Eeyore being a zebra

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Mission accomplished

Ellors Madak (right) has been found, and is being held, at a nearby Book City where Ben left him a couple of weeks ago. Ellors -- who teaches anyone who will pay him how to fly spaceships -- is one of Ben's beloved Star Wars characters. Ben has a habit of leaving characters in places where I can only imagine they undertake special missions. Ben has been going into amazon.com and pulling up Ellors every night to remind me that he's missing. So imagine our surprise when I called Book City last night and they confirmed that Ellors was being held at the cash and we could pick him up today. Hopefully he's no worse for the wear!

We learned today that BLOOM won bronze in the 2010 Digital Magazine Awards in the health and beauty category (not sure why they are paired together!). Our brilliant designer Sara Purves had put in an entry which was a fabulous surprise to me.

Flame is a band from upstate New York made up of people with a variety of physical and developmental disabilities. Check them out.

And finally, next Friday I'll be in Ottawa at a national roundtable on the health of parents of children with disabilities. As part of this roundtable, I'm filling out a survey on Oct. 28 (tomorrow!). I'd love your input on the following two questions:

1. What are the most important caregiver-related issues that need to be the subject of future research?

2. What needs to happen to support families of children with disabilities more effectively?

Remember, this is in relation to the health of parents! Please send me your thoughts!

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Parent power

For me, the highlight of the Canadian Association of Pediatric Health Centres’ conference in Winnipeg last week was the parents who spoke and participated.

On Tuesday, we were wowed by two parents who talked candidly about how their worlds’ changed when their sons were born with disabilities. Despite the initial struggles and ongoing challenges, both families made a conscious decision that they would create a happy family, and it was obvious (see photo above) that they’d been successful.

Karen Netzel (second from left), who runs a neonatal family support program at Children’s Hospital in Winnipeg, spoke about her journey raising Matthew (third from left), now 14, who was born at 25 weeks gestation and spent seven months in the neonatal intensive care unit. Karen noted that professionals spoke about Matthew’s future ‘quality of life’ as uncertain and this pushed her to come to her own definition of what constituted a rich life: the ability to love and be loved.

We then heard from Serge Bilodeau (second from right), father to Frédéric, 28 (far right), who has cerebral palsy, and Canadian freestyle skier Alexandre, who won a gold medal at the Vancouver Olympics. “The determination of Fred showed our other children that there was no limit to what they can do,” Serge said. “Alexandre learned patience and understanding and so many other things that kids his age don’t get. At a young age, Alexandre would go to school to pick up Fred – who went to a school for children with handicaps. Alexandre would come back and say: “These people are so happy. The problem is not them, it’s us, when we complain.”

There were parents whose children had died – parents who were still advocating to improve pediatric health care for others. Jonathan Blumberg gave a moving talk at the Canadian Family Advisory Network session on Sunday about his daughter Sasha, who lived for 744 days, and a family fund he's developed to support family-centred projects at Toronto’s SickKids. I’ve asked Jonathan to write a piece for BLOOM reflecting on palliative care and you can read his blog at Sasha Bella Stein Blumberg Forever 2143124.

Back to the CFAN session. During introductions, there was a First Nations woman who spoke about caring for her nephew’s son, who had been born exposed to crack. She described health care on Canadian reservations as “third-world.”

There was a foster mom who called for a ban on alcohol because of the effects of fetal alcohol syndrome.

There was a mom of five children who noted that – unlike parents whose children were born with disabilities – she “chose” to adopt her son with cerebral palsy and round-the-clock medical needs.

There were many parents of preemies – some of whom had survived and some of whom hadn’t.

There were parents of kids whose conditions were undiagnosed.

There were parents. And their stories, perspectives and efforts to improve children's health were powerful.

A special thank you to Marcel Panas for providing the photo!

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Let's hope

We're over at Hopeful Parents today. Come visit us there!

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The window

Today we have a guest blog from Marcela De Vivo, mom to Nathan, 4, pictured above. In Marcela's 36th week of pregnancy, Nathan was diagnosed with severe holoprosencephaly, a malformation of the forebrain. His parents were told his odds of surviving birth were one in 20 million. If he did, doctors said he would be a 'vegetable' and not have a meaningful life. I read Marcela's blog, and one theme that kept popping up was the struggle between wanting to 'fix' our kids through therapy and accepting them as they are. I am delighted that Marcela has chosen to elaborate on that topic. It's one that's dear to my heart. Thank you Marcela!


The window
By Marcela De Vivo


When my son Nathan survived birth, I was told I had a very small window for promoting his development. That window – propped open a few inches – could improve the quality of his life; help him maximize what little brain he has; and teach his brain to rewire itself and function, at least a little.

Nathan was given a three per cent chance of survival at birth. Then he was given a three per cent chance of living past his first year. He beat those odds. The least I could do, I thought, was keep an eye on that window for moving his development forward. The brain is most plastic and malleable during the first three to five years of life, I was told. I had those years to help Nathan’s brain rewire itself so he could learn to walk, talk and hold up his head.

The first year we followed the conventional route. We did as we were told. He had physical therapy and occupational therapy and developmental therapy. We stretched him and did the homework given to us by the therapists.

The only problem was that by the end of that year, Nathan hadn't gained any functional skills. I saw our window of opportunity begin to close. He’s not receiving enough hours of therapy, I thought. That’s why he’s not improving. So I found a pro-bono advocacy group to help me approach our regional, early-intervention services and we asked for more hours – more, more, more! More is better, right? So more we got. By the time Nathan was 18 months old he was receiving about 15 hours of therapy each week.

