Monday, July 25, 2016

Care tip: Water safety for kids

This adorable child is Scarlett, 7, who has cerebral palsy and is wearing a personal floatation device at her cottage. You may have seen our new care tip column in the last BLOOM e-letter. This is the first care tip on our blog.
Care tip: Water safety for kids

Summer is in full swing, and for many families that means time in the water—swimming, boating and playing. A 2016 study by the Drowning Prevention Research Centre in Canada found that drowning is the second leading cause of preventable death for kids under age 10. Registering your child for swimming lessons is the first step to safety. Another safe water practice is to have your child wear a lifejacket or personal floatation device (PFD). If the jacket can slip over your child’s chin and ears, it’s too big. Check out these tips from the Canadian Red Cross on getting the right fit. PFDs and lifejackets save lives.

Submitted by Krysta Pigden, Aquatic Program Assistant, Holland Bloorview

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Tuesday, July 19, 2016

How to travel Europe by piggyback

By Louise Kinross 

In April we told you about Kevan Chandler, who was planning a summer trip across Europe with friends who would carry him on their backs when places didn't accommodate his chair. 

The itinerary included hopping over stiles in the British countryside, climbing up 600 rock steps to an Irish monastery, and checking out the underground cemetery in Paris.

Kevan and his friends raised over $26,000 to fund their adventure, and purchased a child carrier modified for Kevan's size. Kevan, who lives in Fort Wayne, Indiana, has spinal muscular atrophy. He updated us in this e-mail interview.

BLOOM: How did the trip go overall?

Kevan Chandler: Oh, it was awesome! Things went smoother than we could've imagined, but it was also balanced with enough challenges and 'wrenches' to keep us on our toes.

BLOOM: What was your favourite part of the trip?

Kevan Chandler: There were so many unbelievable parts to the trip, and I had really special moments with each of the guys who carried me. On one of my favourite days, a few of us went out walking through the fields and woods outside Westerham, in England. 

Our host, Mike, led the way and even carried me for a bit. The countryside was beautiful and it was exactly the sight that I'd seen a thousand times in films or from my van on the highway, and always dreamed of exploring myself. So, this was an especially precious experience to me.

BLOOM: Did you run into any problems while being carried?

Kevan Chandler: The gates at the subway were a bit thin, so we had to watch my knees. And we had to be careful at doorways. When we'd hop a fence in the countryside, the guys had to remember they were a bit top-heavy. There were challenges every day, whether we were in the city or out in the country or staying home. 

Some of them we saw coming, some caught us by surprise, but we just crossed each bridge as we came to them. That was one of the things I considered in choosing the group that came, not that we'd have everything figured out beforehand but that we could be creative and work together to figure things out on the spot.

BLOOM: How did the pack that you were using hold up? Was it comfortable for you and your friend?

Kevan Chandler: The pack worked great. We made more modifications as we went along, but it was a good, sturdy apparatus and did its job well.

BLOOM: What advice would you give others with disability who might want to consider this kind of trip with friends?

Kevan Chandler: It all depends on the person, as to what my advice would be. Generally, I'd say to seriously consider yourself and your team, and decide together how to go about the adventure. A backpack worked for me, but it may be something else for another person. You have to decide first what you want to do, and then go about deciding how you want to do it. Don't be afraid to think outside the box, and if you try something and it's not right, don't be afraid to say no and try something else.

BLOOM: Did anything surprise you about the trip?

Kevan Chandler: Everything surprised me about the trip! I made plans and sorted out details, but emotionally and spiritually, I tried very had to go in with no expectations, just see what happens and enjoy the ride. It was definitely a trip in which you had to roll with the punches, go with the flow, but I think that's the best way to have an experience like this.

BLOOM: How did people respond to you and your situation? Did you meet any other travellers with disabilities?

Kevan Chandler: People were inspired, whether they spoke to us or just watched us from a distance. I think what we were doing was so obvious, they didn't need to know the details to be encouraged by it. I loved being on the subway and seeing someone on the other end of the car glancing at us and seeing a smile come across their face. We made their day without a word, maybe impacted their life more than we know. 

