Friday, January 23, 2015

How many red flags on mental health do we need?

By Louise Kinross

Very high stress levels in 17 per cent of Canadians who care for a child or adult with a health condition or disability was flagged as a significant concern in a report on mental health indicators by the Mental Health Commission of Canada (see page 8) yesterday.

There isn't anything new or surprising about this. In fact, I'm surprised that the number is so low.

There's more than a decade of research showing parents of kids with disabilities have higher rates of stress and depression than parents raising typical kids, as well as poorer physical health (See the bottom of page 4 of this 2013 Australian report for a review on the mental health studies). One study found the level of chronic stress experienced by mothers of youth and adults with autism mirrors that seen in combat soldiers.

The worry is felt by siblings, too. A 2014 study in Pediatrics found that siblings of children with disabilities were almost three times more likely to have parent-reported emotional and behavioural problems. "Growing up with a child with a disability is a risk factor for mental-health issues," lead investigator Dr. Anthony Goudie told BLOOM.

When a group of Australian researchers were trying to come up with a practical resource to support mental wellbeing in parents of kids with disabilities, they could only find one document online targeted to this population. 

They've since released Wellbeing for Parents and Carers, a resource for parents caring for children and adults with disabilities. It was put together based on interviews with parents.

They identify these ways to help promote mental wellbeing: 

Practise self-care.
Ask yourself 'How am I doing?'
Ask for help.
Try not to be too hard on yourself.
Recognize your achievements.
Plan time for yourself.
Take a break from caring.
Build supportive relationships.
Talk about how you feel.

I know some of these strategies will sound impossible to our readers, especially "practise self-care, plan time for yourself and take a break from caring."

"Ask for help" is also a really tough one, because as parents of kids with disabilities we don't want to create the perception that what we do is hard (lest people interpret that to mean we love our kids any less, or that our kids somehow "are less").

I'm tired of reading study after study, year after year, about how parents like us are at risk. We have ENOUGH evidence. In addition to the scientific studies, there are regular news stories about parents who reach breaking point.

The report on Canadian mental-health indicators notes that "caregivers are an invaluable asset to formal health care and social service systems in supporting individuals with physical and/or mental health conditions."

They got that right.

So why isn't there more action on giving parents the respite and supports they need to better take care of themselves? So that they don't become mentally or physically ill?

I know a number of families whose children require the level of care received in an ICU at home. Yet they receive a weekly allotment of nursing care that gives them about six hours a night. Do most of us cope well on six hours of sleep a night? 

When I saw the news story about high stress in Canadian caregivers being flagged as a mental-health concern I felt a rush of excitement. But then I looked back over the years and years of studies related to parenting kids with disabilities. I remember reporting on one of them by our then chief of medical staff back in 2005. And I don't expect any change.

Thursday, January 22, 2015

A brother's story fuels autism researcher

By Louise Kinross

“I sit here and think ‘How did I get so lucky?’” says Susan Day Fragiadakis, a research assistant in Holland Bloorview’s Autism Research Centre.

Susan recruits and assesses children and youth and their families for a study that aims to link genetic changes with specific types of autism and other neurodevelopmental disorders like Down syndrome.

Susan is part of a Province of Ontario Neurodevelopmental Disorders (POND) Network study that follows over 300 children and young adults.

“The goal is to understand how genes and biology affect the brain and behaviour in autism and other neurodevevelopmental disorders,” Susan says. That includes attention deficit hyperactivity disorder, obsessive compulsive disorder and intellectual disability. Participants give a blood sample for genetic analysis; have a brain scan; do interviews and questionnaires; and choose whether they wish to participate in a medication trial.

Susan’s role includes conducting detailed parent interviews that track “everything you could imagine about a child’s history back to birth: sensory issues, anxiety, sleep, eating, medical history.”

Her passion for understanding autism stems from her own family’s experience with incorrect information when her brother Rick was diagnosed in the early 1960s (see Susan top right in photo, with her siblings). 

“My mother was told that Rick’s autism was the result of poor parenting,” Susan says. “The implication was that somehow she had damaged my brother and the only treatment offered was psychotherapy for her. When she pointed out that she had two typically developing kids in the waiting room, the response was ‘but they’re girls.’ The way my mother and father dealt with it was to be an open book—to share our story to move understanding along. My mother wanted to educate people to help the next generation of families.”