I kept my eye fixed on that window and we worked hard on his rehabilitation. He’s already a miracle, I told myself. He will make more miracles happen.

But by age two Nathan still hadn't mastered any functional skills. I thought I had better pick up the pace. Everything I knew told me that it was simple anatomy: The brain rewires itself, we have to keep going.

Maybe it’s not the quantity, I thought, but the quality of therapies that make the difference. Maybe we needed to find more effective alternative therapies. So I began the search: Stem cells; G-therapy; IAHP; suit therapy; Tomatis listening training; hyperbaric oxygen therapy. I spoke to moms all over the world. I researched late into the night and chose a few therapies that we started intensively.

And all the while, my eyes were trained on that window. We would make it through, I told myself. Nathan might be a late bloomer, but I would pull him – by the hair if I had to – through.

Then Nathan turned three and he still hadn’t progressed. His head and trunk were as floppy as ever. The muscles in his arms, hands and legs continued to be tight. I was missing something, I thought. I had to be missing something.

Perhaps we simply hadn’t done any therapies intensely enough for a sustained period of time. Perhaps I just hadn’t found the right therapy. I heard about a type of physical therapy called Medek. We packed our bags and went to South America to see Ramon Cuevas, who invented Medek. We rented an apartment and lived in Santiago, Chile for three months. Nathan saw Ramon twice a day, every day, for three months. Medek had gotten so many kids to walk. This was it, I thought. This was the one. I could feel it in my bones.

Except my bones were wrong. My bones didn’t anticipate that three months of therapy with Ramon Cuevas wouldn’t be enough. Pregnant and defeated, we headed for home. Our small window was now barely open a crack.

But there was still a sliver of light. Where there’s a sliver, there’s hope, I thought. I figured it was a matter of the combination of therapies. I realized that maybe not one therapy could address all of Nathan’s needs, so I proceeded to assemble the perfect combination of alternative therapies: Feldenkrais; Advanced Biomechanical Rehabilitation; Cueves Medek Exercises; Cold Laser Reflex Integration; G-therapy; Biomedical Interventions. This was it. This was what I’d missed all along: We weren’t doing the right therapies in the correct combination for a sustained period of time.

Recently Nathan turned four. I took stock and had to acknowledge that Nathan hadn't made functional gains. He has learned to move in a walker. He is in the early stages of learning to use a communication device. But still his head is floppy and his trunk is floppy. He can’t sit up or use his arms or manipulate his hands.

And I wonder. Is it time? Is it time to accept that Nathan is just the way he is? Is it time to accept that Nathan simply is the way he has to be? And if I accept him just the way he is, do we continue with therapies? Why all the money and effort if he isn’t going to improve?

And then one day it hit me that maybe that window of opportunity wasn’t Nathan’s – maybe it was mine.

Nathan is fine. His soul is perfect. His heart is gold. He is a healthy, happy child with physical limitations.

Maybe the window we have to crawl through requires me to love and accept my son – just the way he is. Maybe the opportunity is for me to change my paradigms and realize what’s truly important in life: to live in the present; to appreciate what I have; to express gratitude towards others; to forget about petty problems; and to focus on loving and enjoying the people in my life.

I don’t know for sure. But what I do know is that today, right now, Nathan is healthy and happy. And I – I – am learning to push myself through that window.

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A shattered trust

I'm grateful to one of our readers for sharing the following story.

A shattered trust

When my daughter was discharged from the NICU her neonatologist encouraged us to keep in touch. “We love to get photos” she said. We did keep in touch, but lately I don’t want to send photos.

I worry that in sharing photos with our medical professionals they’ll assume we’re okay and feel they don't have to worry about us. This makes me sad, because it would take such a load off my shoulders if I felt some doctor or nurse – anyone – would worry about something for me, instead of minimizing or ignoring my concerns.

My daughter is chronically sick, which means we need to get in to be seen quickly, but we have ongoing problems with clinic staff and doctors who don't return calls and pages. Nurses frequently dismiss my concerns about my daughter’s health. One doctor failed to respond to two pages, an e-mail from another doctor and a message I left on his voicemail. Instead of saying “I'm sorry I didn't call you back,” the doctor suggested there was a misunderstanding.

When people make mistakes and I ask for change, explanations or at least acknowledgment of what happened, I get yelled at. Both doctors most central to my daughter's care have yelled at me and though she has more specialists and sub-specialists than I care to count, there is not one I feel I can truly trust.

For almost a year I’ve made over 30 calls and worked with six hospital departments to find a way to better handle my daughter’s g-tube changes. My daughter is petrified of the procedure. Her hips are strapped down but I have to hold her arms while she screams, twists her upper body and turns bright red. The first time it happened I had flashbacks to when I had to restrain her for procedures in the NICU. So I've spent months trying to come up with an alternative. I’ve asked for sedation, but been given conflicting information about whether it's safe. I've asked for a child-life specialist to provide support. I've sat outside the procedure room, listening to my daughter (with my husband) scream inside. I've asked if the ‘comfort kit’ is in the room with them, only to be told it’s sitting behind me in the waiting room. I’ve asked if I can take the kit to the room and been told "No." We’ve left in a g-tube that should be changed every six months for 15 months because we can't find a solution to managing our daughter’s pain and anxiety.

