Monday, October 20, 2014

BLOOM media roundup

Looking for a great read? Check out the disability and parenting stories we've collected in the last week. Let us know if we missed a good one! Louise

To Siri, With Love The New York Times
How a boy with autism becomes 'Best-Friends-Forever' with Apple's Siri.

Why doctors need stories The New York Times
'Data are important, of course, but numbers sometimes imply an order to what is happening that can be misleading.'

Where are all the disabled characters in children's books? The Guardian
'After four years of blogging, I’ve yet to read a book with a physically disabled lead character.' 

A mother's story of loss Today's Parent
A mom chooses not to terminate her son, diagnosed prenatally with a life-threatening genetic condition. He dies in her arms moments after birth.

Raw Beauty project empowers disabled women
Photo exhibit of women with disabilities, initiated by a model who says the industry rejected her after a car accident left her with quadriplegia.

Humans of New York Online photo series
'Before he was born, so much of my life was about moving forward. I was always looking toward the next house, the next car, the next job. Having a child with special needs really made me slow down and examine my definition of success.' 

Hollywood has it wrong: I'm a teenager with an illness, and it's not glamorous at all Washington Post 'I’ve spent quite a bit of time in emergency rooms and hospitals across the country, and none of the patients I’ve seen were anything like the characters in the hospital portrayed in the pilot episode of 'Red Band Society,' a new Fox show premiering Wednesday.

All technology is assistive
'All people, over the course of their lives, traffic between times of relative independence and dependence. So the questions cultures ask, the technologies they invent, and how those technologies broadcast a message about their usersweakness and strength, agency and passivityare critical ones.

Down syndrome is not just cute Aljazeera America
David Perry's son is super-cute. But his value as a person is not based on his cuteness. What matters, Perry writes, is our shared humanity.

An autistic artist and her therapy cat,
Stunning photos of a five-year-old girl and her cat.
Kelly and Sue's story: Learning disability hate crime Youtube video from Mencap
In the last two years there were 124,000 disability hate crimes in the UK. Only 1% resulted in prosecutions. Kelly is harassed daily. Police tell her to just ignore it. Would you?

Slow codeWhat do you think of 'slow code?' BLOOM
Here Dr. Brian Goldman describes a "slow code" or "Hollywood code," when doctors are slow to respond to a "code blue" that signals a patient in cardiac arrest because they believe the intervention is futile.

Why not a slow code? American Medical Association Journal of Ethics
A hematology-oncology doctor and a philosophy scholar look at the ethical minefield of slow codes and provide an alternative to aggressive resuscitation or 'doing nothing.'

And don't forget to read the latest issue of BLOOM!


Research neglects alarming obesity rates in disabled children

By Louise Kinross

Children with disabilities are two to four times more likely to be overweight, and two to four times less likely to be physically active, than their peers, according to Dr. James Rimmer, a professor in the School of Health Professions and research chair in Health Promotion and Rehabilitation Sciences at the University of Alabama.

Despite these alarming numbers, the bulk of U.S. government funding goes to research into weight management for typical children, Dr. Rimmer said.

Dr. Rimmer was speaking today at a consensus-building workshop at Holland Bloorview in Toronto bringing together international experts and families to look at research to address weight management in children with disabilities.

Dr. Rimmer shared a number of American studies that showed dramatically higher rates of obesity in children and teens with physical and intellectual disabilities and lower rates of participation in school gym class and recess and extracurricular activities. “There is a tendency to not take these children out for physical education or recess and to involve them in more sedentary activities,” Dr. Rimmer said. In addition, after-school programs and playgrounds in the community may be inaccessible.

We have to teach society that there are ways to adapt programs and include kids with physical and cognitive disabilities,” Dr. Rimmer said.

In addition to being socially isolated, youth with disabilities and obesity are more likely to have a host of secondary conditions such as high cholesterol, asthma, pressure ulcers, fatigue, depression, low self-esteem, high blood pressure and liver and gallbladder disease.

