First armless pilot: 'My feet were more efficient and faster'

BBC World Service has this fabulous interview with Jessica Cox, a 33-year-old Arizona woman who is the world's first licensed pilot with no arms. 

She talks about "feeling lighter, freer and more empowered than I'd ever felt in my whole life" the first day of Grade 8, when she left the prosthetic arms she'd worn for 11 years at home. "It was my statement of independence and my statement of authenticity. My feet were more efficient and faster."

Jessica said her prosthetics were "hot, heavy and cumbersome, and weighed close to 10 lbs." In addition to flying, Jessica also drives, plays the piano and has her black belt in Tae Kwon Do. "I use my feet the way other people use their hands."

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How to work with your child's teacher and school

By Alison Morse

Parents of children with special-education needs face extra challenges in helping their kids succeed at school.

Sometimes we assume that a teacher will automatically know how to teach our child. But every child is different. It’s important for the school to focus on your child’s individual needs—not just what they assume based on a label.

These strategies will help you support your child by taking an organized approach to your relationship with the teacher and school.

Know your child

-Get educated on your child’s strengths and needs so you can speak about them

-Understand your child’s diagnosis and how it may impact learning

-Collects articles and information that may help school staff understand your child.

Understand the school system

-Learn about special education services and programs—and your role—by attending information workshops at your child’s school, the school board or community agencies. The school board’s website is another good source of information.

Develop and maintain a relationship with the teacher

The classroom teacher is a very important person in your child’s life. Maintaining an open and honest relationship means that you can quickly raise concerns and work together to solve them. The following tips are intended to help you with this relationship with the school.

Communicate effectively

Talking about our children is emotional and sometimes we focus on what we want to say without really listening to the other person. Remember to:

-Pay attention and listen to the speaker

-Ask questions about words and procedures you don’t understand

-Repeat information to make sure you understood what was said correctly

-Speak clearly and present facts in a logical order

-Ask for a break or to reschedule the meeting if you become emotional.

Learn to problem-solve and negotiate

The school doesn’t have unlimited resources and there’s usually more than one way to solve a problem. As a parent, you want to show that you will work with the teacher to find a mutually beneficial solution. Try to:

-Brainstorm new ideas without judgment

-Evaluate each idea and identify consequences

-Select best solutions and plan details for how they will be implemented

-Evaluate results and decide whether to continue or to try another option

-Recognize the resource limitations faced by school staff

-Look for areas of agreement and compromise.

Share successes

A healthy relationship with the teacher means that you don’t just approach when there's a problem. You need to celebrate successes and let the teacher know that you recognize their skills and expertise. To do this you can:

-Share good news about your child with school staff

-Thank the teacher for their efforts and be specific in your comments

-Attend school social events and volunteer to help in the classroom or on trips

-Let the school principal and others know when things go well in the classroom.

Preparation and follow-up

Working with the teacher and the school will include meetings, phone calls and e-mails. It’s important to organize the information you have about your child and prepare for meetings. Here are some tips:

Prepare for case conferences and meetings

-Make sure you understand the purpose of the meeting

-Find out who will be attending the meeting and why they will be there

-Take someone with you to help you by taking notes or speaking on your behalf

-Be prepared to share information about your child

Keep records and notes

-Make notes of key discussions from phone calls and at meetings

-Record the names and positions of people involved

-Ask for copies of meeting minutes and other documents

-Keep your notes and records organized in a binder or filing system

Follow-up on phone calls and meetings

-Before the end of the call or meeting, reconfirm next steps, actions and future meetings

-Send a thank-you note with a summary of your expectations

-Complete all the tasks that were identified for your action (e.g. make appointments, provide information, etc.)

-Monitor changes and track progress for future meetings.

Find help in the community

Advocating for your child can feel overwhelming. It's important to remember that you're not alone and many other parents have been through similar situations. As a parent, your knowledge and skills will grow over time. In the meantime:

-Seek out information about your child’s needs and strategies that may help

-Attend workshops or meetings that will provide information or support

-Contact community agencies that provide support to families

-Connect with other families of a child with similar issues.