I'm also reluctant to share photos with doctors who I feel made decisions for us and not with us. When my daughter was on a ventilator in hospital we asked to have a discussion about how aggressive her care would be. The doctor said “We'll come back and talk to you,” but no one came back.

This is not the life I imagined for my family. Truly, it is not something I could have imagined.

Our daughter is three, but is on her fourth case manager. My typical child has one doctor, who has never yelled at me, never brushed aside my concerns, and never failed to return my calls.

I'm a high-school teacher. As we prepared for the new school year, my colleagues and I discussed how to best meet the needs of our students and their families. We talked about being our best in our most challenging situations. Our administrators encouraged us to come to them with our problems so that we could work together to solve them.

This quote from Colin Powell was shared: “The day soldiers stop bringing you their problems is the day you have stopped leading them. They have either lost confidence that you can help or concluded you do not care.”

These words speak to where I sit now with our medical professionals. I hesitate to ask for help because I’ve become more disillusioned with each failure. Our professionals don't work together to solve problems and give conflicting information. And because actions speak louder than words, increasingly I’m convinced that the bigger problem is that they don't care.

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Parents in the 'peg'

I'm at the Canadian Association for Pediatric Health Centres conference in Winnipeg, Manitoba. Yesterday was an all-day session with the Canadian Family Advisory Network -- parents from across the country who sit on family advisories at their hospitals. It was a fascinating day with many heartfelt firsthand stories of raising -- and sometimes losing -- children with disabilities or chronic health conditions.

I spoke about the BLOOM blog and we did a session looking at barriers and solutions to getting hospitals and family advisories involved in using social media.

I'm looking forward to connecting with more parents and perhaps recruiting a few to guest blog with us. Happy Monday!

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Clinicians set tone for parent collaboration

Two parents shared their perspectives on partnering with professionals to support quality and safety in children's rehab and acute-care at a grand rounds at Holland Bloorview on Wednesday.

Here are a few key messages I took away from this fascinating talk.

Ann Hovey, with daughter Cailyn above who was diagnosed with a terminal brain-stem tumour six years ago (and sat in the audience to hear her mom speak!), spoke about how health-care professionals "are the gatekeepers for developing partnerships. They can work with us to develop our skill sets and dictate whether we become strong partners."

Through their actions, professionals create environments that support or impede parent collaboration and empowerment, she said. "The times when I felt most helpless were not necessarily the most dramatic medically. They were when I was least respected as an important contributor on Cailyn's health-care team, when I was least heard, and when my suggestions were least valued, leading me to feel least hopeful."

She shared a story about her inability to ask for an experienced specialist to perform a life-threatening procedure on her daughter when she didn't feel the neurosurgery resident on hand was up to the task. "In my professional life, I facilitated dysfunctional teams of people who didn't want to work together to exceed expectations, but I couldn't manage this incident with a resident. I felt too vulnerable and overwhelmed by the gravity of the information."

Ann talked about how parents arrive in the system "in ultimate vulnerability" and typically with a history of deferring responsibility for their own health-care decisions to doctors. Some of her strategies for building partnership with parents include: "Listen to parents; teach us how to help our children and support our reasonable choices; involve us in decision-making and give us the confidence that we have something to contribute; ask if we have questions and confirm our understanding on key issues; and stay seated, which means that you are here until we're comfortable with the information."

Heather Evans, the parent of two children who receive services at Holland Bloorview and co-chair of our family advisory, echoed Ann's point about how hard it is for an inexperienced parent to stand up and voice concerns with a medical professional. She described how she knew intuitively that her infant daughter Emma was not meeting her milestones, but her pediatrician dismissed her concerns with a curt: "Go home, everything's fine, and come back in three months."

Heather tried to initiate a discussion about her daughter's development by saying: "You do know she's a preemie, right?" but the doctor never followed up.

Her advice to clinicians who want true partnership with parents? "Listen to understand; have empathy; validate my concerns; and work together to develop a plan."

"All of this may seem like more than you bargained for when you joined your health-care profession," Heather said. "But having a child with a disability is generally more than any parent has bargained for as well."

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Welcome to Monica and David's world

 





















Monica and David airs Thursday night on HBO at 8-9:15 p.m. E.T.

Monica and David explores the marriage of two adults with Down syndrome, capturing their storybook wedding and the challenges of early married life. Here's an interview with first-time director Alexandra Codina (photo right, right), who is Monica's cousin. This interview was shared with BLOOM by BLT and Associates, a social media firm in Los Angeles that is promoting the HBO premiere. I don't get HBO so I hope one of our readers will watch tomorrow night and give us their impressions.

When you approached your cousin Monica and her fiancée David about filming their wedding and post-marriage lives, what was their initial reaction?

Alexandra Codina: They were incredibly open, particularly Monica and David themselves. Throughout the making of the film, they loved having the camera around and seemed to feel understood and acknowledged.

What were their parents' reactions?

Alexandra Codina: Monica's mother, my aunt Maria Elena, was also open. She and Monica were the first people who I sat down to talk about filming. Maria Elena understood from the begining that there was a bigger picture to why the story needed to be told. The challenge came later on, once we realized what a big part of the story she is, and that it wasn't just about filming David and Monica. She hates having her picture taken, so following her with a camera during a chaotic move was her worst nightmare. So negotiating shoot days was tough; but once the camera was there, she was very open and didn't put up any walls.