And sure, we had some people who just looked at us with confusion, or they saw us and went on with their day unaffected, but who knows how or if that image stayed with them. We didn't meet any other travellers, per say, who were disabled, but one of our hosts in England had multiple sclerosis, and we did see others in passing who also had various disabilities.

BLOOM: What did your friends who went with you say about the trip? Is it something they'd do again?

Kevan Chandler: They loved it! It was funny to me, because they'd thank me over and over for bringing them on the trip. They were physically carrying me, but they saw it as me taking them to Europe, simply because I invited them. This just shows how great they are and how humble. I think they're all up for another trip.

BLOOM: Did you film the trip so that you can turn it into a documentary? 

Kevan Chandler: Yes, we had a film crew of two and they are now working to whittle that 300-some hours of footage down to a 45-minute documentary. We anticipate a spring 2017 release.

BLOOM: Is the film your next project or are you involved in something else?

Kevan Chandler: I'm pretty hands off with the film. I trust those guys completely with it. For the next few months, I'll be speaking some around the country, and writing a memoir-type novel about the trip. Also, we are working with a few other disabled folks and their families to help them have more freedom to travel as well.

Saturday, July 16, 2016

'Superhumans' ad takes the fragility out of disability

By Louise Kinross

My husband loved this 'We're The Superhumans' ad about the British Paralympics team as well as everyday folks with disability. It was produced by UK broadcaster Channel 4.

I wanted to like it, I really did. But while I got caught up in the Broadway style show and the catchy "Yes I can" cover, something about the "I can do anything" lyrics, when paired with elite athletes as well as regular folks with disabilities, who just happen to be independent, didn't sit right with me. 

Most of the adults and children in the ad have amputations and they've adapted by using a different limb or a prosthesis.

This is how a story in Advertising Age described it: "Paralympians make high jumps, score goals, lift barbells and shoot arrows while everyday folks pump gas, take notes, eat cereals, fly airplanes -- just as easily as their counterparts who happen to have arms and legs would." 

Is that statement true?

Is it "as easy" to do competitive sports and everyday activities with a disability as without one? Isn't that a ludicrous over-generalization? And just how are we defining "disability?"

One of the everyday Superhumans featured is Jessica Cox, the first armless pilot who flies with her feet on the controls (she's an American, by the way).  She's able to fly the plane with her feet because her physical disability is singular -- she was born without arms. What if she also had low or high muscle tone that limited use of her feet, or chronic pain, or an intellectual disability? Would flying be so "easy" then? 

What kind of expectations does this ad set for all people with disabilities, including those with multiple disabilities? The ad suggests that disabled people can do anything AND that they can do it on their own. All of the everyday Superhumans act independently. Most have amputations, and we see how they play a guitar, steer a car, drive a plane, care for a child and pump gas with their feet. 

What about people who have conditions that affect many parts of the body and their ability to function? What about people who require help with bathing, dressing, toileting, moving in their wheelchair or communicating? What about people who require round-the-clock care? How do they fit into this "I can do anything" realm? 

They don't. That's why they don't appear in the ad.

"Being a Superhuman is a state of mind," says the ad's creative director. "It's time to stop focusing on disability and focus on superability instead." 

What? Is a physical environment designed for bipeds and not wheelchairs or walkers a "state of mind" on the part of the disabled person? Are unconscious biases against disabled children detected during implicit association testing in adults a "state of mind" in the children? What about North American health protocols (I imagine they're the same in Europe) that bar children and adults with disabilities from admission to intensive care during a pandemic? 

Disabled people have historically been stereotyped as "less than" human. This ad, pairing some of Britain's finest athletes with everyday disabled folk who are independent, suggests they are Superhuman. 

Will people with disabilities ever be allowed to just be human, in its full spectrum, which includes different degrees of interdependence and dependence over a lifetime?

Thursday, July 7, 2016

'Do what you love'

By Megan Jones

This summer, 17-year-old Jeffrey Beausoleil (centre) will crawl through mud, scale eight-foot walls and jump over fire. The young athlete has become a regular competitor in Spartan races—running competitions in which participants battle their way through grueling obstacle courses.

