Friday, October 24, 2014

Wednesday, October 22, 2014

Tuesday, October 21, 2014

Pinpoints of light




















By Louise Kinross

In The Boy in the Moon, author Ian Brown uses the term 'pinpoints of light' to describe how moments of grace and love could relieve the dark parts of raising his son with disabilities.

I had a few of those moments recently. One occurred yesterday when I was at a research conference. Someone I didn't recognize came up to me, smiled and said: "Are you Ben's mom?"

"Why yes I am," I said, unable to place this person.

He introduced himself as one of the lead people at one of Ben's co-ops. I knew his name immediately but had never met him in person.

"Last year I used to see you dropping Ben off," he continued. "It's been great having Ben with us and he's developed quite a fan-base."

That was a pinpoint of light, unexpected, warm and gratifying.

One of the two co-op placements Ben has this year resulted because I reached out on Facebook to someone I didn't know and asked if he'd be willing to consider my son.

He made a commitmentover Facebookand followed through. There aren't many people like this in the world, particularly in business.

Another place where the light came through.

Last year I drove Ben to his co-op three days a week because the school board wouldn't provide transportation (even though he is eligible for transportation to school). It was a significant distance from us, and resulted in me being late into work on those days.

This year his principal went to bat for us and we got transportation. It's not perfect. It didn't show up the first day, and it now involves two "milk-routes" that keep Ben on the bus for an hour each way. I started off fighting that, because we had already provided medical documentation that Ben couldn't be on the bus for an inordinate amount of time. But then I noticed that Ben seemed to be managing it okay. So I let it go.

The milk route means an early pickup that gets all of us up earlier in the morning. The bonus? I get in to work earlier, minus the stress of driving like Mario Andretti to get the co-op drop-off in first.

As I was coming home today, thinking about this post, a fear crossed my mind: writing about it might jinx my luck. Maybe I should keep it to myself, I thought. That's what happens when you're used to operating in generally dark and stormy weather. It's hard to trust that the light will break through again. Or, it's easy to dismiss the lightour great luck this year with Ben's placementsby reminding myself that next year we fall into a black hole when Ben ages out of pediatric services. Why get hopeful and complacent now when everything will turn dark again? Why be happy with the things we have set up this year when many will evaporate next year?

Sure enough, Ben got off the van this afternoon and told me that he had a bad morning and refused to work. He was concerned that I wouldn't be happy. This after a generally glowing work report from yesterday.

Who am I kidding? I thought. Why did I even think about writing this post? In my world you only have to wait a few hours and the sky will turn cloudy again.

I guess that's why we need to document and savour the little bits of light, whenever they come.

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 Today.com
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 Medium.com
'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, boredpanda.com
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: 

21h
-- 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.