Sadie at the salon

By Emily Urquhart 

My three-year-old daughter, Sadie, was getting her hair cut at a new salon. This would be enough to set any parent on edge—the possibility of tantrums, a stranger wielding a sharp object near your child’s face—but I was most worried about the inevitable comments.

My daughter has albinism, which means she has white-blonde hair, little pigment in her skin and has pale blue eyes. She has low vision, so facial expressions and the identity of people standing at distances more than 10 feet can be difficult to decipher.

At our regular hair salon, which is bubble-gum pink and caters to the pre-tween set, I’ve put a note in Sadie’s file so that the stylists won’t make inappropriate comments or ask questions about her hair. A few times employees have missed the memo but mostly they stay mum, Sadie watches part of Frozen, and she walks out with a lovely little page-boy cut.

Today, however, we were in the middle of an extended visit with my parents in their small town and Sadie’s hair needed a trim, so I reluctantly brought her to a tiny salon on the main street. Deb, the owner, styled my grandmother’s hair until she died in 2007, and she’s cut both my hair and my mom’s hair. Four generations down, she was clearly perplexed by my daughter’s icy locks.

“It looks like there isn’t any colour at all,” she said and then asked if Sadie’s hair had been bleached by the summer sun. My mother was with us, and she stepped in to explain albinism. I felt my chest tighten. My little girl sat silently in the adult-sized chair, propped up on a phone book and engulfed in a silvery hairdresser’s cape.

Then, the doorbells chimed and a soft-bellied farmer stepped into the shop.

“No time today, Al,” Deb said. “I’m booked.”

Al sighed, tugged at his suspenders and lingered in the doorway for a moment.

“That’s some white hair,” he said nodding towards my daughter. “I’ve only seen that kind of hair once before. The Millers over in Belford. The whole family had white hair like that.”

He was referring to a nearby town (I’ve changed the surname and the location). I don’t know this family but it’s quite possible their hair is the result of the same genetic condition that affects my daughter. Albinism is rare—occurring in 1 in 20,000 to 40,000 depending on the type—but it could be connected. 

It was an interesting thought, but mostly I wondered, Couldn’t this just be a haircut? Why do so many of our interactions need to be a science lesson? Most importantly, How was my daughter interpreting this interaction about her appearance?

When Sadie was younger strangers’ comments sometimes wounded me but I didn’t need to worry about how they affected the tiny white-haired infant asleep in my arms. People asked me if I dyed my baby’s hair (um, no), or if her hair was white (yes), or if her father had very light hair (nope). Occasionally I took the opportunity to educate the inquirer on recessive genetics but mostly I politely answered the bare minimum and went on with my day.

Now, the comments and questions are often pointed in my daughter’s direction. It is not her role, at three, to educate the overly curious masses. Mostly these are compliments on her hair, and on the little pink-framed eyeglasses she wears to correct what she can of her vision. I encourage her to say thank you because it’s polite, but sometimes I wonder if doing so feeds into an idea of otherness that I don’t want her to grow up with. These people, however kind and well-intentioned their comments might be, are singling her out as different—over and over.

It is not an exaggeration to say that Sadie and I field questions and address observations every day. Aware that my daughter is listening, I respond with confidence and warmth, but I’ve also walked away or ignored people—especially when they speak loudly about my daughter but not to her or to me.

As a parent I am still navigating uncharted territory. What I know for certain is that how I respond sets the tone for how Sadie feels about these encounters. I can’t stop them from happening but I can mitigate their impact on my daughter. At least for as long as she’s by my side, and when she’s not, she can follow my example.

For my part, I can learn from other parents of kids with albinism as well as people who share my daughter’s genetic condition. Since Sadie was one-and-a-half we’ve attended two National Organization of Albinism and Hypopigmentation conferences. It was a relief to connect with other families like us and to vent about some of our common frustrations. Everyone there had faced remarks about their or their child’s appearance. There was an entire session on how to navigate these tricky social experiences.

This presentation made me feel less alone and offered some excellent tips, like having a short, rehearsed story at the ready for difficult occasions. But it was another mom who shared the most surprising piece of information. She said her eight-year-old daughter loves having albinism because of the compliments she gets on her hair and glasses. The barrage of unsolicited comments has actually worked to boost her confidence. I had never considered this possibility.