Alison Morse is a parent of a young adult with cerebral palsy and developmental disability. Alison has been a volunteer special education Advisory Committee (SEAC) member representing Easter Seals since 1992. As the provincial coordinator for special education at Easter Seals Ontario, Alison manages SEAC recruitment, training and support and develops information resources for families. Recently Alison started the blog Easter Seals Kids at School. It already has 50 articles about what parents can do to support students. This post Advocacy: How to deal with concerns at school outlines the chain of command to follow when you're experiencing problems. The tips above were collected from parents and professionals across Ontario. 

Photo above by Jodi Ravn. Holland Bloorview staff will remember the Ravn family, which includes Eric, 11, Alex, 8, and Nicholas, 5. You may remember this BLOOM story written by the boys' father Lloyd.

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Why are we so hung up on walking?

By Louise Kinross

Why is a skateboard cool, but a walker not so much?

Why is walking at the top of those child development charts, and crawling at the bottom? And why is the option of wheeling in a chair entirely absent?

Holland Bloorview scientist Barbara Gibson just gave a fascinating talk on how we may limit the way children move because of the social value we place on walking. Her book Rehabilitation: A Post-critical Approach was just released.

“Rehab and other health professions focus on ‘normal,’” Barbara said. “They think about normal function, normal bodies, and, in children’s rehabilitation, normal development. Our interventions encourage uniformity in body structure and how bodies move,” she said, which may unintentionally reinforce cultural values about walking as the preferred way of getting around.

Barbara talked about a number of factors that influence attitudes about mobility.

Walking is seen as an endpoint in child development. Crawling is tolerated in infants, but is disparaged in the older child who “has not grown up.” Even human evolution depicts our ascension from crawling on the ground to being upright. Young children are taught that there are specific times and places where they must be still or move in certain ways. Literature and other forms of media and culture associate a person’s moral character with standing upright. Someone who is stooped is often viewed as “suspicious, dishonest and unreliable,” Barbara noted.

Children internalize these social meanings about the 'right' and 'wrong' way to move. As a result, kids who can’t get around in typical ways are often teased or isolated. 

Disabled kids who prefer to crawl because it's more efficient may feel they need to walk as a way of fitting in. “The child who crawls has to navigate the social rules by which normalcy is judged,” Barbara said.

Being able to walk conveys “membership with other walkers,” Barbara said. “There are issues of identity.” For example, “I’m a walker” a young girl with a disability told Barbara.

Barbara suggested that it would be helpful for rehab professionals to view “difference as the default human condition.” Then we could drop our culture’s baggage about movement and creatively assess all options when a child has a disability.

Should we broaden advocacy for different ways of moving in the world? For example, “Should public spaces be designed for crawlers?” Barbara asked.

Barbara suggested we need to consider whether rehab reinforces cultural norms about movement or transforms them.

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Tommy Hilfiger launches adapted children's clothing

By Louise Kinross

Great news for parents.

Runway of Dreams has partnered with Tommy Hilfiger to produce the first mainstream line of clothing with adaptations for youth with disabilities built in.

The clothing, for children up to size 20, can be ordered online and includes a pair of US$39.50 boy's jeans with these alterations: adjustable waistband; magnet system and velcro on fly, instead of zipper for easy open and close; modified fly that looks like typical fly; and loop button system inside hem to adjust length.

A boy's button-down shirt is opened and closed with concealed magnets in the front and on the cuffs that remove the need for fiddly buttoning.

Girls' t-shirts and dresses have a centre-opening at the back that uses magnets for easy access.

Go to Runway of Dreams to watch their video about how the line came to be.

Photo by Richard Cormin

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Coping while captured (in hospital!)

Jadine Baldwin is a 15-year-old student who's been hospitalized at Holland Bloorview since she had surgery to straighten her spine back in November.  

Jadine has written this acrostic poem to share tips with other youth who may be scheduled to come to Holland Bloorview for rehab. An acrostic poem uses the letters in a word to begin each line of the poem. Enjoy!   

