facing challenges and finding a way through them hadn’t. Huey learned Braille and how to adapt in a world he couldn’t see. As a family, we learned with Huey and supported each other.

One of the disadvantages of having a disability is that you’re constantly underestimated. People expect the worst from you and conclude, for the most part, that you are hopeless, have no value and won’t amount to much. I’ve always hated this attitude. As a result, I never wanted to quell my children’s ideas or feedback.

Rather than stomping out weak ideas or rejecting others based on a difference of opinion, I found it better to be open-minded. I encouraged my children to explain their way of thinking and to debate ideas fairly. As a result, I found I was always learning from them. When I don’t understand their logic or reasoning, I try to understand why. I think this was pivotal in our children’s development. 



For example, Huey was interested in learning to use the computer because he wanted to be like his older sister. Unfortunately, because he can’t see he struggled with web browsing accessibility.

The web is very visual in nature. Sighted people generally develop skills to skim over information of little value and quickly extract what is relevant. This improves with the familiarity of the web page layout.

We all have different ideas as to what works best.

A blind person prefers information structured in a way that enables them to find it quickly. The aesthetics offer no value and may make things worse if they can't find the button they need on that page. People with autism may prefer to have information presented in a simple way so that they aren’t overwhelmed with a flood of information and colour.

One day when Huey was nine he got frustrated and listed everything that made it hard for him to use the Internet. Then he suggested how it could be improved. He wanted to be able to control, categorize, filter and select just the information he wants. In reality, Huey was suggesting an idea that I considered to be impossible: the ability to display websites in a way that match a user’s preferences for how information is displayed and interacted with. This would make web browsing easier, smarter and even fun, with you in control.

I’m a computer engineer, but Huey was explaining the Internet to me in a completely new way that was eye-opening. It seemed impossible, but I couldn’t dismiss his ideas. I was compelled to learn more. I researched within the community and found that accessibility issues were prevalent and Huey wasn’t alone: many people were struggling with this.

It soon became evident that to overcome the problems we needed to be more visionary than the current accessibility standards.

So we started a project called Hueyify. Hueyify is a software that allows you to control the way web content is displayed and the way you interact with it.

We’ve been working on the Hueyify project for more than two years now and every day we tackle the challenges and work through the stages of moving towards the goal of helping those who need it. Hueyify will be free for anyone who is legally blind or autistic worldwide.

Being a key part of this project has helped my children feel valued. They’ve each contributed ideas that have built their self-worth. From my experience, having self-value counteracts the negatives from disabilities.

In raising my children I’ve found that learning is a two-way street. I learn and develop along with my children.

I’m always sharing experiences with my children, whether it’s the way I was confronted with a new challenge or how someone reacted to my condition.

Often my children will suggest what I could have done differently, or tell me something isn’t worth worrying about and that I need to see the funny side of things.

My children’s acceptance of CMD taught me to find my own peace within myself. My children are truly my teachers.


Kenneth Springer is a computer engineer who lives with his family in Victoria, Australia.

Monday, April 6, 2015

Who, and what, is perfect?

By Louise Kinross

Icelandic photographer Sigga Ella created a series of portraits of children and adults with Down syndrome to question whether a future without genetic diversity is desirable. Her exhibit First and foremost I am has been shown across Iceland and is moving to the Warsaw Festival of Art Photography in Poland next month. Please click on the photo above to see it in full. We interviewed Sigga.

BLOOM: What did you hope to convey in your portraits? 

Sigga Ella: To see the beauty of mankind we should celebrate the diversity. The reason I did this project was because of [a] radio interview I heard. They were discussing the ethical questions we now face—that we can choose who gets to live and who doesn’t, as the aim with prenatal diagnosis is to detect birth defects such as Down syndrome and more. Where are we headed? Will people choose not to keep an embryo if they know it has Down syndrome? I had an aunt with Down syndrome, Aunt Begga. It is very difficult for me to think about the elimination of Down syndrome and her at the same time.

The title of the project comes from an article about these ethical questions written by Halldóra Jónsdóttir, a 30-year-old woman with Down syndrome. She is a student, works at a library, is an amateur actor, musician and much more. She is one of the people featured in the project, as is her article.

BLOOM: The facial expressions and body language are each so unique. How were you able to capture the essence of each one?

Sigga Ella: I spent some time with each person so I could show, as much as possible, who they are. Each of the photoshoots was unique, lasting from one to three hours. Some of the models I met before the shoot, but some I met for the first time at the studio. I wanted each photograph to show us a person with his or her own special characteristics. I wanted to bring out their uniqueness as individual human beings and the fact that by no means are these people all the same, even though they share the same syndrome. For most of the sessions I was alone with the model, so we talked, but the subjects discussed were as diverse as the models themselves. They are all different ages and at different places in their lives. My goal was to show diverse personalities.