Leave it to an unjaded child to rearrange how you see the world. What I’d seen as intrusions, this little girl viewed as self-affirmations. She taught me that how you receive comments are as important as how you react to them. If you perceive these words as arrows they will wound you and leave visible scars. If you receive them as gifts, they have the ability to enrich your life.

Not that every interaction involves a compliment. Like the farmer in the hair salon, many people simply state their observations. But I have a way of turning these situations around.

“Her hair is really white,” the cashier/mom-at-the-park/stranger-on-the-street/fill-in-the-blank will say.

“I know,” I’ll respond, remembering the little girl from the conference. “Isn’t it beautiful?”

Emily Urquhart is a folklorist and writer. Her book about genetics, parenting and storytelling, Beyond the Pale: Folklore, Family and the Mystery of our Hidden Genes, will be available in March 2015 from HarperCollins. 

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Sister story: Daniel makes me who I am

By Anna Penner

As the youngest child in our family, I grew up accepting my brother Daniel's differences as a given.

I don’t remember Daniel ever being able to walk or communicate. I don’t remember a time when he was progressing developmentally. I don’t even remember the time he almost died. For me, Daniel has just been Daniel, the way he is.

Our older brother Andrew does remember Daniel before he started to lose his skills. Andrew used to pray that Daniel would be healed. Then he’d run to Daniel’s side, only to find that nothing had changed. I don’t remember ever praying for healing.

In fact, I was so accustomed to disability as a young child that I walked into the home of some new family friends, looked around, and asked my mom “where’s the handicapped person in this family?” Disability has always been a part of my life and it has had a huge impact in forming who I am today.

Daniel has Batten disease, which is a neuro-degenerative disease. He functions like a six to nine month old. He can’t talk or walk or feed himself, and he wears diapers. We can tell if he is happy or upset but we can't discern what he wants or what would ease his discomfort.

When I was in second grade, our brother Andrew moved away and I assumed the role of the oldest child. Soon I was changing diapers and feeding Daniel through his g-tube. By high school I was taking my parents up on the offer to babysit Daniel to earn money, rather than go out with friends.

The year I entered college, Andrew and my parents became legal conservators for Daniel but I was left out of the process. The legal team suggested that the court would look unfavourably on an 18-year-old taking on this role.

Ten years later I became a legal conservator and the weight of my responsibility for Daniel was simply made official. I feel this responsibility in different ways.

For example, when I think about where I might move for my career, I think about how that will affect Daniel. When I start dating a new guy I wonder if he can ever fully understand the responsibility we will carry for the rest of Daniel’s life. I wonder if the guy carries the gene for Batten disease and if our children could have it. When we plan family vacations we'll have to think about the type of car we rent and where we're staying to make sure it can accommodate a wheelchair. It’s just part of life with Daniel.

The few times a year that I am in town, I go visit him in his group home. Most of those visits are not what I would call enjoyable. I feel obligated to go visit him, and guilty if I don’t. I feel guilty that I don’t visit more often, but after visiting I come away feeling like he probably doesn’t even care. When I walk into his home and call out his name he often turns away and ignores me as if to show his displeasure for my prolonged absence. And yet I continue to subject myself to the torture of simultaneously feeling guilty for "not doing more" and "not wanting to do more."

But even with all of these mixed emotions and uncertainty about how to be the best sister to Daniel, I wouldn’t change it.

Do I wish he could communicate with us? Absolutely! Do I wish he wasn't in pain? Of course! Can I imagine what my life would be without him? No way!

While my friends probably wouldn’t call me a patient person, I know I'm far more patient than I would be if Daniel had developed typically. I know I'm much more understanding and empathetic to those who are overlooked and misunderstood. All of these experiences led me to enter a graduate program in Sociology so that I could look at how children are affected by having a disabled sibling.

My early findings show that in the United States, girls who have a brother or sister with disability tend to get half a year less schooling than their female peers with typically developing siblings. For boys there doesn’t seem to be a difference. While these are raw statistics and do not fit any one individual perfectly, they reveal a disturbing trend.

Every time I see the disadvantage that girls with disabled siblings face, I realize how fortunate I am that I'm even in graduate school and that I have never felt like my parents expected me to care for Daniel more than our brother Andrew—just because I'm a girl. 

My parents don't expect us to be responsible for him financially when they pass away. When I browse message boards for adult siblings I realize how truly fortunate I am in that respect. While there was a lot going on behind the scenes that I didn’t know about growing up, my parents did the best to give each of us the best family life possible. 