Unlike most participants, Jeffrey was born without his right hand and leg. Still, the Saint-Jean-sur-Richelieu, Que., resident has completed six Spartan races since he began training last year, including Sprint races (5+ kilometres) and Super races (12+ kilometres). This summer, he’s aiming for the Trifecta—by attempting to complete a Beast race (19+ kilometres) on top of a Sprint and Super.

Here, Jeffrey weighs in on building confidence, dealing with bullies and why teenagers need to see more role models with disabilities.

BLOOM: Have you always been an athlete?

Jeffrey Beausoleil:
I played a lot of sports in my childhood, at school and with friends—handball, soccer, volleyball, badminton. But I never participated anything as intense as a Spartan race.

BLOOM: Right. Most people would find a timed obstacle course extremely challenging. I know I couldn’t do it. What drew you to this kind of challenge?

Jeffrey Beausoleil: There were two things. First, the Shriner’s Hospital for Children approached me and asked me to participate as a way to raise funds for them. I said yes right away because they’ve done so much for me. They taught me how to walk. How to use a pen. How to do everyday tasks. And I’m very grateful for that.

The second motivation was more personal. I’d played enough sports like soccer, and was tired of games with two nets and a ball. So boring. I wanted to try something different, something more challenging. The Spartan race, with its obstacles and its finish line felt like a good idea.

BLOOM: Raising funds is an admirable goal. But do you also get anything out of the races on a personal level?

Jeffrey Beausoleil: When you’re on the course, you cycle through a lot of emotions. Sometimes you feel happy and other times you think to yourself, “Why did I sign up for this?” But when I finish the race I’m always in a great mood. Most of the time I cry. I think having a disability makes the whole thing more emotional for me. I feel a sense of accomplishment. At the end of the races I always think, “I can’t believe I actually did it.”

BLOOM: What sort of adaptations do you make on the course?

Jeffrey Beausoleil: Every time I race I ask family or friends to come with me. You need to use two hands for some obstacles, so I can’t do them alone. During my first race, my best friend Michel helped me with those.

People at Spartan races are very open-minded. I’ve never seen anyone doubt me me at the race. We’re like a big family when we run. Everyone believes in and supports one another.

BLOOM: What about outside of the racecourse? How do people typically treat you when they first see you in public?

Jeffrey Beausoleil: Some people are scared of me. Especially younger people, I can tell. Older people ask me a lot of questions—about how I got my disability or what kinds of tasks I can and can’t do. Curiosity and fear are the typical reactions I get.

BLOOM: Have you ever felt isolated as a result?

Jeffrey Beausoleil: When I was younger I did. My friends could go out and do stuff that I wasn’t able to do. I also used to get bullied a lot. People used to tease me. That left me with really low self-esteem and I was scared to approach new friends.

Then, when I was 12 or 13 I got jumped. I was getting off the bus and a group of guys that was standing nearby made a rude gesture at me. I made the gesture back at them, and they came over to me. They took my prosthesis off and they beat me up.

BLOOM: That’s awful, I’m so sorry.

Jeffrey Beausoleil: It’s okay. Weirdly, after that was when I started to gain confidence.

BLOOM: What changed for you?

Jeffrey Beausoleil: After I was beat up, I had a conversation with my dad about my disability. It lasted, like, two hours. He told me that he loved me. And he reminded me I had much more courage than anyone else he’d met. He also made me realize that I can’t change my body. Even if I cry or dwell, I will still have a disability. So it sank in that I had to accept myself. There will be doubters and haters all our lives. We need to prove them wrong.

BLOOM: Is there anyone else in your life that’s helped you build that self-acceptance?

Jeffrey Beausoleil: These days I feel really well-supported by my family and my friends, and a lot of times my peers don’t even realize that I’m different, physically. I’m sort of the class clown. I’m the only one that makes light of my disability. Sometimes my friend will be like, “Yo, come and help me hold this,” and I’m like, “I can’t…I only have one hand dude.” They forget about my disability because we’re so close. And it’s better to laugh about my disability than to dwell on it. At the end of the day I don’t feel like I’m different. Because I’m not. I’m not different. I’m differently abled.

BLOOM: What advice do you have for teenagers with disabilities who are still trying to gain that self-confidence? A lot of people say 'believe in yourself.' But that’s easier said than done, no?