My mission in life has been something called inclusion,” said Dr. Rimmer, noting that he has an adult daughter with autism who has been excluded from preschool and playdates since she was three. “Doctors need to understand that there are many associated consequences of obesity.”

Dr. Rimmer said that some tools that screen for weight issues don't identify problems in kids with certain kinds of disabilities. For example, using body mass index, which is a ratio of height to weight, doesn't work with children with paralysis.

Factors influencing the association between disability and obesity, he said, include: increased dietary intake; less physical activity; decreased fat-free body mass; lower resting metabolic rate, which is the rate at which you expend energy while at rest; and poorer heart function.

Despite the prevalence of obesity in children with disabilities, a disproportionate amount of U.S. government funding goes to research into weight management for children in general, Dr. Rimmer said.

He referenced a 2010 chart from the National Institutes of Health showing 116 federally-funded studies on obesity intervention for the general child population, compared to only eight studies targeted to children with disabilities. Dr. Rimmer noted that research on the general population typically excluded children with chronic medical conditions and genetic syndromes and those who don't walk or take medication. 

Dr. Rimmer said we need to learn from weight management programs that have been effective for the typical child population and adapt them for children with disabilities. “We need a systematic framework for developing guidelines, recommendations and adaptations.”

Dr. Rimmer spoke of a model that included convening an expert panel to assess whether existing guidelines target the disability population and creating focus groups where parents and youth with disabilities evaluate proposed adaptations. “We always find multiple holes in our recommendations after we go through the family focus groups,” he said.

Dr. Rimmer said it's generally not that difficult or costly to adapt programs, and that two common areas that need attention are training instructors on how to work with kids with disability and developing disability-friendly parent education materials.

Overall, adaptations should consider the built environment, such as the need for a ramp or access from a vehicle to a field; appropriate equipment; inclusion of all children in every game, sport or activity in and outside the class; and instruction for staff, for example, in how to communicate with a child with autism.

Dr. Rimmer said obesity is associated with carbohydrates and “our rates of obesity can come down demographically if can get refined carbohydrates, such as high fructose corn syrup, out of our diets.”

Inclusion is a right, he said, not a privilege.

Friday, October 17, 2014

What do you think about 'slow code?'

Here Dr. Brian Goldman describes a "slow code" or "Hollywood code," when doctors are slow to respond to a "code blue" that signals a patient in cardiac arrest because they believe the intervention is futile. 

"Slow code" is an example of the hospital slang Dr. Goldman, an emergency room doctor and CBC broadcaster, writes about in The Secret Language of Doctors.

I posted this on our Parent Voices at Holland Bloorview Facebook group yesterday and there was a discussion about the ethics of not being upfront with families that a full code won't be performed. 

Doctors are obliged to do a full code unless the patient or next of kin say it's okay not to. Sometimes families insist on full intervention even when doctors recommend against it, which is what causes the dilemma for professionals.

I tweeted this question to Dr. Goldman: 

-- how often is slow code called w kids w complex medical needs/and or developmental ?

He replied: 

no data just anecdotal observations. It happens in that group of patients.

Check out the discussion on Parent Voices and leave a comment here.

An artist is born

By Kevin Vieira
Whether sitting at the piano, strumming a guitar or drumming with whatever he can get his hands on, my son Joseph (above) makes music.

Joseph is seven years old and has cerebral palsy. Joseph is also non-verbal (so far), yet he has a voice: a computer-generated voice that is produced in response to the words he selects or types into his computer.

This technology that has become the greatest source of liberation for our son—liberating his ideas which are as uncensored, funny, sometimes hurtful, deep and poetic as any child’s.

This is where the story begins. In finding his voice, Joseph also found opportunity, friendship and music.

Paul Alcamo, Joseph’s senior kindergarten teacher at the Bloorview School Authority, recalls meeting Joseph at rehearsals for a student song CD he was producing, when Joseph was just in junior kindergarten.