Coping while captured (in hospital!)

By Jadine Baldwin

Come into the hospital with a smile.

Open up to other people who are having the same difficulties as you are.

Practise breathing when you are in pain.

Introduce yourself to one new person everyday.

Nothing is better than home-cooked meals (get parents to bring in some).

Get involved in recreation activities!

Watch your favourite movies to pass time.

Have friends and family visit you.

Invest in lots and lots of your favourite snacks.

Listen to some good music.

Encouragement is key.

Catch up on local news.

Advocate for yourself and others.

Physio has to happen, whether you like it or not.

Take pictures and make memories.

Use your time here. Even if temporary… make the best of it.

Read books.

Explore your hidden talents.

Dream BIG!

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Hospitalized: A poem by Jadine Baldwin

Jadine Baldwin (with her mother) is a 15-year-old student who's been hospitalized at Holland Bloorview since she had surgery to straighten her spine way back in November. "I'm not going to sugarcoat it," she says. "This has been the most painful surgery I've ever had." 

Jadine says she uses writing as an outlet for her emotions. "I write when I'm happy, sad, angry or hungry."

It's also a great distraction from pain, she says. "When you're in pain you want to find stuff that makes you feel better, even if just temporarily. Writing makes me forget that I have pain for the moment." 

Jadine's favourite writer is young adult author John Green, who wrote the bestseller The Fault in Our Stars. "He's astonishing," she says. "He doesn't mess around." This is Jadine's poem about what it feels like to be a teenager going through rehab in hospital. Stay tuned for more of Jadine's work.

Hospitalized: A poem by Jadine Baldwin

Being in the hospital as a teen one minute feels like forever

Being in the hospital as a teen pain demands to be felt

Being in the hospital as a teen you understand that life is too short to be unhappy

Being in the hospital as a teen means that physio is not a choice

Being in the hospital as a teen opens your eyes to who your real friends and family are

Being in the hospital as a teen makes you appreciate the little things in life

Being in the hospital as a teen introduces you to so many people who want to see you succeed

Being in the hospital as a teens helps you make memories and friends to last a lifetime

Being in the hospital as a teen where food is the only flaw is not too bad

Holland Bloorview is the place for healing (in any shape or form) at its best.

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Stevie Wonder calls for inclusion amid reminders of dark reality

By Louise Kinross

This is a grim piece today. It's a reminder of the ugly, sometimes violent, discrimination that exists in our communities against those with disabilities.

Social media lit up a few days ago when Stevie Wonder demanded inclusion at the Grammys. "We need to make every single thing accessible to every person with a disability," he said.  

Everyone got behind him, celebrities, media pundits. Meanwhile, these were the dark realities flashing across my screen.

First I read this story about a 13-year-old Winnipeg boy with an intellectual disability who was attacked by men and thrown in a dumpster where he languished for hours in the freezing cold before someone heard his cries. "You don't jump a kid in daylight and nobody see it," his father told The Toronto Star. "My son can't identify them. But somebody can...Be my son's voice, somebody."

Indeed. Can you imagine what it took for these parents to contact the media after having their son thrown in the garbage? Who will speak for this boy?

Then there's the 26-year-old man with autism and developmental disability who's been living in an Ontario hospital for two years at a cost of $1,250 a day. He isn't able to care for himself and there's no housing for him in the community. He had to be put under to have 26 teeth removed, many of them in painful abscesses that caused a fever. No one noticed that his teeth had rotted. This man is one of three with autism living in the psychiatric unit of the hospital.

South of us students with behaviour and emotional problems at a Boston school were restrained "more than 200 times last year, the result of a 'systemic failure' by staff and senior administrators that led to repeated, improper uses of excessive force, according to a state report," reports The Boston Globe. The students, in Grades 4 to 8, were "slapped, tackled and yanked out of chairs for refusing to stand." More than 40 times students were restrained face down on the ground. Big surprise? Staff often didn't inform parents.