Jeffrey Beausoleil: The biggest challenge of having a disability is to be able to genuinely believe in yourself. Because you're always thinking about how people perceive you. It’s not physically having a disability that’s hard for me. It’s what people will think: will they accept me? Will they reject me?

I’d tell other kids with disabilities, 'Do what you love.' If someone tells you that you can’t, don’t listen. Do it anyway. If you can try out one thing you’re afraid of, you might be more willing to try another thing that makes you scared. Over time, you’ll become more sure of yourself.

BLOOM: Do you still spend a lot of time worrying about what other people think of you?

Jeffrey Beausoleil: I rarely worry about my disability anymore. I’m more concerned about what people are going to think of my outfits [laughs]. That’s a classic teenager thing, I guess.

Recently I’ve actually been trying to stand out. I mean, my body is already different. I don’t want the rest of me to look like just another person in the crowd. I want to own that difference. Besides, at my school they all wear saggy pants and big t-shirts. I’m going for a classier look.

BLOOM: Have there been any upsides to having a disability?

Jeffrey Beausoleil: Lots! On top of doing sports, I love to create music. I think I got into that partly as a result of my disability. Music helps me get my anxiety and stress out. Throughout my life, working on music and listening to it has helped give me a break from my problems.

My disability gave me a strong imagination, motivation. If I wouldn't have had it, I wouldn't run Spartan races. I wouldn’t have gotten into music. Honestly, I would probably be, like, a gamer. So overall, my disability is an upside. And I’m proud of having it.

BLOOM: What are you hoping to do in the future?

Jeffrey Beausoleil: My biggest goal is to be able to work as a DJ. Music allows me to express my emotions. I can describe how I feel and who I am and I never feel restricted when I’m making music.

If I become famous, having a disability will be a good business shtick for me. You don’t often see artists with disabilities in music. So people will be like, 'Oh my God, look at this guy. He’s a DJ and he only has one hand [laughs].'

But seriously. We need people with disabilities in sports, music, art. It would be inspirational to younger people. Teenagers need to see role models so that they can believe they’ll grow up and do the same things. I know it would have made a difference for me growing up. I think I would have become more confident younger.

Monday, June 27, 2016

What do you say about your disability in a work interview?

By Jessica Geboers

I got my first paid writing gig with this very publication in March 2015. I had finished classes and was visiting my grandparents in California. When I got the email, I couldn’t wait to call home to tell dad that someone was going to pay me to write. I knew that he worried about me finding work.

That’s not to say that I wasn’t worried, but it’s different knowing your parents are concerned about your future. With a college diploma and university degree—both in journalism—I didn’t want to disappoint my parents after spending so much time and money in school.

I graduated from Ryerson University with a Bachelor of Journalism on June 7, 2015 and I’ve been looking for work ever since.

That’s not to say that I haven’t been writing. I’ve been writing and published pretty regularly over the past year on the topic of disability. I’m using my talent and love for writing to spread awareness on what I know best. It’s the dream. But I’m not sure I have the makings to be the kind of freelance writer who can juggle enough work to pay the bills.

So I’ve been on the hunt for a day job
full- or part-time. It’s a tough job market for anyone right now, especially recent grads. Gone are the days when a college diploma or university degree guaranteed our parents a job for life. 

That’s difficult when people are this educated. It's even more challenging when I have to consider my physical and learning disabilities. Unlike a lot of people my age, I can’t really work retail or as a waitress or any other job that requires me to stand for long periods and carry heavy objects.

I can’t hide my cerebral palsy. I can only hope that employers aren’t blinded by assumptions about what I can and can’t do, and give me a chance based on my qualifications. So far, no one has come right out and said anything about my physical disability. But I can sometimes tell they’re surprised or uncomfortable when they first meet me.

My learning disability has been more of an issue at job interviews.

In school, a learning disability is challenging but manageable. We have rights to accommodation
for me this often meant copies of notes and extra time on tests. There are policies and people in place to help level the playing field. You just have to know who and what to ask for. However, at no point during my post-secondary education did anyone explain how to advocate for what you need in the workforce.