My parents also pushed us to perform to the best of our abilities and not take anything for granted. While I sometimes felt the need to make up for Daniel’s deficits, that was never something I felt my parents expected of me. They wanted me to use the gifts that I had and realize that they were just that: gifts. I could just as easily not have had those gifts. They also helped me use those gifts to be a blessing to others. If my experiences, good and bad, can help other siblings out there, then it is all worth it.

With this in mind, I started looking at how siblings fare as they grow up. Although some sociologists have studied children with disabilities or their parents, we siblings have gone largely unnoticed. We recognize that a child with special needs requires additional therapies and that often takes up the family’s time and money. But how does that affect their siblings?

When I look back on my childhood, I can’t think of anything my parents could have done differently. They did not take my commitment to Daniel for granted. They did their best to make sure we were not held back by Daniel’s limitations but also made sure we were engaged in the community as a family. My parents would bring Daniel to my basketball games and I was expected to attend his field day at his special school. This was just what family did. Daniel supported us and we supported him. My parents didn’t make a big deal about it; that’s simply the way it was.

I keep a photo next to my work computer of my family from when I was three years old, right before Daniel almost died. I look at the children in that photo who have no idea what life has in store for them. Andrew and I don’t know what additional struggles we'll face because of our brother's disability. We don’t know how quickly we'll have to grow up compared to our peers.

Next to that old photo I have a recent picture of me with my brothers. In this one we are grown up. The photo captures our personalities. We are happy people. We aren’t jaded by the experiences we did or didn’t have growing up. We easily integrate the wheelchair into our pose. It is just who Daniel is, and that is what makes our family our family.

When people ask what it was like growing up with a special-needs brother I don’t always know what to tell them. It is the only life I have ever known. While I would not wish the pain of it on anyone, I also know that Daniel’s laugh is the sound of true, unbridled joy, and that all of our experiences together—good and bad, easy and hard—have made me who I am. I wouldn’t trade them for anything. 

Anna Penner is in the second year of a PhD in Sociology at the University of California, Irvine.

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Star-studded 'Serenade' benefits Beverley School families

By Julie M. Green

What does indie music have to do with children with special needs? 

Toronto singer/songwriter Hayden Desser and his wife Christie Greyerbiehl worked tirelessly to marry the two for one extraordinary night last Saturday. 

The result was Dream Serenade—a concert at Massey Hall to benefit children with developmental and physical disabilities at Beverley School in Toronto. The evening was spectacular, with performances from Feist, The National, Sarah Harmer and Billy Talent, to name a few.

Like many of us, disability wasn't on Hayden's radar until someone he loved—his daughter—was affected. And while much has been done to raise awareness of disorders like autism, there's a glaring lack of funding for therapies and family support.

Three years ago my son was diagnosed with autism at Holland Bloorview. Aside from a block of publicly-funded speech therapy, any support he's received has been paid for privately, by us. Friends and family are staggered when they learn that this is our reality. I know of too many couples forced to re-mortgage their homes or cash in life savings (assuming they're lucky enough to have savings) in order to afford programs for their children.

With my husband’s family overseas, and my own family living several hours' away, respite is virtually non-existent. And our son's needs are such that we can't get the neighbourhood babysitter to look after him while we take a much-needed break.

Demand for public services outstrips supply. Many children simply aren't getting the help they need, when they need it. Some are rejected for programs they should qualify for, while others sit on wait lists for years, missing out on early interventions so vital to their development.

When searching for childcare for his daughter, Hayden discovered firsthand how hard it was to find an appropriate program. Today, his daughter is a student at Beverley.

Hayden created the annual Dream Serenade to support this cause close to his family's heart.

Proceeds from the inaugural event will fund assistive technology and a custom green playground at Beverley School and also provide respite services to families.

When artists lend their voices to meaningful causes, the result is a thing of beauty. On Saturday night, the atmosphere at Massey Hall was electric. 

But oddly, the highlight of the evening wasn't the Barenaked Ladies goofing around on stage. It wasn't the haunting tones of Matt and Aaron from The National, or the audience singing along to Feist's hit "1, 2, 3, 4." It wasn't even Hayden's moving tribute to his daughter in a new song.

No, the highlight was video footage of the lit-up faces of the Beverley kids during an impromptu jamming session with the performers the day before. 

See you at next year’s Dream Serenade!

Julie M. Green runs a special-needs blog at Yummy Mummy Club. Check out the photo of her below with her son. Photo of the concert above by Farida Peters.