“A very articulate, voice-device-using boy named Joseph told me that he couldn’t sing,” Paul remembers. “I was temporarily stumped to find a way to get him into the songs and encouraged him to use his voice in his way. The accuracy of the notes didn’t matter as much as he made a joyful sound with us. That didn’t sit well with this very soulful and intelligent boy. For close to six months that also stayed with me in the back of my mind.

“Joe was then placed in my class for his senior kindergarten year…At one point early in the year I decided to save some of the writings of this witty and profound child. As well, the nagging feeling that I had to find a way for his voice to make it into music stayed with me.”

Joseph’s teacher Paul approached his friend Adrian Moody, a producer at the Ashley Ingram School of Music, for help. And, for reasons I will never understand, Adrian agreed to meet with Joseph and our family.

The meeting with Adrian (AJ) at the studio was unforgettable. AJ was very warm and welcoming, treating us to a tour of the studio that was complete with gold records on the walls and photos of some of the biggest pop stars in the world who had recorded there. AJ and Joseph hit it off immediately. Both fed off the other’s enthusiasm and sense of humour, both completely fascinated by the other.

We finally entered the studio where AJ and Joseph would record together. I apologized for not having a clear musical idea or even a complete song and handed over Joseph’s lyrics for his song That Thing. AJ was immediately excited and optimistic that something special was about to happen, and proceeded to transfer Joseph’s lyrics, as spoken by his computer, onto one of the studio computers. Then he asked Joseph for more lyrics.

“Gimme something,” AJ said, and Joseph responded, typing new lyrics on the spot onto his computer. With AJ’s support and encouragement, Joseph delivered.

After all the lyrics were recorded, AJ demonstrated how he would manipulate the digital voice recording from Joseph’s computer, by making pitch changes and varying the length of his words to emulate a singing voice. It was of course a transformative moment.

There was lots of laughter, shouting and high-fives. Joseph's emotions ranged from disbelief to joy to immense pride and validation.

It was a moment where everything changed. I had never heard or imagined anything like it. In an instant, a world of possibilities opened up. In an instant a wall of limitation came crashing down. AJ Moody and Paul Alcamo had changed the world for Joseph and many like him who are sure to follow.

This is how AJ describes it:

“I had been trained to treat everyone in the studio as an artist, and I was determined to approach this project with the same level of care and professionalism. When Joey and his family arrived, I knew that I wasn’t just treating someone like a star: Joey is a star. He was engaged, energetic and inspiring to work with. Using technology and software we often take for granted in the studio, I was able to work with Joey in creating a song that gave him his musical voice. I had no idea of the impact it would have on him, his family, his peers, or myself.

“Joey taught me that expression is not about what we see or what we expect, but truly about being free to express what lies directly in our hearts. In fact, the result was so powerful to me, I quit my job and founded a nonprofit organization—called Music Without Barriers—to help Joey and people all around the world find their voice, access music no matter the barriers, and give everyone the chance to shine.”

Joseph presented his song That Thing at the Breaking the ICE (Independence Community and Empowerment) conference in Toronto in 2012. At just five years of age he introduced it by saying he “wrote it to get rich” and was “still waiting,” to uproarious laughter. When his song played, it brought the roof down.

What Joseph, AJ and Paul accomplished together changed the lives of many of the people in that conference hall that day. That Thing has that kind of power because it’s not just a great piece of work for alternate communication users; it’s a great song, period. And, at the heart of it is a young boy with a big voice, big ideas, and lots of swagger.

Joseph may just represent a new beginning in what’s possible—and a new attitude in what’s acceptable—for this generation and future generations of alternate communication users.

The song That Thing (below) is available on
iTunes. Check out AJ's Music Without Barriers

That Thing

By Joseph Spahn-Vieira

That thing, that thing, that thing,

Don't be scared . . .