BLOOM: How did you find your models? 

Sigga Ella: I contacted the
Icelandic Down Syndrome Association and through them and some friends (and friends of friends—Iceland is a small country), I managed to find 21 people of every age (nine months to 60 years) [with an even] gender ratio. Everyone I asked agreed to participate and working with them was really enjoyable and rewarding.

BLOOM: What was the reason for photographing them with the same wallpaper background?

Sigga Ella: I was looking for simplicity and I wanted the project to be as one whole but make the subjects stand out. I wanted to [emphasize] that all flowers can grow and flourish together.

BLOOM: Can you describe your experience having an aunt with Down syndrome?

Sigga Ella: My aunt Bergfríður Jóhannsdóttir was 29 years old when she died of a heart defect. I was 12 years old when she died. She was the youngest of 12 siblings. For most of her life she lived with my paternal grandparents and my aunt Herdís Jóhannsdóttir. When my grandparents died, only three months apart…she moved to an assisted living home. She spent every other weekend and summer vacations with Herdís who was like a second mother to her. Herdís always reminisces about Begga's sense of humour. They used their summer vacations to travel the country and visit their siblings. Begga loved spending time with her relatives. Begga enjoyed travelling as well as working with her hands and she did a lot of cross stitching. We were good friends and I have a lot of good memories with her. We did puzzles together and could watch a video about the legendary twins Jón Oddur and Jón Bjarni endlessly. She was the youngest of 12 siblings and I was the youngest of seven so I guess we related to one another in that way.

BLOOM: How do you feel about testing for Down syndrome and the high rate of termination?

Sigga Ella: I am not against prenatal genetic testing for abnormalities but I think we need to stop and think [about] what’s next. In the years 2007 to 2012 there were 38 fetuses with a heightened risk of Down syndrome in Iceland and in every case the pregnancy was terminated. I think it’s necessary to open the discussion and educate people more about Down syndrome. It’s not a disease or a flaw. Parents of children with Down syndrome, just like parents of healthy children, wouldn’t exchange them for anything in the world.


BLOOM: Why is diversity valuable, including differences in ability?

Sigga Ella:
We are all unique, that is valuable, and we can all learn from each other.

BLOOM: Where is the exhibit on display?

Sigga Ella: It is currently open at the Reykjavik Museum of Photography. The next exhibition is at the Warsaw Festival of Art Photography in Poland from May 15 to June 15.

BLOOM: Why did you choose to call it “First and foremost I am?”

Sigga Ella: The title of the project comes from an article I found on the Internet which Halldóra Jónsdóttir, a woman with Down syndrome, wrote. I contacted her and asked if she wanted to be part of the program. She said yes and she's one of the people featured in the project, as well as her article:

“Hello. My name is Halldóra. I read this article in the newspaper the other day that caught my attention and at the same time made me angry and sad. There was this woman who wrote something about how people with Down syndrome should not exist. Therefore I would like to share my opinion. I have Down syndrome but FIRST AND FOREMOST I AM Halldóra. I do a million things that other people do. My life is meaningful and good because I choose to be positive and see the good things in life. I go to work, attend school and have hobbies. I enjoy spending time with my friends and family and I like being around people.

“In my world there are all kinds of people, both old and young, disabled and non-disabled. It has taught me a lot and I can see that many of us have some kind of difficulty that we are battling, both physically and mentally. That’s just how life is—it’s not more perfect than that. And it doesn’t matter if you are young or old, rich or poor.

“So I thought: Who is perfect? Who can say that we who have Down syndrome are worth less that anyone else? We are all different and would it be so great if we were all alike?

“My opinion is that it is much more fun that we aren’t all alike, because we can learn so much from people who are different from ourselves. I like learning from others and you are free to learn from me. I choose to enjoy the life I was given, to be happy with what I have and make the best of what I’ve got. It’s not a bad life, or what do you think? This is my opinion.”


BLOOM: What reactions have you had to the series?

Sigga Ella: First and foremost has had amazing reactions. For that I am really grateful. It has been featured in Icelandic newspapers, magazines and on radio. I have put up this exhibition six times in different parts of Iceland. It has also been featured in international media like CNN, Huffington Post and Fstoppers, [a photography news website]. I’ve had amazing feedback from people all over the world. That means a lot to me.


Photo below by Daniel/Visir.