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'There is something magical about this place'

By Louise Kinross

Stephen Dustan is a 23-year-old rehab services student doing a placement at Holland Bloorview. He works with life-skills coach Sarah Keenan, meeting youth in the community to help them set independence goals. Stephen knows our hospital intimately. As a child with cerebral palsy he attended our integrated kindergarten program. Since then he’s been an inpatient and outpatient; a Spiral Garden camper and volunteer; a high-school co-op student in our integrated kindergarten (working with his old teacher Paul Alcamo); and he now works part-time as a recreation assistant with our inpatients. One of our family leaders suggested we interview him.

BLOOM: Why did your parents choose our kindergarten for you?

Stephen Dustan: I think what attracted them most was the fact that I would have therapy and be in a place that was equipped to handle my needs. They loved the idea of it being integrated with community kids because that gave you such important skills of being able to articulate your disability to able-bodied kids, which is something you’re going to do lifelong as a person with a disability.

BLOOM: What do you remember about our school?

Stephen Dustan: I remember having my disability explained in a way that I understood and in a way that I could explain it to other kids. My 'go-to' is that my brain got cut-off from oxygen at birth, damaging the way my muscles communicate to my brain. So my muscles are tighter and don’t grow properly like normal kids’ muscles do.

BLOOM: Did that explanation satisfy most kids?

Stephen Dustan: They often gave me a blank stare. It kind of went over their head but it kind of sunk in. I found my willingness to explain it beneficial. Kids are just curious, they’re not mean by nature, and if you provide them with an answer, they usually were pretty receptive and understanding.

BLOOM: What was it like to move to your local school for Grade 2?

Stephen Dustan: The moments when I would feel different from the class were when everyone was getting ready for recess, especially in winter, and it would take me longer, so I’d have less time outside to play. Getting an educational assistant in place for me was difficult and took some time. But I was good at self-advocacy and stating my needs. So I asked whether I could get ready five minutes earlier than the class. My disability was never an issue for me socially. I have an older sister and I had the support of her and her friends so the kids in my class gave me respect. I always had friends to confide in and rally around me. It wasn’t until Grade 8 that I experienced some bullying.

BLOOM: What happened in Grade 8?

Stephen Dustan: I did my last year of elementary school in a new school that opened in my neighbourhood, so I was starting again without friends. I fell into a group of friends that were kind of mean to each other and very political. I did experience some bullying and I definitely can relate to the isolation that that causes: the feeling of not wanting to go to school; hearing whispering and thinking it’s always about you. I told my friends and parents but I never got the authorities involved. I waited it out until high school and it got a whole ton better then. I remember on the first day of high school I was really nervous and I came through the doors on my scooter and there were three of my old friends from elementary school and instantly I knew that it was going to be fun.

BLOOM: What is your university program like?

Stephen Dustan: I found this York/Seneca rehab program where you get your BA in psychology, which I now have, and then a certificate in rehab services. It’s a general program that covers all aspects of rehab. What I like most is that I had the opportunity for field placement.

BLOOM: What did you do as a placement?

Stephen Dustan: Two years ago I worked with The Centre for Dreams, which is a day program for adults with developmental disabilities in Markham. I worked with clients on social goals, life skills, self-care and vocational skills. I had never worked with clients with developmental disability and it was a really great experience. I got a new appreciation for how honest people with developmental disability can be, how kind they can be, how open hearted they can be. It was a privilege to work with the clients and the staff.

BLOOM: What are you doing in your placement here?

Stephen Dustan: I’m in therapeutic recreation and life skills working in the community with Sarah Keenan. I’m learning about the life skills process, the different ranges of goals that clients set and how to achieve these goals. It’s very solution-focused.

BLOOM: Have you found anything about the work surprising?

Stephen Dustan: I knew I would like it, but the amount I like it surprised me. Life-skills coaching is definitely something I could see myself doing and having this experience with Sarah helps me in my job as a casual staff on the inpatient unit being a recreation assistant. I can apply what I’m learning to both situations.

BLOOM: What is your favourite part of the work placement?

Stephen Dustan: I love the element of counselling and coaching and being a part of someone’s development. My future goal is to pursue a master’s in social work and get into counselling.

BLOOM: Does it seem unusual to you that you spent so much time here growing up and now work here?

Stephen Dustan: Holland Bloorview was such an integrated part of my life. I never had any negative feelings around this place. For example, I didn’t connect it to the more traumatic elements of my recovery after my surgeries when I was an inpatient here. It was physically painful to do rehab, but it wasn’t emotionally painful or painful in a way that would make me not want to come back.