That's right I said it, I said it,

Don’t, don’t doubt,

That thing that thing that thing that thing,

Don't be scared,

don't be scared, it's better to love than to like . . .

I worked with you and you worked with me, so don't be scared,

The hearts fall like rain into my lunchbox, I take them out and give them to you . . .

it's a little bit of this, and a little bit of that,

That, that, that, that thing . . .

Don’t be scared,

don’t don’t doubt,

Don’t be scared,

don’t don’t doubt,

That thing that thing that thing

Don’t be scared,

That's right I said it,

Don’t, don’t doubt.

Tuesday, October 14, 2014

Blogger tracks Toronto's disability-friendly spots

By Louise Kinross

Silvia Guido blogs about Toronto restaurants, bars and music venues that meet her 30-item checklist for accessibility.
The physiotherapist, who launched AccessTO in April 2013, just posted her 122nd review. She's supported by a team of volunteers.
The blog grew out of complaints Silvia heard from patients about the limited number of places they could visit in Toronto.
"I'd talk about going to a new restaurant and my clients would say 'Good for you, but I probably couldn't get in there.' A number of my patients have moved out of Toronto because we have such a long way to go." 
Silvia only writes about Toronto spots that meet her criteria, she says. "It's either accessible to me or it's not. If it's not, I don't want to write about it. I want to keep the blog positive."
Silvia measures entrance ways, table heights and door widths; checks floor surfaces, turning spaces and how easy the place is to navigate in a chair, scooter or walker; and looks for automatic door, hand-dryer, sink and toilet features in washrooms.
"Individual washrooms, rather than stalls, are best," she says. "They need to have grab bars, a floating sink and automatic features." She writes about whether they have a fold-out table for changing children, but hasn't yet seen any washrooms equipped with a change table for an adult.
Silvia also writes about nearby accessible subway stations, parking spots or street parking.
The most common barrier she finds is lack of a level entrance way. "We've had restaurants that think they're accessible but they have a six-inch curb in front of the door."
Silvia follows up on recommendations from AccessTO readers and also does walkabouts in neighbourhoods to scout new places. "Right now I can't find anything in St. Clair Ave. W. and it's frustrating," she says. Her blog has categories for 26 Toronto neighbourhoods.
Silvia's volunteers include a friend who uses a wheelchair and some former University of Toronto occupational therapy students. "I'd love to find more volunteers with a variety of disabilities, to make it more personal," she says. You can contact her at
Silvia generally posts once or twice a week. She'd love to hear about your favourite family-friendly restaurants.

Sunday, October 12, 2014

The big picture

By Sandra Joy Stein

The note announcing picture day came home in my son’s school folder.

“Wow,” I thought. “Look how far we’ve come.” The fact that my son attends school at all is quite an accomplishment. It wasn’t until three years after the onset of his autoimmune encephalitiswhere the immune system attacks the brainthat we received medical clearance for him to participate in an educational program outside of hospital or home. After considerable work to get all the necessary systems in place, for the first time since his illness he was now attending a barrier-free neighbourhood school, accompanied at all times by a nurse.

I was occasionally thrown by how immediately his entry to school brought many ordinary experiences to our extraordinary lives. He had homework; I received emails from the PTA; I signed permission slips for fieldtrips. And now, it was picture day.

I picked out an outfit, lamenting that on that particular day I did not have the requisite time (or patience) to engage him in the choice. I sent a back-up outfit, should vomit or drool sully my original selection. As the wheelchair lift was raising him onto the bus, I made a request to his nurse. I had recently seen class pictures in which a group of currently able-bodied children stood clustered in the centre of bleachers with the one child who uses a wheelchair positioned to the side of the bleachers, separate from the class. 

I find these images to be unnecessarily isolating to children who work tirelessly to participate in a world that has not been designed for them. I suggested that if the whole class were posed in such a way, with my son off to the side, to please ask for an alternative arrangement. She agreed to raise the issue should it come up.

