Maybe if I squint, reality will look different

By Louise Kinross

It must have been because I had just made a mental note that things were going quite smoothly for my son with his post-high school transition and he was quite happy.

It was that same night that I learned from a private physio that he had a curved spine.

I had been trying for months, to no avail, to get someone in the adult system to see him due to concerns that he was walking with a crooked gait.

In the last 24 hours he’s been seen by a specialist and had x-rays taken and I’ve learned that many youth with my son’s syndrome have had surgery for scoliosis and/or have had exostoses—benign bony growths—removed from their spines.

I recall seeing scoliosis listed as one of dozens of potential symptoms associated with my son’s condition. But for some reason I never connected it with my son as he’d had no issues in this area and they typically show up in the teens.

I went onto the Facebook group for parents of kids with this syndrome last night and asked about others’ experiences and was astounded by the number of messages that came back.

So now I’m sitting with the fact that there may well be another surgery or intervention of some kind in my son’s life. His last was last summer.

I took the physio’s suggestions and went online. I ordered lateral supports to try to keep him straight when sitting—at great cost—from the U.S., as well as a special stool. Then we went to Walmart and purchased the table she recommended. Oh, and on the way back, we stopped at Foster’s shoes to ask them to put an additional lift on my son’s shoe.

The lateral supports, which came yesterday, aren’t working that great, but who wants to pay even more money to courier them back to the U.S.? Thankfully, a parent on the Three To Be Facebook group told me about a brand that was cheaper than the original product we looked at. I can’t help wondering why these items aren’t available here? Is it necessary to order from the U.S.? Or are these companies benefitting from my sense of desperation and urgency?

The other thing the specialist said was that my son looked like he was in pain because he’s carrying his body in an awkward position. My son has a very high pain threshold. Recently he’s been asking constantly for back rubs, which he signs as “chop chop.” So we got out the Tylenol last night.

And I almost feel like if I just keep this whole thing to myself, maybe it won’t happen? You know—the magical thinking that Joan Didion talked about in her memoir about her husband's death?

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Rick's rant on Canada's 'war on kids with Down syndrome'

Don't miss Rick Mercer's take on Canada's plans to send a tenured university professor at York University back to Costa Rica because his son has Down syndrome. That's right, Felipe Montoya, who has lived in Toronto with his family for three years, has been denied permanent residency because of the potential 'burden' of his 13-year-old son Nico.

"Surely to God we're not throwing children out of the country because they have Down syndrome?" asks Rick in this brilliant response. "Well, apparently that is exactly what we're doing. There is a war on kids with Down syndrome that I was completely unaware of."

Rick nails it with this gem: "There are absolutely no guarantees in this life when it comes to predicting who will contribute what to society."

"...I was so hoping this story was untrue. I was wrong."

And finally: "My Canada includes an extra chromosome."

Bravo! Spoken like a true Canadian.

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For parents of preemies, rehab is a confusing 'new world'

By Louise Kinross

Children’s rehab is “a whole new world” fraught with stress and confusion for parents of preemies who are moving on from neonatal intensive care, according to new Holland Bloorview research.

Based on interviews with 18 parents of preterm children with cerebral palsy, lead investigator Marilyn Ballantyne found parents commonly feel lost, unsure of what to expect or what services to ask for, and vulnerable.

The goal of the research is to identify how to best support parents during this process.

Parent suggestions for ways to improve the transition included recognizing the child as a whole, rather than separate parts of a diagnosis; better communicating what to expect; providing consistent information on a child’s diagnosis and appropriate services; and connecting parents to consistent health providers, including one that plays a navigator role over the long-term, and other parents of children with disabilities who can provide support.

BLOOM interviewed Kyoko, a Holland Bloorview family leader who worked with the research team to develop the interview questions for parents. We wanted to hear about her experience as the mom of twin boys born at 30 weeks gestation almost 14 years ago in Japan. At the time, Kyoko had three other children under the age of 10 at home.

BLOOM: Tell us about your twins.

Kyoko: They spent 99 days in the NICU, and one of the boys had health concerns. There were minor ups and downs with breathing, fluid intake, bowel movements and oxygen level in the blood, but they were monitored by machines. The nursing and medical staff were very supportive. I was anxious, to some extent, but every time I went to see the boys the staff gave me hope. There was a culture of acceptance created in the way the nurses practised. They were always professional, loving, calm and quiet. If a monitor went off due to a lack of oxygen, they would smile and gently pat my son on the back and say 'You forgot to breathe.'

We were only allowed to visit between 1 p.m. and 9, but that was okay because I had older children at home. All of the doctor visits or special appointments were done in the morning. The nurses kept a daily journal in a scrapbook for each patient documenting the services they received and how much milk they drank, how long they slept, and any activities. It was accompanied with photographs. It was a precious record and it would be ready for us when we got there to catch up.

BLOOM: What were you told in terms of their prognosis?