What has it been like for Monica and David now that the film is out and playing to audiences around the world?

Alexandra Codina: Monica and David are total hams and they love the attention. During Q&As they keep talking about how much they enjoy being stars and famous, and Monica wants to become an actress. But really, I think they are just thrilled to feel such acceptance from the audience and they've become more bold in asking for what they really want. Right now, the focus is finding jobs, which they've asked for my help with.


Did the film follow the course you imagined it would?

Alexandra Codina: I could never have imagined the course this film would take. HBO was always a dream, and it's still surreal that I'll be tuning in to see my film there in a few days. But throughout the making of the film, I worried that people who don't have a personal connection to disability would not be interested; and that the film industry would consider this too sweet a story, and not serious enough. But the embrace of the film makes me incredibly happy, because it's an acceptance of Monica and David themselves.


Why did you begin at the wedding?

Alexandra Codina: This was purely circumstantial. It only hit me a few weeks before the wedding that there was a story to be told. My friend, David Fenster, and I began filming and I had no idea where the story would go from there. Once the editing began, the idea of starting with a climactic event was horrifying—where does the story go from here? The move seemed equally bizarre, but ended up becoming the crux of the story's evolution, and a foil for better understanding Monica and David. Editing was key with this film because of the challenging story structure, and that was a very collaborative process with the editors (Mary Manhardt and Paola Gutierrez), and my friend/mentor, Deborah Dickson.


Why do you think there is so much misunderstanding and social stigma surrounding people with disabilities?

Alexandra Codina: I think it's people's lack of personal experience with disability that is most challenging. If you have a family member with a disability, then it feels very natural when you meeet someone else who does. And I made the film hoping to give people that opportunity—the intimate experience of spending time in Monica and David's world, and realizing just how similar we all are. Once you relate to people on a human, emotional level, it's much harder to dismiss them. And it's also important to see the individuality of each person and not try to define people in one big category; that's confusing and encourages stereotypes and lack of acceptance.


In what ways has society progressed in its approach and understanding of people with disabilities?

Alexandra Codina: I think we've made huge progress, although there is much more to come. The biggest change is understanding that people with disabilities should not be isolated from the rest of the world. For children, that means inclusive learning environments, and for adults that includes jobs and independent living. And while it's a work in progress on all these fronts, it seems that we're most behind when it comes to acknowledging the adulthood of people with disabilities. Marriage and sexuality seem to be taboo, and stories like Monica and David's aren't as common as they should be. The outside world needs to continue to evolve, but families need to let go and be part of that change. Giving adults with disabilities the opportunity to be self-sufficient also removes that stigma of burden. Funny enough, people with disabilities want to work and be out there in the world, we're the ones holding them back.


What was the most unexpected thing that happened while you were shooting?

The letter to Monica's biological father. In beginning the film, I was personally curious to get beyond Monica and David's seemingly happy exterior to understand what they truly think and want. This was a powerful moment because she directly expressed negative emotions, and directed those to the person who'd hurt her. David's reaction was also very beautiful, because they clearly have a whole world of private interaction which even I am not privy to. He knew how she felt before she'd written the letter, and knew exactly how to comfort her.


What do you hope audiences will take away from this film?

Alexandra Codina: I hope that people will see Monica, David and other people with disabilities as individuals. Not heroes, nor victims, but people who are striving to lead ordinary lives.

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A tribute to Ben Tobias

Canadian violinist Adrian Anantawan contacted me this weekend to ask if we would pay tribute to Ben Tobias (above with sister Katie), a 14-year-old who was bullied before he took his own life in August. Ben was born missing both legs and his right hand.

Just a few weeks before his death, Ben, who lived in Bothell, Wash., spoke with Adrian, an internationally renowned violin soloist in Toronto who is also one-handed, to learn about how a bow could be adapted so that he too could play the violin. "My husband Mike did a search of one-handed violinists and Adrian's name popped up," writes Ben's mother Jan Davidson. "My husband called him and Adrian was very generous with his time, talking to both Mike and Ben."

After Ben's death, Adrian asked Ben's mother to write an essay about her son. She wrote "A mother's sorrow," below, while listening to this video performance of Schindler's List, which Adrian has dedicated to Ben. Following the essay is a commentary from Adrian. As you know, I have my own "Ben," and when I read this story about Ben Tobias, my heart broke for him and his family. And then I was filled with anger and outrage at the bullies.

A mother's sorrow
By Jan Davidson

My child, my child, where are you now?


I wrap my arms around his sweater and smell his sweet mysterious scent.


He is gone from this earth, gone from my arms, far too soon and far too violently.


I cry the tears that only a mother can cry. I did not, I could not, protect him from his pain. I did not see, could not see, the depth of his pain. Ultimately I failed him.


My sorrow is bottomless and I will live with that forever.


There is a pain when a child dies of disease. There is a pain when a child dies accidently. There is, I think, a much greater pain when a child considers his place on earth, finds it unworthy, and takes his own life.


And when that death is caused by an inexplicable meanness, nastiness and hate, a parent is left with overwhelming feelings of anger and revenge. A state of grace and forgiveness does not come easily or naturally.


My son, my beautiful, intelligent and wonderful son, was bullied. Bullied to death. He was 14.