Susan’s work on the POND study feels like coming full circle from her family’s experience of being blamed for her brother's autism, she says. “I used to worry about the lack of quality research into autism and now I get to work in a lab led by a child neurologist, a psychologist and an engineer that’s doing quality research that’s going to advance our knowledge and potential interventions.”

Susan has fond memories of her childhood. “When we lived in a small town my sister and I would take Rick on adventures that we didn’t fully explain to my parents. My older sister was the boss and I was the little sister. Rick would go cliff-climbing with us or ride his bike with us out into the country or go to the race track with us.”

Rick never attended school. “In some towns we lived in he went to programs run in church basements by 'the Association for the Mentally Retarded.' But the rest of the time he was with my mother and he liked to help her with cooking and cleaning and doing the laundry.”

In his early teens Rick went to live in an institution. “I feel very guilty about it,” Susan says. “I’ve never talked to my sister about it but I’ve always felt that some of it was that my parents thought it would be the best thing for my sister and me. That’s what they were told. Rick got very sick when he first went. There was a long period of time where we were told that to help him adjust we weren’t allowed to see him. That was hard. I think I blocked out a lot of things I didn’t want to remember.”

As a teenager, Susan worked with other children with disabilities. “My mother volunteered me to babysit for free for a family that had a child with autism. I think I knew I had skills working with individuals with disabilities and their families.”

That led her to study psychology at university. Ironically, Susan did an eight-month clinical master’s placement at the same institution her brother had once lived in. “It was eye-opening,” Susan says. “There’s a reason they were closed. They’re not the ideal setting for most people.”

Rick was one of the first people transitioned back to the community. He now lives in a group home and visits Susan and other family members every two to three weeks. At 60, he loves horse-back riding, sawing wood and fancy restaurants.

After graduating Susan spent decades educating people about autism, most recently at the Geneva Centre for Autism. “What people remember most from my talks is the examples I’ve given of my brother. As a family, we always talk about how Rick has educated two generations of workers. When I did public speaking there was always someone in the audience who knew Rick. One time I was talking about strengths and how just because you can’t talk and didn’t go to school doesn’t mean you don’t have strengths, and a woman in the audience started crying. It turned out she’d done her master’s research on my brother and had interviewed my parents. Rick’s had a huge impact on a whole lot of people’s lives.”

In recruiting families into the POND study, Susan feels she’s enabling youth and families to continue educating professionals. “I was consenting a kid into our study and one of the questions is ‘Why do you want to be in this study?’ This boy said ‘I want to be in the study because I can talk and I can tell you things that those other kids at my school who can’t talk aren’t able to. I’m speaking for them.’”

Growing up, Susan’s family participated in lots of research studies but didn’t typically hear back on the outcome. “I’m proud of the fact that we have annual science days for our POND families and the principal investigators come and explain how they’re using the data. The families are giving us their time, their information, and opening up a lot of stuff for us. We have a responsibility to respect them.”’

Susan believes her experience as a sibling to a brother with autism and as a parent to her own children helps her draw out the information she needs from parents.

She’s excited that the study is leading to practical interventions. For example, scientist Azadeh Kushki is developing an anxiety meter “that gives youth a visual prompt to changes in their heart rate that signal they need to do a calming strategy. This helps because kids with autism have difficulty identifying their symptoms of anxiety. It’s truly a collaborative effort.”

Most kids enjoy participating in the POND study, Susan says. “They’re with people who appreciate them and see their uniqueness as an interesting thing, as opposed to something to be fixed. We meet some of the most amazing kids who daily teach me something new.”

The study is funded through the Ontario Brain Institute until 2018. “It’s such a robust, rich source of information,” Susan says. “I hope we’ll be able to follow some of these kids and their families longitudinally.”

Wednesday, January 21, 2015

Slip slidin' away

By Louise Kinross


The Canadian winter is treacherous for youth who use wheelchairs or walkers finds a Holland Bloorview study published in Disability and Rehabilitation last month.

Researchers interviewed 12 youth aged 15 to 22 who use walkers and power or manual wheelchairs about the challenges they face getting around in winter.

Their comments paint a stark picture:

“In the slush and snow my walker seizes up” explains one participant, who notes that she falls regularly and has broken her leg “more than once.”

From a power wheelchair user: “With public transit sometimes their ramps don’t work…because it’s cold so the hydraulics don’t work…So even if the bus comes, the ramp doesn’t work. So you wait for the next bus. I have times where I waited for four buses.”

Snow-blocked pathways and sidewalks force participants onto the road. One was hit by a car at an intersection when she had to drive on the road because the sidewalk wasn’t plowed.