Thanks to the Accessibility for Ontarians with Disabilities Act, many employers state that they are equal opportunity employers who don’t discriminate against those with disabilities. Some, including the City of Toronto, have explicit policies and procedures for those who need accommodation during the hiring process. I appreciate and wish that all employers had clear policies for accommodation during job assessments.

Recently I’ve sat a few.

In two cases I was told I was just having an interview, but when I arrived, the employer asked me to take a test. The first time, because I hadn’t been given a heads-up, I felt unsure, uncomfortable and annoyed.

Usually, I need a bit of extra time, a computer, spell check and a calculator. Without them, I knew the test wouldn’t be a fair evaluation of my abilities. But I wasn’t sure I should tell the employer about my learning disability. Should I or shouldn’t I? I didn’t want to be taken out of the running. So I didn't.

The second time I was invited by email to a job interview for an administrative assistant, but when I got there it was an exam. In fact, there was no interview!

I was a bit thrown, but I figured I’d make the best of it. Then I eyed the math section on the test and my “can-do” attitude evaporated.

I’m terrible at math, thanks to my learning disability. My learning disability affects my comprehension, spelling, grammar and math skills. I’ve been able to find ways to manage the first three issues, but I’ve never found a way to wrap my mind around math.

In high school, I only took locally-developed and workplace level math. As a result, there was math on that job test that I’d never seen before. When I got home and told my roommate about the letters and brackets, she told me that was called algebra!

I did ask if I could use a calculator. When they said no, I asked if I’d be able to use a calculator on the job. Oddly, they said that would be fine. Throwing caution to the wind, I came clean and told them about my learning disability. They looked uncomfortable and told me to do my best. Not surprisingly, I didn’t get called back for an interview.

So while my search for a day-job continues, I’ve realized that I have nothing to lose, or be ashamed of, in being upfront about my learning disability. In future, if invited to an interview, I’ll ask if it includes an assessment. If it does, I’ll let people know about my disability before we meet.

From here on out I’ll look for, inquire about and follow any procedures necessary for accommodation during the hiring process.

If an employer has a problem with my disabilities and doesn’t wasn’t to accommodate me, I probably don’t want to work for them anyway.

Friday, June 24, 2016

Worried you're not a 'good enough' parent? Barb can help

By Louise Kinross

Barb Fishbein has always been one of my favourite people at Holland Bloorview. She’s a social worker who works in our child development program and has been at the hospital for 31 years.

BLOOM: Why did you go into social work in children’s rehab?

Barb Fishbein: I adore children and I was running a summer program down at Harbourfront when I was a student and I remember some children coming from Holland Bloorview and being so intrigued and thinking ‘that’s a place I’d really like to work someday.’

BLOOM: What children and parents do you work with here?

Barb Fishbein: I work with children in the child development program and their families. That includes children with cerebral palsy, genetic and metabolic conditions and complex medical needs.

BLOOM: What are common issues that parents come to talk with you about?

Barb Fishbein: Worrying about the future is a huge one—that’s almost across the board: 99.9 per cent of families worry about the future. A lot worry about society’s reactions to their children, what other people will think and how their children will be treated in the community.

Another theme would be feeling the need to do everything possible for their child and searching for therapies and alternative therapies. Sometimes that means travelling in Canada or internationally to get medical care and therapies.

Another theme would be parents feeling exhausted. They want to be the best parents they can be, but often do everything themselves for a long period of time and have difficulty asking for help.

BLOOM: What kind of counselling or support do you provide?

Barb Fishbein: It’s very individual and based on my assessment of the family’s needs. I have a background in psychodynamic therapy and family therapy and am currently taking a grief and bereavement course. My approach is to be supportive and non-judgmental. I look at the family as a system and try to understand the client’s background, beliefs and values and their vision for their child.

I always ask parents to think about whether there is a good balance in their family. It doesn’t have to be a perfect balance all the time—that wouldn’t be realistic—but it can be something to strive for. I have a strong belief that in order for a child to be well, in a holistic way, emotionally and physically, the parent needs to be healthy. So I focus on the parents’ self-care and explore their stresses.

I’m also certified in Triple P parenting so I do a lot of work around behaviour. I have a strong philosophical stance in regards to positive parenting and really looking at children’s strengths and building their self-confidence no matter what their disability is.