Ben's life was never easy. Born in Arsenyv, Russia, he was rejected at birth by his parents and abandoned in an orphanage to die. Ironically, the reason we adopted him was the reason he was abandoned. He was a triple amputee, missing both legs and his right hand.


We devoted our lives to him, never leaving him with a babysitter. We nursed him back to health, taught him to walk, ride a bike, swim and tie his shoes. He rose above his disabilities and became a friend to all. He inspired respect and awe wherever he went, yet he wore the adulation lightly. He could never understand why people thought he was special.


He may have been born without limbs, but God granted him an extravagant intelligence. He was a genius, a child savant. He was an accomplished writer and artist and was studying the violin. He had been reading at the college level for years. He could have been anything that he wanted to be. He had the capability to change the world.


Yet as he was struggling to make the leap between childhood and manhood, with all of his issues, certain other children were determined to hobble his trajectory, to cut him down to their level. They began to bully him, in person and on the net. Every day brought a new set of humiliations for Ben. He was assaulted by physical abuse, verbal abuse, taunts and jeers. One young girl made it her life's mission to make him as miserable as possible and sought him out in school and on the net to make his life a special hell. Yet he never told us, never mentioned his humiliations, never revealed his tears.


We had no idea.


So on the warm summer evening of August 7 when his father found his lifeless body in his room, we were racked with "why" and "what if?" It wasn't until later that we pieced together the tortured and painful last months of his life.


The pain of losing a child is an unimagined hell.


The pain of losing a child to bullying is an indescribable descent into blackness. Somewhere out there are children who chose my child on whom to heap their load of scorn, to torture and to laugh at. They sleep peacefully while I am left with only pictures and memories.


We struggle to make sense of their actions. What kind of families do they come from? What kind of people are they now and what kind will they turn into? What kind of society are we creating that nurtures this kind of behaviour? Didn't they see the pain they were causing and didn't it give them pause?


There is something seriously wrong with our society when a pack of children cull from their midst the most vulnerable and fragile of their group -- a physically disabled child -- and badger him to death. This is the work of animals, not human beings. I fear for the future of our race.


For the people he has left behind, there is no "new normal." There is only a hole that cannot and will not be filled. I am left to pray only that he is in a better place. I pray that he is happy, and at peace.


I love my son with all my heart, and will continue to love him until the day I die. We needed him as much as, or more than, he needed us. We aren't complete without him. This is the painful result of suicide.


Benjamin Michael Roman Tobias, July 30, 1996 to August 7, 2010. Rest in Peace, Sweetheart. We will never forget you.


Love, Mom

From Adrian: I originally came in contact with Ben through his parents, who called me up here in Canada. The interesting thing is that I only spoke to Ben once, a few weeks before his suicide. There was a hope that I could connect him up to my prosthetist at Holland Bloorview to see if we could optimize an adaptation for his violin device, which he had begun using recently. He sounded like a pretty happy kid on the phone, and one who was on the cusp of doing some very special things in his life. There is always a peculiar connection people with disabilities share, and I felt an immediate connection with this young man.

In particular, I was hoping that the violin, and music in general, would become a special part of his life, as it was in mine. Looking back, it was music that helped me survive elementary school bullying, as it was not only an outlet to my emotions, but a way of communicating with my peers on an equal footing.

A few weeks went by, and I was curious if Ben had made any progress, and was about to message him on Facebook, when his father wrote to me about the loss of his son. It was a shock, I remember being particularly emotional. That brief connection we had on the phone was sacred: I feel that every amputee is like an extended brother or sister, as we not only share our struggles, but our hopes as well.

I knew I wanted to do something special for him, although I had no clue about his life and story. It was happenstance that Schindler's List was the perfect choice, as I found out after posting the recording that Ben's family was Jewish, and it was one of their favourite songs. Secondly, the Holocaust is, in a sense, bullying taken to a tragic extreme. The same ignorance that killed seven million Jews was the same ignorance that killed Ben. The piece is an elegy to those who have been lost too soon, and a reminder of the pain that these victims had to endure. It is the most meaningful recording I've played thus far in my career, and I'm happy to do my best to make sure Ben's story reaches as many people as possible.

Beyond that, Ben is an inspiration for my life in general, as he is one of the reasons I'm applying for grad school in education over the coming months. It is sometimes not the children's fault that bullying becomes prevalent in schoolyards. The onus remains on parents and educators to ensure that we send strong messages about social justice and inclusion. These changes have to be systemic, rather than within individual classrooms, and I believe that we can do better.

Ben, dear brother, you are not alone, and for those who are going through similar challenges in life: it gets better!

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Happy Canadian Thanksgiving!

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Snapshots of humanity

Snapshots of humanity

Invisible No More records the lives of Canadian children and adults with intellectual disabilities through 100 photos and 35 stories from renowned social documentary photographer and writer Vincenzo Pietropaolo. Vincenzo spent a year travelling to every Canadian province and territory to meet with individuals with developmental disabilities and their families. He photographed them in everyday places - at school, in the workplace, at home, at the zoo, and on an ice rink. He spent days at a time with them, talking to them and writing about what he saw and experienced. I was moved to hear about what he learned and can't wait to see this book.

BLOOM: How did the idea for this book originate?

Vincenzo Pietropaolo: The Canadian Association for Community Living had its 50th anniversary coming up and they asked if I'd submit an idea for a book. I've done long-term projects on immigrants, refugees, cities and so on - but all with a social dimension. They liked my proposal and did some fundraising to send me across the country.