Most youth can't wear gloves because it impedes their ability to use their walker or wheelchair—so frostbite is a common problem.

One recounted getting stuck on patches of ice and having to wait to ask someone for assistance or call the police. Another was choked when her coat became caught under a wheel.

These extreme conditions led many youth to fear and avoid going out, which made them feel lonely and isolated.

When they did go out, they had to depend more on parents or others to ensure they were safe, whereas in the summer they could go independently.

Participants suggested strategies to help others with mobility devices cope with winter. These included having equipment more frequently maintained to keep it in top working order; paying more attention to conditions of paths and sidewalks and avoiding problem areas; asking a pedestrian about whether a route was hazardous; giving yourself more time to get somewhere; and putting flags and lights on wheelchairs to improve their visibility. To prevent isolation and depression, some participants kept busy in activities like adapted winter or indoor sports. Girls were less likely to participate in adapted sports than boys.

Because heavy winter coats were hard for youth to put on and limited their movement, they suggested wearing layers with a thinner winter coat. Some wore anti-slip boots.

Researchers found that youth with walkers had more serious challenges in the winter than those with wheelchairs, due to smaller wheels on their devices.

Clinicians must ensure youth get proper training on maneuvering their wheelchair or walker, and enlisting mentors may be helpful, researchers said. Expanding clinic times should be considered to recognize the extra time it takes to get to appointments and to leave enough time to assess clients for signs of depression. A winter survival guide could include tips for spotting hazards at street crossings, maintaining wheelchairs, dressing appropriately and recognizing signs of frostbite, as well as a list of adapted local activities.   

Tuesday, January 20, 2015

Acceptance: What does it mean to you?

There is a very cool group called 3E Love Network that promotes acceptance of disability.

Today is their International Day of Acceptance.

The group was founded by siblings Stevie and Annie Hopkins, two young adults with spinal muscular atrophy.

Their message: "tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals, who loves life, and who will not be without a voice in society. You are not living disabled, you are living."

Read Annie Hopkins' powerful story here. Annie grew up facing discrimination. She had a ton of spunk. "In college, she wanted to join a sorority, so she forced more than 40 houses on campus to build ramps so she could participate in rush week," according to the 3E Love website.

Annie created a wheelchair heart symbol to unify people of all abilities and spark conversation that would change attitudes. She and her brother Stevie started a company to spread the message. Unexpectedly, Annie died in 2009 due to a complication from a simple medical procedure. Stevie took the company forward.

To me, acceptance means respect for a person's intrinsic self-worth, their value as a human being, regardless of anything they do.

What does acceptance mean to you?

Monday, January 19, 2015

BLOOM media roundup

Girl advocate for disabled American Girl doll to write book Kickstarter

Last year Eva Shang, then 10 (above), got almost 150,000 people to sign a petition asking American Girl to release a doll with a disability. The company hasn't. BOO! So Eva, who has a form of muscular dystrophy, is moving on to write a book about a middle-schooler with a disability. You can also hear Eva and her older sister Melissa calling for more visibility for girls with disability in the media in this TEDx talk: Why girls with disabilities matter. Rock on sister!

Ode on a stethoscope The New Yorker

How poems and medicine fit together in medical journals. Great quote from a seasoned doctor at the end: 'When you get in the twilight of your career, relationships, connections—with patients, and connections with those who help you care for patients—matter as much as or more than the chart, the medical record, the lab tests,' LaCombe said.

Girl invents Hello Kitty IV backpack for chemo and transfusions The Huffington Post

Kylie Symonds, 11, invents a wearable, portable IV machine for kids receiving chemotherapy or transfusions so they don't have to bother pulling cumbersome IV poles around. 

Disabled girl types with nose, opens online store to sell apples

A young woman in Yuncheng, Shanxi province has sold over 350 kilograms of apples from her village over the Internet, using her nose to type and her chin to manipulate the mouse.

We wouldn't accept actors 'blacking up' so why accept 'cripping up?' The Guardian

'When it comes to race, we believe it is wrong for the story of someone from a minority to be depicted by a member of the dominant group for mass entertainment. But we don’t grant disabled people the same right to self-representation.'

Harsh critics in public spaces New York Times Motherlode blog

Blogger David Perry writes about how parents who take kids with disability out in public face constant judgment and prejudice that is isolating.  