Mid-day I received a text message from the nurse informing me that for the class picture they took my son out of his wheelchair and his teacher supported his head and torso so he could sit with the rest of the children. That made sense to me since they do take him out of the chair to sit with the other children regularly and his head and trunk control have improved enough over time that with a little input from an adult, he can sit in some of the classroom chairs safely. In the class picture, he would be right beside his peers, a full member of the classroom community.

But then came a second text message: “Solo pic was in his wheelchair but they’re gonna photoshop his headrest so you can’t see it.” I felt a lump in my throat. I had asked that he not be isolated from his peers in the class photo, not that his individual shot omit all traces of his illness. Who thought we would not want to see the headrest of the chair that has become the means for our son to move around in the world? I thought to write back immediately saying: “He uses a wheelchair. It’s fine. Keep it in the pic.” But I often find that taking time after my initial visceral reactions leads to better outcomes. So I waited for my husband to come home to discuss it with him.

My son loves having his picture taken. At times, when his body is behaving in ways that seem beyond his control, I hold up my cell phone to snap a selfie of the two of us. Upon seeing our image on my phone he often focuses, calms, and mugs for the camera. It’s a phenomenon I cannot begin to understand, so I don’t try. I have several pictures of the two of us, looking right at the camera, smiling together as if someone just told us to say cheese. When I post these pictures on Facebook, I comment that they are from the “If you didn’t know you wouldn’t know” files because there is not a visible trace of the three years my son has been battling his disease. 

I am admittedly more likely to post these pictures to Facebook than the ones where the visual effects of the disease—the deviated gaze, the open, drooling mouth, the protruding tongue, the asymmetrical facial expressions, the blank stares—are visible. I have justified this tendency by looking at the postings of friends’ kids whose childhoods have thus far not included disabling diseases. We all post what we believe to be the most attractive shots of our kids, the ones where they look happy and loving and impish and proud…right?

But the thought of any part of his current state being photoshopped out of a professionally taken picture disturbed me. I told my husband the story and he had the same reaction. Our son used to walk on his own. He does not now. He may or may not walk again someday. In the meantime, there is no need to photoshop any aspect of his current state out of visual existence. 

We wouldn’t want the photographers to airbrush in a smile that his facial muscles didn’t authentically produce or paint the missing teeth back into his mouth. In fact, we wouldn’t want them to change a thing about his picture, as it is a snapshot of his incredible life as it is today. There is nothing about the physical imagery of his journey that brings us shame. Quite the opposite, he is a powerful testament to resilience in every image we capture of him with or without the wheelchair, the drool, and the varying facial asymmetries. He is our son and we stand in awe of his beauty.

I texted the nurse that night asking if she happened to get the photographer’s contact information so we could communicate that we do not want any photoshopping of our son’s picture. She informed me that they would be back to the school the following day and she would let them know.

The next day I received a text from her: “Spoke to photographer. He is leaving headrest in.”

I noted how the attention I was able to give to this issue served as yet another indication of just how far we had come. I was not at this moment suctioning the trache he used to have. I wasn’t watching the alarming ICU monitor while a medical team ran in to resuscitate him. I was not making an impossibly hard decision about medications or surgeries. I was asking that the wheelchair headrest captured in my son’s school picture not be photoshopped out, the health equivalent of a first-world problem.

Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.

Wednesday, October 8, 2014

People with intellectual disability grow old alone: Study

By Louise Kinross

On Monday I got home just as D’Arcy and Ben were walking up the 26 steps to our house.

Ben, who had just got off his bus, was wearing his black and brown Tim Horton’s uniform—including a button-down shirt and visor—and D’Arcy was waiting for him as he climbed each stair. They got to the landing and Ben sped up with his characteristically lopsided gait, the result of a surgery that left one leg shorter than the other.

I was flooded with happiness.