BLOOM: What kind of experience had you had with disability?

Vincenzo Pietropaolo: I was very ignorant about intellectual disability and had only had superficial contact with people with disabilities. There was a boy in my neighbourhood growing up - but we almost never saw him. All the kids would be playing on the street, and sometimes this kid would come out on his verandah. But then his mom would come and tell him to come in. I wanted to call the book Invisible No More because I felt that all of my life these people had been very much invisible. Families are sometimes ashamed, or society is ashamed, and these people were hidden in homes or in institutions.

BLOOM: What did you learn on your trip?

Vincenzo Pietropaolo: I learned that I don't really know what a disability is any longer. Disability is a very loaded word and we're all disabled to a certain extent. When the book came out some people said: "Some of these people don't look like they have a disability. What's your point?" One of the places I photographed was in factories where people were working for pay like everyone else. When I arrived, I couldn't tell who had the 'supposed' disability. Usually the boss had to point the person out and told me: "I wish I had 10 guys like him because they're the best workers: never late, conscientious." Of course sometimes you can tell someone has a disability because of physical attributes, or because they require a lot of care. I learned that people with disabilities have fewer human rights. They are presumed to have disabilities before they are necessarily disabled. They are presumed to be different, or that something is wrong with them. The experience was humbling and transformative for me. I saw that these are human beings who need care or support. But what makes us a great civilization is whether we make enough room for everyone in our society. How can we not do that in Canada, as one of the richest countries in the world?

BLOOM: Were the families you met well-supported or struggling?

Vincenzo Pietropaolo: I saw both, and it reflects class difference. If a family is very poor you have a lot more struggles to overcome. Not just economic, but hurdles of cultural appreciation or acceptance. If you're a bit better off, you can afford certain things - to have an elevator in your house, or a special wheelchair. I also talked to people who had been struggling all their lives - people who were institutionalized wrongly as children, in terrible conditions, and then let out later as if they had been a criminal.

BLOOM: What kind of attitudes about intellectual disability were people facing?

Vincenzo Pietropaolo: They told me they had to always educate their friends and sometimes their family. Sometimes there were problems within families where some family members would say "that's okay," and others just couldn't cope. I heard that when you enter the healthcare system, all of a sudden your kid is less and less your kid, and you're told what to do, and you have fewer rights. I talked to so many mothers. Many said they had to fight the system to educate the health care professionals about their child. In the end, who knows more than the mother I thought?

BLOOM: What kind of impact did these individuals have on their families?

Vincenzo Pietropaolo: I saw tremendous affection and love within the families that I visited. The prevalent feeling I got was that despite parents’ initial trepidation and fear, the child became an integral part of the family and everyone was enriched by it. I remember being in one woman's house and talking about her 11-year-old boy with Down syndrome. She was telling me about all of her fears and difficulties at the beginning. She was very candid. Then this kid burst into the house and jumped into his mother's arms – just like any kid would. This boy is a little different – he has certain physical features that make him look different. But does he have any less love? No.

BLOOM: What were you trying to convey through pictures?

Vincenzo Pietropaolo: I was trying to convey the humanity in each situation. I wasn't trying to create a catalogue of people – but to record moments of humanity that occurred between people and between them and me. Photography is very subjective. As witnesses, every photographer has their own position and subjectivity. With me and my camera, it's important to establish a feeling of trust and rapport. The first step is to be accepted. I'm trying to photograph from within, not from a distance, as an observer. I don't pose people. I ask them to look at me and talk to me. I usually photograph very close – three to four feet away. Eyes are the most important part of a person in terms of a photograph. When you as a viewer look at a picture, those eyes will be looking at you. I also wanted to make it not so romantic. How do you make a mother or father kissing their child warmly less romantic? I don't want to give this rosy picture. But at the same time, I don't want to give a negative picture.

BLOOM: How do you develop trust with the participants?

Vincenzo Pietropaolo: I have to go in disarmed and ready for anything, ready not to take the picture and leave without the picture. I talk to them about what I'm trying to do and people can tell if you're sincere or not. I explain that I don't want them to do anything special. I want to capture ordinary moments: going for a walk, sitting with a coffee, reading a story. Life isn't about drama. It's about ordinary moments that fill everyone's lives. I want to capture that in a picture that resonates beyond just the family involved, to others, across cultures and across time. I went to the Metro Zoo with one mother and her boys. The boy with a disability had adopted a crocodile, so they were visiting his animal. He doesn't talk very much but at the end of the day there was a gift shop and he told his mom he wanted to go in there. He bought a stuffed baby tiger and comes over and says: "That's for you," and gives it to me.

BLOOM: Wow! What impact do you hope the book will have?

Vincenzo Pietropaolo: I hope it will help make people more aware of the humanity that's hidden in our society and that we know very little about. I thought about how I was going to dedicate this book and I walked into an old cemetery that used to belong to a mental institution. The institution is no longer there, but the cemetery is. And I was shocked when I realized that the graves were unmarked. I dedicated the book to the memory of people with intellectual disabilities who died confined inside mental institutions and were buried in unmarked graves, thus stripped of their identity forever. Who were they? We shall never know.

BLOOM: Who published the book?

Vincenzo Pietropaolo: It's published by Rutgers University Press. We couldn't get a Canadian publisher, though I made proposals to a number of them.

BLOOM: That’s a surprise given that the subjects are all Canadian.