Kyoko: The day of discharge the chief pediatrician explained that they might have possible delays in speech, hearing, gross and fine-motor skills, because of their birth, and it had to be monitored. But then he said "Raise them as perfectly healthy children." I had previous experience raising children, so I thought 'okay.'

BLOOM: What was it like when they came home?

Kyoko: Full of surprises. We didn't anticipate how hard it would be after they came home, and the number of serious emergencies they would have. They developed life-threatening respiratory problems when they picked up the common cold from my other children.

The pediatrician had given us a brief explanation that they might have delays in development. In our case, breathing was the major issue. We weren't told what might happen, or what kind of therapy would be good for them, or which doctor to see for breathing.

I wish we'd had more information, but it was probably hard for the doctors to predict how the boys would be with three older children bringing home colds. One of our older children's classmates was battling a serious illness and her mother was very empathetic and helpful and played a navigator role for me. She helped with where to go and which practitioner to see and what needs to be done. She suggested the boys should be seen at a different hospital that had a 24-hour emergency unit.

BLOOM: How did you manage all of this with two infants and your older children?

Kyoko: The period between the NICU and rehab was very, very stressful. I was juggling three to four hospitals and running from place to place. We were dealing with different health issues as well as all of the regular checkups. The hospitals were spread out and the taxi bills were enormous (though still better than facing parking problems).

It was a maze of medical services and not knowing what to get and where. When I look back, there was a disconnect in that period between the NICU and the rehab hospital. You had to do everything by yourself and find the specialists. All of the diagnoses and care and services provided in the NICU had nothing to do with the problems the twins developed afterwards. In a way we were lost and thinking 'why is this happening?'

BLOOM: At what point did you suspect that one of your boys might have a disability?

Kyoko: We were back at the hospital often for treatment for common colds, and at one of those visits, my son was diagnosed.

BLOOM: What were you told?

Kyoko: It was very straightforward. He has cerebral palsy and he has limited hand and leg movement. But he could hear and had eye contact and was able to communicate. I couldn't really understand fully what kind of disability he would develop. I asked 'Will my son walk?' The doctor said the goal of therapy is to maintain what he has and to get the most out of what he has. For me, the word 'maintain' stuck in my mind and as I look back I see how this word helped me to balance between reality and ideals.

That word 'maintain' gave me the sense of a process, that it's not the goal of being able to walk like an able-bodied person or being cured, that there wouldn't be a drastic change. 'Maintain' doesn't imply an ideal that a child has to reach. That's why I liked your article 'The Enough House.' For some kids, enough is enough. It was a very simple message of 'don't lose what he has and then help him to grow'. I was allowed to see him as an individual and focus on him and what kind of possibilities he's blessed with and we were yet to find.

BLOOM: Did you then go to rehab services?

Kyoko: Yes, we went to a rehab service for a year before we moved to Canada. My son received occupational therapy and physical therapy for 1 1/2 hours each week and it was conducted in a big room where I could sit and chat with other parents and that was comforting to me. One of the parents recommended that I take my son to see an energy therapist and he helped my son tremendously in terms of speech. But we really just went to rehab for therapy. There was no cafeteria, no playground, no Ronald McDonald playroom. No mental support, or support for siblings.

BLOOM: In Marilyn's research, parents said they wished they'd been given more information about what to expect. Was this an issue?

Kyoko: I wish we'd had more information about spasticity. He was able to stand up against the wall with both feet flat on the floor when he was 18 to 24 months and we were waiting for the moment when he'd take the first step, but he never did. There was a lot of frustration about why he tends to fall or why he can't do this or that. I guess even though the doctor said the goal is to maintain, somewhere in my mind I was anticipating the next step and wouldn't it be nice if he can walk.

It's interesting, but it just came out of my mind that it seems like there are two pieces of me: One is accepting and another one is thinking 'maybe.' Because we were never clearly given a prognosis, a part of me was thinking that maybe something will change. I wish we'd understood more about spasticity and how it affects his overall movement. We were never told that it was something that wouldn't dissipate. We were going through rigorous therapy and exercise and stretching in the hopes it would help, but this is the mystery of spasticity.

BLOOM: You then came to Canada and your kids were in our Play and Learn nursery and then our integrated kindergarten. When you think about new parents or preemies transitioning to Holland Bloorview, is there any information we don't currently provide that would be helpful?

Kyoko: I think it would be helpful for the parents to be given a list of every therapy that is available, not just here, but private PT and OT and speech providers in the community. Because of the wait to get services, and because therapy is three months on and three months off, it would be good to know what other services are available.

BLOOM: What about connections with other parents?

Kyoko: I was lucky that in Japan a mother helped me tremendously and then when we moved to Canada, a mom in our neighbourhood whose daughter had CP also helped me. Then, much later, when my son was graduating from the Bloorview school, the physiotherapist suggested I speak with Dawn Lunan, who was a parent liaison at the hospital, and that was helpful.