Depending on the needs, I can see parents for a four-to-eight session block, and then I may see them at other times over the child’s life. There’s also a practical element to the work I do: as social workers we provide information on government benefits, assist with applications for financial assistance and funding of respite care and make referrals to other community services. We work collaboratively with the interdisciplinary team to make sure families have appropriate equipment and are included in community activities and programs.

BLOOM: What are changes you see in parents as a result of counselling?

Barb Fishbein: I see a confidence in their parenting skills. They may start from a point of striving to be the perfect parent and get to a place of accepting themselves and embracing their strengths. Parents often tell me their children take them to places they’ve never been before.

Some families make significant changes in themselves and their view of the world. I’ve had several families say they previously had a vision of being more financially successful or having a bigger house or more material things, but they’ve found a true richness in their life in their relationships and intimacy with their children. One dad told me yesterday that his son had given him the ‘gift of dependency.’ This is a father who had lost his child.

BLOOM: Why does our culture have such a problem with dependency?

Barb Fishbein: It’s a belief system most parents come in with and it causes a great deal of anxiety. They have dreams for their child’s future based on societal norms about their child going to university, getting a job and moving out.

For some parents, realizing their child may be dependent for a longer period of time helps them to slow down, to stop and reflect on what’s important. They’re able to see the beauty in their children, the gifts they give and the joy in being able to care for another human being in such an intimate way.

Sometimes parents feel a lot of worry about whether they’re going to be a good-enough parent to their child. They feel they can’t possibly do this and they may come to social workers feeling depressed. We work on helping them to recognize the skills they’re developing: navigating the hospital system, learning nursing or therapy interventions they might have to do at home and becoming an advocate.

BLOOM: What is most challenging about your job?

Barb Fishbein:
Not having enough time in the day to do what I’d like to do.

BLOOM: We know parents of kids with disabilities are at greater risk for mental health problems. What can parents do to build their resilience?

Barb Fishbein: I absolutely believe in resilience. Building resilience is really important and I tell parents early on that they have to be strong over the long run if they want to be good parents. So they have to take care of themselves.

I talk about an emotional bank account and the need to make deposits on a regular basis. We put money in our bank account, but we need to make deposits in our emotional account. That includes physical health and wellbeing.

A lot of parents, in the beginning, can’t imagine how they can carve out any time for themselves. Some parents can barely take a shower because their child needs constant care and supervision. We need to help them get to the point where they can take that risk to believe that taking care of themselves is not a selfish act. Often parents feel they’re being selfish.

BLOOM: What are ways parents can take care of themselves?

Barb Fishbein: You start small, like taking a short walk to get out of the house, or meeting a friend for coffee, or going to the gym. Eating well is important and so is getting enough rest.

BLOOM: But isn’t that challenging because a lot of our kids have sleep problems?

Barb Fishbein: Yes, sleep disorders are a huge challenge. It could be the child has a seizure disorder, or pain, or the child may get their days and nights mixed up neurologically.

I encourage parents to speak to their developmental pediatrician, clinic nurse or nurse practitioner, neurologist and other specialists and to keep asking what else that can be done to help their child get a good night’s sleep.

Asking for help, and getting respite care, is also important. So we look at their circle of support and which family or friends may be able to come in. Beyond that we encourage families to access in-home and out-of-home respite. That’s one of the hardest things for families to consider, especially when their children are young. I really feel for parents, but at the same time I encourage them to take small steps.

It could be taking their child to a respite place like Safe Haven for the day. They can spend a few hours with their child and then go and have a coffee and come back until they’re comfortable leaving the child for a longer period of time.

BLOOM: Do you recommend other supports for families?

Barb Fishbein: Some of our social workers are doing mindfulness meditation with our parents. Some parents may be dealing with issues separate from their child that they need further counselling about outside of Holland Bloorview.

Our families come in all forms: married, single, divorced, gay, lesbian, transgender. They may speak another language or have different socioeconomic backgrounds. I encourage parents to attend our Parent Talk groups that cover different topics and introduce them to other parents. There are also a number of groups for parents of children with disabilities in the community.

BLOOM: Have your thoughts about families of children with disabilities evolved over the years?