And here's a story about an acclaimed mathematics professor who moved his family from Belgium to New Zealand in 2011 because he heard it was a great place to raise a child with autism. After winning a prestigious New Zealand research award, he's returning to Belgium because his 13-year-old son with autism has been denied residency. He doesn't have "an acceptable standard of health" the family was told.

The stories didn't stop there. As I scrolled through Facebook and Twitter they kept popping up. But I didn't have the heart to include anymore.

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A novel drawn from light and loss

By Louise Kinross

In 2011, cartoonist Tom Hart was living an idyllic life in Gainesville, Florida. While his wife Leela, also a cartoonist, worked on a book, he spent time with his daughter Rosalie, not yet 2—bike-riding, visiting ducks in the pond, tracking the moon, painting watercolours on the back-porch.

Then Rosalie died suddenly and unexpectedly.

Tom did what he'd always done: he began writing, furiously, and then drawing, about it. His graphic memoir Rosalie Lightning was released last month.

BLOOM: How soon after Rosalie died did you start writing about it?

Tom Hart: I wrote to stay sane pretty instantly. When I wasn’t walking around the neighbourhood with my wife, or sort of lying down on the grass or in bed, I was writing mostly. In some cases it was just recording what was happening. More often it was trying to understand something and stave off despair.

We did a bit of travelling to get out of town—because town was so hurtful—so I kept the writing and the notebook going. After about five weeks I had a binder of notes. I felt it was time to stop, partly because I was repeating and partly because what happened at the end of the book was that this little girl came up to me, and that was a sign that I should stop writing.

I took some time off and then began the process of turning it into a narrative, and that took about three-and-a-half years.

BLOOM: What role did drawing and writing play in grieving for Rosalie?

Tom Hart: I’ve always used comics—this mixture of words and pictures and cartoons and boxes as a way to navigate the emotional world. Even as a child my first memory at age seven or eight is of tracing Peanuts—Charlie Brown. I later realized that I was really drawn to the emotional content: people were screaming and fighting and there was lots of punching. It was a way I learned to comprehend the larger emotional world. So unconsciously, throughout most of my life, I’ve always taken whatever I’m feeling and tried to wrestle with it on the page.

BLOOM: How did drawing help you focus on all of the details you wanted to remember about Rosalie?

Tom Hart: I wound up wanting to focus on how lively she was, and how the time up till she died was so fun and so magical. I wanted to recap it and recount it for people. It seemed strange, when I looked back at it, to want to draw all that stuff. In a way I think I was trying to summon her back. And again, since I have drawn cartoon characters for so long, it seemed like the most direct way to try to capture her spirit somehow, or to connect to her spirit.

BLOOM: What’s the main theme of the book?

Tom Hart: It’s trying to show a person’s mind as they work from a state of complete shock to some sort of comfort or integration with their new experience. Since reality has been so uprooted, it’s trying to find signs from outside of how to exist in this new reality, of how to work within a new world.

BLOOM: It seemed like the book was alternating back and forth between the beauty and pain that comes from the mystery of life. So on the one hand, we see Rosalie’s reactions of wonder to things like the 'big moon' or how acorns contain what will be a tree. But on the other, we feel your unbearable loss when she dies.

Tom Hart: It’s nice that you came away with that. I did the book very intuitively. Had I thought through what you just said ahead of time, it would have been a good structuring device. The world is big and full of joy and sorrow and bouncing or oscillating between the two is what I was trying to capture. In doing the book I really just followed my nose.

BLOOM: I think when a child has a disability, or an illness, or dies, it’s hard for parents to accept the random nature of it. In your book you go over the events immediately prior to Rosalie’s death. It seems like you’re trying to decipher the 'why' or the meaning of it. Was there a cause? Should you have anticipated it? Can you talk about that?

Tom Hart: The world is full of random, horrible circumstances and there’s not a lot of justice in the world. There’s not a larger justice in the world. To be honest, in my case I think I was able to do this book because it was so random. I think if she had had some prolonged illness, or worse, if there was a violent cause of her death, or someone to blame, I would have been a lot more immobilized.