Vincenzo Pietropaolo: Canadians have an inferiority complex about their culture. I'm very upset about it. I think there are two things at play with Canadian publishers. Publishing is a business and they think this book will be too hard to promote -- it won't make a lot of money. And the issue of intellectual disability is one that people don't want to talk about. It makes people uneasy.

BLOOM: When is it being launched?

Vincenzo Pietropaolo: The Canadian Association for Community Living has a conference next week in Whistler, B.C. and it's being launched there. There's a book launch in early December in Toronto and then we're trying to work out a cross-Canada tour in major cities.

BLOOM: Have you kept in touch with any of the people?

Vincenzo Pietropaolo: With a few, yes. I talk in the book about someone inviting you into their home and breaking bread with them literally – and sometimes only spiritually – and you can't help but be affected by that. These people are showing you their innermost feelings.

BLOOM: How did adults with intellectual disabilities feel about their lives?

Vincenzo Pietropaolo: Sometimes they weren't very expressive about that, but I could tell from observing them. I didn't ask them if they were happy or sad. Sometimes I'd spend an entire day with them. You don't take that many pictures, you go for a walk. You realize that they're just like anyone else. They're warm. You see personality traits that keep coming out when you spend enough time with a person. I would go in thinking “How will I talk to this guy?” And then you sit down and start talking and you just keep going. I remember meeting a woman who was working in a bakery. She told me she makes cupcakes and I asked how many she made that day. Most people would have responded “About 100.” But she turned around and counted every single one and said “87.” You have to respect that.

BLOOM: Did you find certain parts of Canada more inclusive than others?

Vincenzo Pietropaolo: I remember one Hutterite family where the question of their child being treated different than others never came up. He did everything everyone else did. He was playing hockey and he wasn't as fast as the others, but he was the one who came up with the idea to build the impromptu skating rink. It was just accepted in that community that you look after your family. So everyone contributed in their own way.

BLOOM: Were there other places?

Vincenzo Pietropaolo: There was Powell River, a small mill town in British Columbia, about four-and-a-half hours from Vancouver. They were a very progressive community in terms of support services and a high level of acceptance. It all boils down to individuals who are involved in running their communities. In the end, if you have half a dozen really committed individuals, they can make a big difference. There was a radio station in Powell River that interviewed me and every time they have a show, they have a person with a disability who co-hosts the program. Sometimes the person doesn't talk very much, but the main host includes him or her in the conversation. They're a part of it. I remember a school in Dartmouth, Nova Scotia where a child with a disability attends regular classes. I watched the other children and I realized they were learning as much from him as he’s learning from them.

Invisible No More is a 160-page hard-cover book with 100 photos and is available at all major bookstores. To purchase a signed copy, please contact Vincenzo at vpietropaolo@gmail.com.

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Inclusion: The dream

A number of stories about inclusion have crossed my desk recently.

Filmmaker Dan Habib contacted me about his documentary Including Samuel. It's a beautiful account of how Dan's family strives to have his son Samuel, who has cerebral palsy, included in a regular classroom and community activities. We also meet other children and adults to hear about their experiences with neighbourhood and "special" or segregated schooling. Dan has agreed to do an interview with us about what he's learned as Filmmaker in Residence at the Institute on Disability at the University of New Hampshire.

Including Samuel was hard for me to watch because it reminded me of all of the dreams I once held for having my son Ben (centre above) included in a school that was a mix of kids with and without disabilities. Over the years, we've had experience with a school for kids with physical disability, a self-contained classroom in a regular school, inclusion in an alternative school with mixed-grade classes, a school for the deaf, and now a high school for students with mild intellectual disability.

In Ben's early years, inclusion was promoted but wasn't backed up with the resources needed to allow a child to be a true participant in the class. Once we reached middle school, school board staff didn't even "pretend" that inclusion existed for kids with developmental or multiple disabilities. In a meeting to discuss my son's high-school placement I asked why all efforts for inclusion puttered out after elementary school. "So is Ben going to sit through a regular high school physics class?" I was asked.

How could I respond other than "no."

At that time we visited a self-contained class -- a model program, we were told -- for students with developmental disabilities in a local high school.

It was a windowless room in the basement, accessed from outside through the janitor's room. When we got lost finding it, none of the regular teachers we asked knew it existed. The high school was a noisy arts school in an old building with terrible accoustics, even though some of the kids in the self-contained class had hearing loss. I left seething at the injustice of these students being hidden away in a dark basement.

Yesterday, Lianna, at Life with Gabriel, posted a fascinating video about inclusion for people with developmental disabilities in Alberta's colleges and universities. I haven't had a chance to watch all of it, but it appears that all of the students are able to communicate verbally. I wonder about the opportunities for students with more complex disabilities.

Last year I interviewed Richard Ellenson, a New York ad executive who brought a voice device to market because he was so frustrated with the technology available to his son Tom. Richard and his family were the focus of a 2004 New York Times Magazine article – The Lessons of Classroom 506 – about inclusion.

"The thing I find most tragic is that we as a society have been unable to find effective inclusionary environments," Richard told me. "We haven't found an appropriate teaching model for children of different abilities, so students with special needs are often excluded from a general curriculum and put in a separate environment. Yet in every high school, one kid is going to go to Harvard and one is going to comunity college. Their experience is not so different from that of people who are typical or have special needs and yet we don't make that distinction."