Barb Fishbein: I always believed in the resilience of people, but sometimes I felt that some parents might lose their way and not be able to get to a place of happiness or balance. I now have a really strong belief that the majority of people, with the right support and a willingness to open their hearts and minds and let go of old ways of thinking and self-judgment, can find a deeper happiness than they ever imagined.

Parents need to be able to take advantage of services and supports and groups that are out there, and we also have a responsibility to continually evaluate our services. As service providers, we need to become more flexible with our hours so that families can more easily get transportation and fit appointments into their other commitments and work schedules.

BLOOM: How have we changed as an organization over the three decades you’ve been here?

Barb Fishbein:
Family-centred care has come a long way: family involvement in the organization at every level and really listening to families and respecting them. We’ve talked about it for many years, but now we’re really making it happen across the organization and within teams and in every way we communicate with parents. We’re also doing more research into areas that families and children say are important.

BLOOM: If you could make a change in the health or social supports offered to families of children with disabilities, what would it be?

Barb Fishbein: I think we need to make services flexible to meet family needs and give families more control and autonomy in creating supports that meet their individual lifestyles. So making services portable—having nursing care that goes into nursery schools. Making inclusion possible for all children, whether they want to go to the park or to a movie, or to a Holland Bloorview swim program or shopping.

BLOOM: Many years ago you were off work being treated for cancer. How did that experience inform your work?

Barb Fishbein: It helped me to understand in a much more personal way that random things can happen. So I truly understand that feeling of suddenly becoming ill or experiencing trauma and that life is like that. I really appreciated the care I received. I had incredible care from the point of people at hospital reception to nursing and medical staff and was treated with so much compassion and respect. I truly believe in patient- and family-centred care and when I was sick I saw it in action.

I really value life and I think I tend to act on things with more confidence now when I feel they’re right. I don’t hesitate to do things that I know are in the best interests of families. And despite the fact that something happened to me that was out of my control, I found a way to move forward in a positive way and appreciate my life in a deeper way. I’ve always loved the work I do, but I love it even more now.

BLOOM: What advice would you give parents?

Barb Fishbein:
We’re having a lot of conversations with parents about the importance of play and leading a normal life. I think parents need to be cognizant of over-programming, over-medicalizing and over-therapizing.

They need to look at the amount of time their child is spending in therapy. If your child was a typical child, would you want them spending that much time in a rehab centre or hospital?

Can you let go of some of that pressure on your child and yourself and be able to be with your child and appreciate them for who they are?

I also strongly belief in the emotional life of a child and when we focus so much on physical rehab, which of course is important, we may forget to pay attention to the child’s emotional wellbeing—including how to nurture a feeling of acceptance and belonging.

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Wednesday, June 22, 2016

A problem focus misses 'the opportunity to get kids to thrive'

By Louise Kinross

Dr. Evdokia Anagnostou is a neurologist and clinician scientist in the Autism Research Centre at Holland Bloorview. She is also a Canada Research Chair in translational therapeutics in autism. We talked about her role in clinic and conducting research.

BLOOM: Why did you get into working as a clinician scientist with children with autism?

Evdokia Anagnostou: It started as a puzzle. When I was training as a resident in neurology, I was used to seeing a child and, based on the signs and symptoms, knowing which part of the brain was involved. If the child couldn’t move their right arm, I knew it was a part of the brain on the left side that was responsible. For most problems in child neurology we can identify the location, and sometimes the nature of the difficulty, based on signs and symptoms, before ordering tests. But when it came to autism, there was no way of figuring out what was happening in the child’s brain based on signs and symptoms. It was curiosity that got me into it.

BLOOM: What does a current day look like for you at work?

Evdokia Anagnostou: My current schedule is 20 per cent clinical—so I see 10 to 12 kids in clinic one day a week—and four days or 80 per cent is research. On a typical research day I’m seeing kids who are coming to be part of research protocols, writing and reviewing grants, writing papers and analyzing results, and meeting with granting agencies, government organizations and senior administration.

BLOOM: What is most rewarding about your job?

Evdokia Anagnostou: I think I have the best of both worlds. I get to work really hard to invest in the future of children with neurodevelopmental disorders by doing research, but I also get to contribute to the lives of kids right now by keeping my clinic day active. So I feel like I’m contributing on a day-to-day basis and to changing the future.