BLOOM: How would you describe Holland Bloorview?

Stephen Dustan: It’s incredibly unique and alive. For me it’s been a place of recovery and opportunity and it still is. There is something magical about this place, especially the Spiral Garden program. I went there when I was little and I later volunteered there. They’re phenomenal at putting this element of imagination, of magic, into a place that traditionally shouldn’t have any. From my time working at Spiral Garden and on the inpatient unit in general I’ve come to see the amount of work and organization that go into creating that recreation hour with the clients gardening. How many people pour their heart into what they’re doing, the amount of organization and heart and energy it takes.

BLOOM: Has your view on disability changed over the years?

Stephen Dustan: When I was a kid I always had this idea that you’re not disabled, you can do anything a normal kid can do it will just be a bit more challenging or you’ll do it differently. That helped me tremendously as a kid, but now as an adult I can recognize that it’s not a matter of me not being disabled. Disability can be an identity, a social identity. So much of my strength has come from 'being disabled' that I no longer see it as a weakness or something you have to distance yourself from or deny. It’s something you can accept and in some ways celebrate.

BLOOM: What are some strengths that have come from your disability?

Stephen Dustan: I think there’s a depth, an internal space that I have to hold things, to connect with people, to understand people’s struggles and emotions. Because I’ve been placed in intense situations that most people don’t experience, I’ve got insight into where strength and hope come from when it’s really dark. I know that that light is inside everyone and you have to find it and if you can relate to it in an authentic and real way, you can make that light brighter in yourself and in someone else.

BLOOM: So disability isn't something you need to 'overcome?'

Stephen Dustan: No. I’ve done a few disability studies courses that opened my eyes to the idea that disability is really a matter of social barrier and not a matter of something being biologically wrong with a person. It’s not about overcoming tragedy. It’s more about transforming tragedy into triumph, but not in the sense that you move past it or get over it. You accept the disability with such wholeheartedness that it no longer is something that impedes you on your path.

BLOOM: What was it like to come back as a placement student in the integrated kindergarten you had gone to as a young child?

Stephen Dustan: So many memories that were foggy came flooding back. Paul is exactly the same in every way I remember him. He still gets the most stoked about dinosaurs of anyone I know. I remember as a student I knew every dinosaur’s name and now I can see why I was so passionate about that topic—because Paul was.

BLOOM: What impact do you think you had on the kindergarten students when you came back?

Stephen Dustan: I hope they can see themselves in me and we have that connection. It’s the idea of 'Hey, I made it, I’m doing well and you can too.' I hope they take from my example that they too can be a part of this world in a real and authentic and powerful way. I try to remind myself that I’m a role model and to hold myself accountable to that.

Here's a photo of Stephen as a co-op student in the integrated kindergarten. By Paul Alcamo.

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Two BLOOM folks come to town

By Louise Kinross

I met this amazing woman Helen Hoens (left) on Wednesday night. A year ago she stepped down as New Jersey State Supreme Court Justice, saying she developed the qualities essential in a judge by raising her son Charlie (right), who has severe autism.

This afternoon she’s speaking on a parent panel at the Geneva Centre’s Autism 2014 conference in Toronto. You may remember this BLOOM piece she wrote for us.

I met up with Helen and Montreal author Joel Yanofsky at a pub at the conference hotel. Joel wrote Bad Animals, about raising his son Jonah with autism, and spoke on a dad panel at the conference yesterday. Take a look at this BLOOM video he did with us about writing his book.

Can you imagine how fascinating it was to chat over dinner with these two folks? Helen is a brilliant firecracker and Joel is funny and thoughtful and honest.

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Brother with disability dies from hospital neglect

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Can't wait for this one

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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 commitment—over Facebook—and 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 light—our great luck this year with Ben's placements—by 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.

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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 users—weakness and strength, agency and passivity—are 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!

 

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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.

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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: 

@NightShiftMD -- how often is slow code called w kids w complex medical needs/and or developmental #disability? http:/

He replied: 

Dr. Brian Goldman ‏@NightShiftMD  18h18 hours ago

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

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

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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.

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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 122^nd 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 info@accessTO.ca.

Silvia generally posts once or twice a week. She'd love to hear about your favourite family-friendly restaurants.

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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 encephalitis—where the immune system attacks the brain—that 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.

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