Trapped in his body for 12 years, man breaks free NPR

Martin Pistorius was a healthy 12-year-old until meningitis took his ability to move and speak. Doctors told his parents he was 'a vegetable' but years later Martin regained the ability to communicate and said he had been aware and understanding.

Teen invents snap-on underwear for people with disabilities The Huffington Post

A girl who had to wear a fixator on her leg which meant she couldn't easily slip her legs into undies designs cool underwear that you put on with snaps.

Friday, January 16, 2015

Nick knew how to take the pain away

By Louise Kinross

When I first got to know Nick Joachimides (above centre), it was in his role as a nurse educator at Holland Bloorview.

Nick was part of a research study to address a growing body of literature that suggested pain was under-recognized and under-treated in children with disabilities. The study aimed to shift the focus from treating pain in our kids to preventing it.

This was of great personal interest to me because my son had just had a major hip and knee surgery that wasn't successful: the hardware put in his hip had pulled out of the bone, taking a chip with it, he was in unbearable pain, and he had to have the identical surgery a second time to correct it.

I was an emotional wreck when my son came to Holland Bloorview in a body cast following this second surgery.

But I had one huge advantage. Nick worked on the unit my son was on.

Nick was convinced that by proactively treating pain with medication before it spun out of control, it could be kept at bay. He was implementing a number of best practices that included pain assessment tools to track pain; anticipating and treating pain prior to therapy or procedures; making pain management the responsibility of the entire rehab team; using distraction and relaxation techniques; and educating families.

Nick was caring, calm and unflappable.

When my son's cast had to be cut off unexpectedly because his wounds continued to ooze, Nick was part of the team that supported my son in the treatment room pictured (in the photo above he is with a different client).

Children need to feel safe in their hospital rooms, so painful or anxiety-provoking procedures are done in a separate room at Holland Bloorview.

I expected cutting the cast off would be traumatic for my son. I was also concerned that it might result in the hardware pulling out of his hip again. "He can't take another surgery," I remember telling Nick, which was really my way of saying "I can't take another surgery!"

I was astounded when I came to the treatment room and found my son lying on a bed, completely relaxed, grinning. Nick and a number of nurses and child-life specialists were circled around him, as was the orthotist who was cutting off the cast.

Fibre-optic lights were draped over my son, blinking peacefully, and his favourite Star Wars movie played on a large-screen TV above. I hadn't asked for any of these things. Because staff had gotten to know my son, they knew he adored Star Wars. They had taken the time to think about what might soothe him and take his mind off the medical procedure.

There was only one person visibly stressed in the room: me. One of the child-life specialists suggested that it might be better for everyone if I went back to my office and they called me when the procedure was over. Ha ha! She was right.

When the cast was removed they found my son had pressure sores that needed to be treated. Nick is an expert in wound care and he always seemed to be able to change my son's dressings with a minimum of pain.

Something I learned when my son became an inpatient here is that nurses are the heart of the care we provide. They're the ones who are with you and your child for the most amount of time every day and night. They're the ones who problem-solve with you when your child's pain is bad. They're the ones who make handmade heating packs to soothe your child's aches. They're the ones who are there when everyone "leaves" for the weekend. They're the ones who give you a hug when you start to cry. They're the ones who make being in hospital bearable.

Two years ago I got to interview Nick about how he got into children's rehab. I was moved by a story he told about the deep connection he made with one inpatient boy on our complex-continuing care unit. "They want to have fun, they want to be treated like children," he said. "They need people here who can demedicalize the environment." One of the ways he did that was by concocting practical jokes with this boy that they'd play on other nurses. "We'd both laugh when we pulled off a good one," he recalled. 

In the last few years Nick moved out of frontline nursing and worked with people in and out of Holland Bloorview to make it a leader in patient safety and infection control. 

When I heard he was going to a new position at Bridgepoint Active Health Care I was so sad. Holland Bloorview and Nick went together. But then I learned he was returning to clinical care, as an advanced practice practitioner for wound care. I could picture the immense trust he would engender in the patients and families he was going to, the way he would work to take away their pain and put them at ease. And it totally made sense.

"Do you remember a nurse called Nick?" I asked my husband.

"Not really," he said.

"Come on," I said. "He helped Ben with his pressure sores."

"Oh him! Yes, he was very gentle and kind."

Tuesday, January 13, 2015

'How poor are they who have not patience'

By Louise Kinross


It's a quality that doesn't rank high in our competitive, consuming, instant-gratification culture. We want things, and we want them fast.

Some families reminded me recently of the importance of patience in raising children with disabilities.