I think a lot of what the book was about was trying to come to believe that there was cosmic purpose, because it seemed so cosmically ordained in some ways. In a weird way it was empowering that it was random and sudden and without an immediate way to comprehend it. There was nobody to blame and no blame on a personal level. That enabled me to stay focused on her spirit and on my moving on.

Early on I intellectually understood I needed to accept it, because there was no going back. It happened. Of course it’s very easy to say things intellectually, or to write them, or in your best moments to believe them. More often than not our emotional bodies are so much slower. For me I knew I had to find a way to exist with Rosalie in my memory.

It took me three years to incorporate those five weeks of writing—the lessons and ideas that came out. At the end of finishing the book I do feel like I’ve integrated that experience, so that I no longer live in denial of it.

BLOOM: Over time did your need to find a meaning for the tragedy change? Or did you just stop asking the question?

Tom Hart: If there’s a larger meaning, I can’t comprehend it. I’m not a religious person, but I have an inclination toward the spiritual. Every major religion in its own way says you can’t know God’s reasons. It’s too big for our consciousness. It’s unknowable.

And the sad thing is that it’s mostly injustice down here on the physical plane. At some point everybody has to find the balance between seeing that clearly and moving on anyway. They have to square that with their own drive to stay alive and care for their loved ones.

BLOOM: Time is an important theme in the book.

Tom Hart: Is it? I haven’t read the book in a while.

BLOOM: I guess because before Rosalie died time was moving in the way you expected, and you had a sense of how it would continue as she grew up. You had dreams of her future.

Tom Hart: There was this horrible ending of what seemed like ordinary life. Up till then, time made sense. When this happened, there was no time. Time became different. There was only 'before' or 'after,' and how time was measured seemed different.

BLOOM: There’s a panel where you write 'the hospital – no I don’t like that part.' Were the professionals at the hospital compassionate in the care they gave you?

Tom Hart: There was never any hope, but for the most part everybody was compassionate.

BLOOM: Your depiction of Rosalie brings her to life. She’s such a character—from the way she spoke, to the way she moved, and how she brought what you read together in books or saw in movies into her own life.

Tom Hart: That’s really nice. It was part of my plan, but not the biggest part. I think mostly the book was me trying to get through it. But early on someone said to me that a person never dies, or their spirit never dies, until the people they’ve touched die.

It made me realize I had an opportunity to keep her spirit alive, especially in the way she was so alive for me, so vivacious. So it’s something I wanted to do—not exactly capture her spirit, but have it come through on the page.

And I needed to have that connection with her. It was very strange to draw her alive and happy. It was such a contradiction. Drawing those images was fun and delightful and horrible.

BLOOM: Did you have any hesitation about writing such an honest book?

Tom Hart: I didn’t have any hesitations about it. I’d been making books or stories for so long and I was so utterly broken open for that entire time that it didn’t matter whether or not it was too revealing or I was being too honest.

BLOOM: What do you hope people take away from it?

Tom Hart: I think I joked to another interviewer that I have such a long history of no one reading my work that I don’t have many expectations at all. I needed to do the book for my own sake and it really helped me in my grieving.

I think I needed to integrate the experience so it was no longer something I denied. I intended to do that in the way I’ve most dealt with the world, which is through writing and drawing.

For three years I was forced to focus on that time when my life changed so dramatically and become that new person. I became the person that has this in his past and has this experience in his heart. In general I did the book for my own healing.

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Assisted suicide study questions its use for depression, autism

By Louise Kinross

A study published yesterday about doctor-assisted suicide in the Netherlands for patients with depression and other conditions, including autism, raises alarming questions.

The JAMA Psychiatry study looked at 66 cases between 2011 to 2014, including two involving people with autism. Depression was the most common diagnosis.

The practice of helping patients to die was initially limited to those with terminal illness who were mentally competent and had intractable suffering. In the Netherlands and Belgium it's been expanded to include psychiatric patients.

The researchers raise several red flags about their findings. 