BLOOM: What is the greatest challenge?

Evdokia Anagnostou: Managing a balance between clinical and research time. Let’s say I see a child during clinic day on Monday, but that kid gets into trouble on a Thursday, which is a research day. I can’t say ‘I’m sorry, I can’t do anything until my clinic day.’ We need to meet the needs of the kids as they arise.

Another would be building a large research group based on research funding, and making sure you don’t lose that funding. You have a whole group of 15 to 20 people depending on you for their job. There’s constant grant writing and running after funding agencies to maintain or increase our funding.

Another challenge is figuring out how to do the most you can with the resources you have. On the clinical side, there are what we think should be standard services that are unobtainable given the envelopes of money we have from the various ministries. So figuring out how to meet the most needs with the money we have, and being creative about it.

Finally, it's challenging trying to develop therapies without fully understanding the biology of the differences we see with autism spectrum disorders

BLOOM: Which of your research projects is most promising?

Evdokia Anagnostou:
Our most promising project is with the Province of Ontario Neurodevelopmental Disabilities Network (POND). That’s because the network admits that we don’t understand how a variety of neurodevelopmental disorders like autism, ADHD and intellectual disability are different in terms of their biology. So POND takes the approach that we are going to understand first the biology by understanding the genetics and brain structure and function, irrespective of what diagnosis the child has. And then develop treatments for that. It’s most promising because sometimes we label kids for a variety of reasons in ways that don’t necessarily reflect what is happening in their brain and therefore our treatments tend to fail.

BLOOM: Have your thoughts about autism shifted over the years?

Evdokia Anagnostou:
I started thinking of autism as a neurological disorder. I still think it’s a group of neurological disorders, but right now I’m much more aware of it as a difference than a disorder. I’m aware of all of the distress and dysfunction it can produce in kids and families, but I’m also aware of the strengths it can produce in certain areas and the value people with autism see in their difference.

BLOOM: How could we better support parents of kids with autism?

Evdokia Anagnostou: I think this is an area where we have done particularly poorly. The needs of parents of kids with autism and related problems vary from learning skills to help their children to learning how to see the strengths and beauty in the difference to getting support from other parents and understanding that their situations are not unique and there is strength in numbers.

We need to help parents learn that they have the ability to advocate and change the environment for their kids with special needs. And parents need to partner with their kids as they grow up to produce better outcomes that are desired by the kids themselves—instead of what we think is important for the kids.

BLOOM: What advice would you give yourself now, if you were just starting out?

Evdokia Anagnostou: I would give myself a couple of pieces of advice. One would be that although it’s very important that we understand where the dysfunction and distress comes from, a strengths-based approach is something you need to be engaged in from the beginning of your research. Otherwise, you learn the hard way that if you only see the negatives in the difference you don’t appreciate the strengths and the value that people see in their difference and therefore your approach for intervention is limited.

The other piece would be to be prepared for the long haul—meaning that it takes a long time to actually see concrete results. If you’re going to be a clinician scientist in this field you need to be able to delay gratification. It’s extremely rewarding and you will make differences in kids’ lives, even if particular days look more distressing. And families and kids are your partners in this journey.

BLOOM: What have you learned from the families you work with?

Evdokia Anagnostou:
I’ve been in awe of their resilience. I have learned to take a strengths-based approach and to actually look at the things the families and kids do well and work on those.

Initially, when you’re a young investigator, you see the distress and you just want to fix it. It’s a more na├»ve approach, to see all the things people are failing at and to work on those. I haven’t changed in the sense that I still believe you have to go after the things that produce distress, but that’s not the only way to improve quality of life, and, in fact, it’s a very narrow way.

If you only work on the things people are weak at, they never become great at them. But if you work on things kids are good at so that they develop a skill set where in some areas they struggle and in some areas they thrive, that produces a balance. The areas where the kids are thriving are more important for their quality of life. If you focus on problems, you miss the opportunity to get kids to thrive.

BLOOM: If you could change one thing about your job, what would it be?

Evdokia Anagnostou:
More than 24 hours in a day.

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