Yesterday I saw this article in the New York Times about an investigation that's revealed 238 deaths of children with intellectual disabilities in state-run homes in Bulgaria over the last 10 years. Three-fourths of them were ruled avoidable. They include 84 from physical deterioration caused by neglect; 36 from exposure to cold or long-term immobility; 31 from malnutrition; 13 from infections caused by poor hygiene; and six from accidents.

"It's allowed to happen because these people don't count as people," said Judith Klein, director of the Open Society Mental Health Initiative in Budapest. "The government policy toward these children has been criminal," said Deputy Minister Valentina Simeonova, of the Ministry of Labor and Social Policy that oversees the homes.

And then I can't help looking at the photo of Ben at camp above this summer, and wondering: If inclusion can happen there, why not elsewhere?

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Canadian helps disabled speak through music

The AFP news agency posted this story about Stefanie Blain's research yesterday. Stefanie recently completed her doctoral studies in biomedical engineering at Holland Bloorview and is now a postdoctoral fellow at the University of Michigan. I just bumped into Krystal Char (with clowns above) and her father Fred and Fred tells me that when Krystal visits with our therapeutic clowns, her physiological signals are translated into a song which produces an enormous smile. "My wife says it's amazing." 

Canadian helps disabled speak through music

MONTREAL, Canada — Children immured within their severely disabled bodies may soon be able to communicate thanks to a newly unveiled device that translates physiological signals into music.

Stefanie Blain studied for five years the interactions of children with severe disabilities and their parents, as part of her doctoral studies at Canada's largest children's rehabilitation hospital, Holland Bloorview, in Toronto.

"They can 'read' their children by observing minuscule movements of their lips, or changes in their breathing," she told a Technology, Entertainment, Design (TEDx) conference in Montreal.

By measuring those tiny physiological signals, Blain was able to show that Max, a 15-year-old adolescent who was seemingly in a vegetative state, became animated when he spotted his favorite toy.

Even completely paralyzed, the body continues to react by changes in body temperature and sweat levels, as well as heart and breathing rates, she explained.

Blain initially created a graphic translation of these physiological arousals.

"But my curves and 3D simulations didn't speak to anyone," she said with a smile. So, being a musician, she wrote algorithms to convert them into sounds," she said.

"Another child, whom we believed was always sleeping, started to emit a 'biological song' whenever clowns entered his room. It was the first time that his parents and hospital staff realized that he was conscious of the world around him," she said.

The software she created deciphers physiological signals and translates them into a range of tonalities, from soft low-pitched sounds when an individual is calm to high-pitched and more complicated tunes when they are thinking of pleasant things.

"Each 'song' is unique," she said.

"Imagine that when I arrived at the hospital, the hallways were quiet leading to the rooms of children who could neither move, nor speak, and not even make facial expressions," she said.

"Imagine these hallways now (full of music), imagine parents who can really get to know their children."

Currently, the research team lead by Tom Chau is seeking to expand the technology to make it possible for severely disabled children to answer yes or no when prompted, and use a computer.

Copyright © 2010 AFP. All rights reserved.

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Outside the lines

Ben had a rough start back to school.

He missed April, May and June in hospital post-surgery, then he had to stay home the first week because of bronchitis. A week later, he got a bad cold and missed a couple more days.

He's still hobbling around and one of the reasons is that his operated-on leg is now one-inch shorter than the other leg. This is apparently a common result of the kind of hip surgery he had, though we didn't know about it in advance. We're hoping a lift in his shoe may help.

When Ben was in hospital for so long we had a bit of a reprieve from worrying about his learning; our attention was focused on his physical and emotional care. We wanted him to survive the body-cast ordeal and weren't sure if he would walk again. That was about all we could focus on.

Now the never-ending question of how to help Ben learn is again front and centre.

The other day I had a call from the school to let me know that Ben had refused to do his “art” work and had broken the teacher’s ruler in protest. Ben isn’t able to do conventional art because his hands are so weak, small and uncoordinated (though I thought it was quite impressive that he had the strength to break a ruler!). For the same reason, he can’t write functionally. In order for Ben to be successful at an art project, it has to be adapted in some way.

I was told he would be bringing home any work he didn’t do in class from now on.

So he came home with a sheet of paper where he had to colour in some squares on a grid using pencil crayons. I sat with him while he scribbled outside the lines, because he simply doesn’t have the dexterity with pencil crayons to colour neatly inside the lines.

I couldn’t understand why Ben had been given this task, knowing it was something he couldn’t physically do. He knows he can’t do it, and he knows he can’t be successful at it.

Now that Ben is home again, I have time to see all of the gaps in his understanding and communication, but it’s hard to know where or how to address them.

In the small amount of time we have every night, do I try to teach him some new signs, do simple math, work on his reading, or encourage him to practise his keyboarding? How do I work on his reading when he can only show he knows a word by signing it, but we haven’t taught him (because we don’t know) all the signs? I ordered a math workbook but we’ve had great challenges teaching Ben math before. Is it because of the approach we’re using? Or, like the art, am I asking him to do something that he just can’t be successful at?

Ben’s intelligence can be seen when he navigates a computer to find a movie on Youtube he wants to see, or to complete a mission with Indiana Jones or Batman on his Nintendo DS. But he can’t express that intelligence in traditional ways – through speaking or writing.

And he’s so frustrated and anxious now. Anxious, I’m sure, that he’s going to be asked to do something that he can’t.

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