In one-quarter of the cases, doctors disagreed about whether criteria in the areas of 'unbearable suffering,' competency and futility had been met, but the deaths proceeded.

Most patients were women (70 per cent) and in over half, doctors cite loneliness as a factor. For example, "The patient indicated that she had had a life without love and therefore had no right to exist" and "The patient was an utterly lonely man whose life had been a failure."

Distorted, all-or-nothing thinking is common in depression, but these statements appear to have been accepted as fact.

In 56 per cent of cases, patients refused at least some recommended treatment, calling into question whether the condition was in fact intractable. 

In more than a quarter of the cases, patients sought help from a doctor who wasn't a psychiatrist and hadn't been involved with their care. Typically, this was a physician with a mobile clinic funded by a local euthanasia advocacy group.

The scientists conclude that the granting of requests for assisted death "involve considerable physician judgment, usually involving multiple physicians who do not always agree, but the euthanasia review committees generally defer to the judgments of the physicians performing" assisted death.

In their discussion, the authors note that in a recent study of 100 people requesting assisted death from a Belgian psychiatrist, 19 per cent had autism.

A JAMA Psychiatry editorial that runs alongside the Netherlands study finds the results troubling.

"Will psychiatrists conclude from the legalization of assisted death that it is acceptable to give up on treating some patients?" Dr. Paul Appelbaum of the New York State Psychiatric Institute asks.

"There is also understandable anxiety about the secondary consequences of an assisted death option for people with mental disorders, including inducing hopelessness among other individuals with similar conditions and removing pressure for an improvement in psychiatric and social services."

Indeed, given that loneliness was a common theme, Dr. Appelbaum questions whether assisted death "served as a substitute for effective psychosocial intervention and support."

The study authors note that requests for assisted death to relieve suffering from depression and other psychiatric conditions require special scrutiny, given that these conditions "contribute to suicides, can sometimes impair decision-making, and are stigmatized."

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'Everyday life no longer made sense to my new brain'

My Beautiful Broken Brain is a documentary about a 34-year-old filmmaker's life following a stroke that left her unable to speak, read or write but able to sense colours and sounds in a new way.

It's produced by David Lynch and looks fabulous.

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Look again: 'What I was teaching was about seeing'

By Louise Kinross

In 2007 photographer Brenda Spielmann began an innovative program at Holland Bloorview that brought together children with and without disabilities to take digital images. She knew photography was an accessible medium because her son Dylan (above with twin brother Kai) has a disability. More recently, Brenda told me she was starting a project that would involve taking mother and child portraits. Some of the pairs would include children with disabilities. I spoke to Brenda to learn more about why parents of kids with disabilities may want to consider photography—for themselves and their kids.

BLOOM: What is your favourite kind of photography?

Brenda Spielmann: I love storytelling, and storytelling to me involves portraiture and a very personal documentary style.

BLOOM: Why is photography a great art medium for disabled kids?

Brenda Spielmann: The reason I began the program at Holland Bloorview is that digital photography is so accessible to children with disabilities as a form of expression and a voice. In the old days, photography was done in the dark room and you stood over trays of chemicals to develop the film. With digital they can do it in their wheelchair and it doesn’t require a lot of dexterity. It allows them to enter the social world because they can take photos of whatever they want, just like everyone else, and post them on Facebook and Instagram and be part of a social conversation. To me it was this entryway that fights isolation that was so important. Regardless of the disability, there is often isolation.

BLOOM: How is photography possible for kids with little hand control?

Brenda Spielmann: Now it’s even more accessible because you can use an iPad with a large screen and an app that allows you to press anywhere on the frame to take the photo. The iPad can be secured with a tripod on a chair or on part of the frame of the chair. One girl in our program wasn’t able to use her hands at all and she became the director and would choose how to compose the shot and said ‘press the button now.’

BLOOM: What was the name of the program?

Brenda Spielmann: I called it Light Writers. When you split the word photography in Latin and Greek, photo means light and graphy is drawing or writing. Photography means to write with light. So I said we’re the Light Writers.