I knew how lucky we were that Ben had two co-op placements in his last year of high school, and the human and transportation supports to make them happen.

But the moment was bittersweet. I quickly reminded myself that these supports will evaporate next year. When Ben leaves high school, he'll experience what families of children with significant disabilities refer to as "falling off the cliff."

And the findings of a large, longitudinal Irish study released last week paint a grim picture for people with intellectual disability decades later, in their middle to old age.

The research—the first in the world—compares the physical and mental health of 753 people with intellectual disability over the age of 40 with the general population over a three year period.

I was particularly interested in the findings on relationships in the study, which is called the Intellectual Disability Supplement to The Irish Longitudinal Study on Aging (you can download it here).

In contrast with the typical aging population, researchers found older people with intellectual disability are generally alone—single, without children, and living in a different area than other family, which makes seeing family difficult.

Three-quarters say paid staff are their most important “social partners”—read “friends.” Just over half have friends outside their home. For respondents with severe intellectual disability, more than two-thirds have no contact with family. Researchers found lack of friends and reliance on staff was just as problematic for older people living in community group homes as it was for those in larger, more traditional institutions. Respondents said they were most likely to confide in paid staff, well ahead of siblings and friends.

“Our findings show that movement to the community does not necessarily equate with community integration,” says principal investigator Mary McCarron of Trinity College Dublin, echoing a theme in this earlier BLOOM post. “Unless the community is truly organized and resourced to support aging people with intellectual disability…their experience may instead be one of social isolation, loneliness and new forms of institutionalization,” Professor McCarron said.

Almost two-thirds of older people with intellectual disability in the Irish study have trouble getting into the community, or don’t go out at all—with “need someone’s assistance” as the main reason they're stuck inside.

Researchers note that “living in the community” for older people with intellectual disability bears little resemblance to life in the same neighbourhood for the general aging population.

While older people with intellectual disabilities had significantly lower rates of high blood pressure and heart attack than the regular population, a majority were overweight, engaged in little physical activity and had osteoporosis.

Compared to a 33 per cent employment rate for the general aging population, only 6.5 per cent of older people with intellectual disability were employed at the three-year mark of the study. About 80 per cent attended a day program.

At the beginning of the study, 32 per cent reported never having attended school. At the three-year mark, over 80 per cent said they had trouble reading, writing, doing simple math and using money. More than 60 per cent could not read their own name.

The researchers note that for the first time in history, people with intellectual disability are growing old in considerable numbers.

I'm grateful that such a large, rigorous study is shining a light on this marginalized population.

But its results cast a shadow on my hopes for Ben's future.

Watching Ben climb the stairs with his dad on Monday I was happy that he had a co-op placement at Tim Horton’s, that he was wearing the standard button-down shirt despite his sensory aversion, and that son and dad were so pleased to see each other.

Ben prefers it when his dad waits at the end of the bus ride. Sometimes when I pick him up he’ll pretend to snap his fingers in a gesture of “darn.”

“I know,” I’ll say. “I’m your second favourite.”

I recognize we’re incredibly lucky that we have one more year for Ben in the school system, and that he is doing co-op five days a week: two days at Tim Horton’s and three days at Variety Village, the adapted gym. He has an assistant who goes with him. This allows D’Arcy and I to work regular hours.  

But at 21 our children lose the learning stimulation, routine and social connections of school, with nothing to replace them. Hiring workers to support your adult child can be extremely expensive. And you may be starting at ground zero to organize activities that are meaningful for your child.

We have a small group of workers, family and friends who met last weekend as a follow-up to a life-plan day we did with Ben, where we looked at his goals for the future and how we can support him. I hope we can come up with a mix of activities for him when he graduates that may include part-time work and a day program. People like my son deserve a better future.

I'm not convinced that the Irish study will result in richer lives for the seniors studied. I don't think the average person is concerned with, or willing to invest in, the happiness of people with disabilities. How can we change that?