The first was Pia Pearce, mother to Kevin Pearce, an American snowboarder expected to win gold at the 2010 Olympics until a crash nearly killed him, severely injuring his brain. Kevin was hospitalized and had to relearn everything—to swallow, walk and talk. He was unable to return to competition. It’s common for parents of children with traumatic brain injury to mourn the child they knew pre-injury.

“I didn’t see any value in going there,” Pia told me in an interview. Because of her experience raising her son David, who has Down syndrome, and two boys with dyslexia, “I had learned, over the course of time, a lot about patience and acceptance. Because I’ve had so much experience with accepting differences, my focus is on acceptance.”

That stuck with me and I wondered how it could apply to my experience raising my son with a rare genetic condition.

Last week I interviewed Joyce Scott, the twin sister of Judith Scott, a world-renowned fibre sculptor who's described in this New York Times piece as a 
complex and brilliant artist and person.

Judith—who had Down syndrome, was deaf and was institutionalized for over 30 years—didn’t find her gift till her mid 40s, when Joyce brought her to San Francisco and became her guardian. Joyce enrolled Judith in Creative Growth, a community art centre for adults with disabilities. At first Judith didn’t show any aptitude or interest, Joyce said. “It’s a place where they don’t teach art, they provide materials and allow people to explore them. Judy was there for about two years and she wasn’t liking drawing or painting or ceramics. We thought ‘Maybe this isn’t the right place for her.’”

One day Judith was sitting at a table where an artist was using textiles and “she took some of the materials—the threads and yarns—and found some sticks and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded,” Joyce recalled. “Once she started fibre sculpture, you could not get her to stop. Sometimes her fingers would bleed because she worked so many hours and so hard on it.”

Judith’s work, which combines fibre and found objects like an umbrella, branch, bicycle wheels and plastic tubing, has been shown in museums around the globe. Ten years after her death, “Bound and Unbound” is a 60-piece exhibit at the Brooklyn Museum in New York until the end of March.

Judith’s story made me think about how impatient we typically are—as families and professionals—when exposing children or adults with disabilities to activities or work. How often do we encourage a person to try something like art—on a daily basis, for two years, as Judith was—when the person doesn't show any affinity for it? Rarely. We're more likely to assume the person isn't capable and insist that they move on. I think Judith's story is exceptional because without her unhurried time at Creative Growth, her talent would have remained hidden.

“I feel so strongly that people who may look different or appear to be somehow ‘less than’ or who are labelled ‘less than,’ have great giftedness and great potential,” Joyce said. “I see Judy as a kind of a model for that. Who would have thought that someone labelled as profoundly retarded and deaf and institutionalized for most of her life had this amazing greatness within her as an artist? What she needed was an opportunity, a place, and respect.”

I think the key word is respect. Because Joyce respected her sister, she continued to support her participation in the art program even when Judith didn’t appear to be making gains. When you respect someone, you give them time. You give them latitude. You believe they have worth. You value them as they are. 

I saw the benefits of patience in my own life recently. My son has been working at two high-school work placements. He has significant disabilities and a lot of growing and maturing to do. So this has not been without bumps. I reached out by email to the owner of one of the businesses to ask how things were going. 

In his response, the owner began by describing our son as an awesome individual. He went on to say that they had seen slow but real improvements in our son's work, behaviour, focus and attention. He addressed one of our son's challenges and his need to improve. He finished off by saying that our son was an asset to the team. 

I read this message to my husband and we teared up. We agreed that we had never had a message like this about our son before. Usually the feedback we receive focuses on the negative. And that invariably leads us to question our own weaknesses as parents.

What I took from this business owner's message was that my son was being given time to develop and improve at his work. They were being extraordinarily patient with him. Despite his disabilities, they saw his value. This made my husband and I feel more hopeful about our son and more motivated to support him and stay positive about his experiences.

It made me wonder why we don't talk more about the benefits of patience in parenting kids with disabilities and the intrinsic self-worth of children (distinct from ability). Is it possible that we're missing something in our focus on goals and outcomes and hurrying people along in their development? Are we too quick to judge people incapable? And resign them to the margins? Maybe we could all benefit from more patience.

The photo is of an unnamed sculpture from Judith Scott's Bound and Unbound exhibit at the Brooklyn Museum. Please click on it to see the full image. The headline above is a quote from Shakespeare's Othello. Look for a more in-depth interview with Joyce Scott in the winter issue of BLOOM next month.