What I was teaching was about seeing. We get so used to everyday life that we take things for granted, or we’re jaded, and we stop seeing. I taught them to see everyday life in the smallest details.

BLOOM: How can photography be beneficial for parents?

Brenda Spielmann: It can be used as a form of expression and to document change in your child. Photography has a wonderful element of surprise. When looking at the photo afterwards,  it may reveal something that you had no idea about.

If you have a child who is non-verbal, the child can take photos of things and objects and you can use that as a tool of communication.

BLOOM: I was thinking that we don’t often see images of kids with disabilities around us. At least in the media.

Brenda Spielmann: I have been thinking about this as well. I think we need to look at images of disability more and more so that they become normal and everyday and people become desensitized and comfortable with them.

BLOOM: Is that part of the purpose of your new mothering project?

Brenda Spielmann: The main thing for me with disability is that it’s about isolation: isolation from the point of view of the person with a disability and the parents. And being invisible. It’s ‘hush hush.’ It’s still stigma. People become shunned in a way. It’s not talked about but it does happen.

I want to photograph mothers of children who are able and disabled and see if something is different. I don’t have a plan on the outcome, I just have an idea.

My idea is to take very traditional portraits. I’m thinking in terms of the whole field of renaissance paintings that glorify the mother, and seeing what comes up because children move and moods change.

People talk about the child with a ‘problem.’ I just want to show the beauty and love of it.

BLOOM: What do you hope people take away?

Brenda Spielmann: My goal ultimately is that the relationship between the mother and child is beautiful—so that a mother of a child with a disability produces the same feeling as a mother with an able or ‘normal’ child as people call it.

If you’d like to participate in Brenda’s mothering portraits, or to learn about her workshops on photographing your family, e-mail Brenda at brenda.spielmann@gmail.com

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One family shows how games make therapy fun

The Globe and Mail has a fabulous video and article about how therapeutic video games are being developed at Holland Bloorview for children with cerebral palsy. Our family leader Cheryl Peters and her daughters Jillian and Lauren are the stars. This is a lovely video which includes footage from Jillian growing up and interviews with scientist Elaine Biddiss and Dr. Darcy Fehlings. Enjoy!

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Yes! Disabled consumers demand fashion and fit

Dear Louise: Your fabulous article (In Lucy Jones’ hands, style and disability are a perfect fit) forwarded to me by my son BJ Miller about Lucy Jones certainly spoke to me: I've been disabled since infancy by polio.  

Growing up with a disability back in the ’50s and ’60s was different from what it is now: back then, people with disabilities were seen as less “desirable” or “acceptable.” One way I tried to fit it was to always wear clothes that were “in.”

Lucy Jones has uncovered a real need, a market segment that is waiting to be filled. She's also chosen to work with a talented and “unfussy, unfrilly” designer in Eileen Fisher, who knows how to marry form and function to yield great design.

Lucy Jones “gets it,” that the way people dress is an important personal statement, perhaps especially for people with disabilities, because, as I learned when I was young, it's one way to “fit in.”

Yet it's extremely hard to find fashionable clothes that are flattering with the myriad of figure and function issues we have.  

The search and the trying on can be physically and emotionally exhausting, especially when results aren't satisfactory. It often comes down to choosing between unfashionable “clunky” clothes that fit and work well (assuming we can find even them), or fashionable ones that don't. 

In addition, the higher fashion clothes are more expensive to begin with, and on top of that, they usually need to be altered or even remade, which adds more expense (assuming we can find a skilled tailor)!

Finding well-fitting and fashionable clothes can be a big consumer of our most precious resources: energy, time, money. People like Lucy Jones can help us conserve these to spend in better ways!

Yours truly,

Susan Miller, St. Louis, Missouri (pictured above with her husband Bruce, right, and son BJ, centre. Many of you will remember the interview we ran with BJ, who was a Princeton sophomore when an accident at college left him a triple amputee. He's now a palliative care doctor at the Zen Hospice in San Fransisco.)

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What's most important? Intelligence or emotional health?

By Louise Kinross

What factors in childhood predict later satisfaction and happiness in life?

Two articles crossed my desk about studies that come to vastly different conclusions.

The first article is about a study published in 2014 in the Economic Journal by London School of Economics (LSE) researchers. This study finds emotional health in childhood and later is the most important predictor of adult life satisfaction. 

Researchers used data from about 9,000 people born over a three-week period in 1970 and tracked by the British Cohort Survey, which has participants fill out a questionnaire about their lives every five to seven years. 

Emotional health, the LSE researchers found, is more important than education or income to future happiness. Least important, they say, is intellectual performance as a child. 

The second article is a piece I read on Saturday by Globe and Mail columnist Margaret Wente: The explosive science of genetics,

It suggests the exact opposite.

In it, Wente refers to a 2015 study in Molecular Psychiatry from Nature.

"Intelligence (as Dr. Plomin and others wrote in an influential piece in Nature) is 'one of the best predictors of important life outcomes such as education, occupation, mental and physical health and illness and mortality.' 

"Intelligence, one of the most heritable behavioural traits, is also an important factor in class differences," Wente writes. "Intelligent people are healthier, happier and stay married longer. They are also likely to marry each other and produce intelligent children. The implications for inequality and social mobility are significant."

The findings obviously have implications for parents raising children with intellectual disabilities. But I think they also relate in some ways to people living with physical disability. In both instances, people with disabilities tend to rate their quality of life much higher than their families or doctors and researchers do.  

The common view is that disability, of any kind, is a negative.

In NeuroTribes, Steve Silberman's groundbreaking new book on the history and nature of autism, he presents a different view.

He notes that Hans Asperger, one of autism's research pioneers, saw a child's gifts as "inextricable from their impairments." According to Asperger, the "positive and negative qualities" of a child with autism, or any disability, "are two natural, necessary, interconnected aspects of one well-knit, harmonious personality."

This reminded me of a piece by parent and author Rob Rummel-Hudson. 

In it, Rob argues that his daughter's differences are generative. "It changes everything about how she thinks and how she processes the world around her," he writes. "Those different paths are hard for her teachers and friends and even her family to understand, and impossible for us to travel. But they are her paths, and they are beautiful." 

I wrote about it here: Disability doesn't just take, it gives.

I wondered how the 'emotional health' researchers written about above would square their findings with the 'intelligence' scientists, and vice versa. 

So I sent an e-mail to each of the lead researchers.

I'll let you know what I hear.

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How difficult could caregiving be? This sister found out

By Louise Kinross

I caught part of this excellent interview on CBC's The Current this morning.

It's about Helen Ries's journey as an Ottawa woman who took over care of her adult brother Paul, who has Down syndrome. Paul, who works delivering mail at Canada Mortgage and Housing Corp., moved in with Helen and her husband after their mother died in January 2015.

Helen's built this amazing website aimed at developing a community of friends and family around her brother so that he can lead a rich life.

She documents her first year as his primary caregiver here in what she calls a failure report.

"I assumed that if I could take a few months off of my full-time work to organize supports, I could sort out our finances and apply to increase my brother's government funding, then hire a few people to help out," she writes. "Everything would be sorted out and I could get back to life as it was in about a year."

A year later, this MBA grad decided she had to resign from her job with the Ontario government. "As one other sister told me, it took her YEARS, yes that is right, years to right herself after becoming the sole caregiver of her brother."

On CBC, Helen talked about how damaging the assessment for supports was to Paul, two days focused on "what Paul cannot do" that led him to self-harm.

She also noted that money her parents had set aside in a Henson Trust can't be accessed because of limits imposed by the Ontario Disability Support Program.

Meanwhile, Paul hasn't been able to get an increase in Passport funding through Ontario's Ministry of Community and Social Services.

"I thought given his situation was truly a crisis he would qualify for some additional Passport funds so I could hire people to support Paul in his daily life," she told CBC.

Take a listen. Or send Helen a tweet. 

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