I'm not sure what's most helpful for people. Whether you bring a group of parents together to talk, or whether you have a parent reach out to them individually one on one. I go to the Parent Talk group for cerebral palsy. In February we spoke about how in the autism group there's a very strong network. But for some reason, the parent support is still very weak in the CP group. There were only five parents at the session. I wondered why more new parents weren't coming out to these sessions.

BLOOM: I think sometimes parents early on are overwhelmed.

Kyoko: Yes, I understand that feeling of 'you want more information' and 'you don't want more information.' For me, I like to meet with other people who are going through different stages of life. It helps prepare me for what to expect with my son.

BLOOM: Is there something you feel we could do better at Holland Bloorview?

Kyoko: Holland Bloorview already offers many workshops and presentations on diverse topics related to childhood disabilities.

Family support I think can be done better. For example, for the siblings. We're all supportive and trying our best, but to be included in the care is the key. I brought the older kids to the swimming classes downstairs so they could get familiar with therapy and disability in general. I think it would be nice to have more activities for families where you can bring all of your children.

BLOOM: What about respite?

Kyoko: We didn't think about having respite early on. We were very close to each other. We preferred to go out and do something as a family.

BLOOM: How is your son doing now?

Kyoko: In some areas we've been very successful in bringing him up to the surface and he's become truly him: funny, creative, compassionate, a good human being with limited physical abilities. He is able to type his school assignments and play video games with a regular controller. He uses a manual and power wheelchair and is in a regular school program.

BLOOM: What advice would you give other parents?

Kyoko: Look at your child and accept him or her as he or she is, and bring up all of their potential by using therapy and social connections. And even if your child doesn't achieve all of these things, still, she is she and he is he, and there are moments of joy.

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What does IQ have to do with stunting a child's growth?

By Louise Kinross

You may have seen this story about parents who choose to medically halt the growth of their children with severe disabilities through surgery and hormone treatment. It's in this weekend's issue of the New York Times Magazine.

The argument for the treatment is that a child who remains child-sized can be more easily cared for by parents and siblings at home, and included in activities that become impossible as they get taller, heavier and harder to lift. In addition, parents believe girls will be less likely to be sexually assaulted as adults if they don't grow breasts, and want them to avoid menstrual pain. 

What struck me as odd in the article was that the ethicist from the children's hospital that published the first case in 2006, with a child known as "Ashley," notes that treatment is only recommended for children "with the lowest cognitive function." 

This is echoed in the article by parents whose children have had the procedures. One says: "She's going to be a baby all her life in her brain."

The ethicist cautions that intellect can be hard to read in a child with severe disabilities who can't communicate: "...I do think you need a fair amount of certainty there," he says.

But what does low IQ mean for a child going through these procedures?

To clarify, halting growth for girls involves a hysterectomy and mastectomy, usually between the age of three and six. This is followed by about three years of estrogen treatment that speeds up bone age and triggers the early closing of the child's growth plates. "A careful monitoring of calories" is also required, the article notes. When begun at a young age, future height can be reduced by one to two feet, and weight by 100 pounds.

The implication seems to be that a child with the lowest intelligence will not experience the surgeries and hormone therapy in the same way a child with typical intelligence would. 

And why would that be?

The implication seems to be that a child with low intelligence doesn't experience pain. 

It reminds me of that time when the medical profession claimed that babies didn't feel pain (proved oh so wrong, scientifically, since).

What I find troubling in this article is the suggestion that intelligence is the barometer by which medically stunting height and weight through surgery and medication is judged ethical. 

Does this mean that if a person has normal intelligence, then suffers a severe brain injury that requires 24-7 care, it's ethical to surgically alter their body to make it lighter for caregivers to lift? 

Does low intelligence or brain injury make a person less likely to feel surgical pain? 

I didn't know the answer, but I found the assumption troubling.

So I asked two of our staff at Holland Bloorview. 

Peter Rumney is physician director of rehabilitation and complex continuing care at Holland Bloorview and an international expert in acquired brain injury in children. 

"Not usually, no," was his answer.

"Absolutely not," is how Nick Joachimedes answered the question.

Nick, as a nurse educator at Holland Bloorview, led research to address literature that showed pain was under-recognized and under-treated in children with disabilities. "How these children show their pain may be different," he says. "But they are certainly as susceptible [as] anyone else." 

I don't, for a second, question the physical hardship of caring for a child who will grow to adult size while parents age. This is a massive issue. We know from research that parents of kids with physical disabilities are at much greater risk of all kinds of physical injuries and chronic health problems.

But to argue that altering a child's body with surgery and hormones to make care easier is justified because they don't experience pain is plain wrong.

By the way, the New York Times article notes that Ricky, the boy pictured in the magazine's photo above, received estrogen treatment for three years until his toes started to turn purple (thrombosis is a side effect). He also developed breast tissue. His doctor suggested his breast buds could be surgically removed for cosmetic reasons but his parents felt this was unnecessary. 

What are your thoughts? 

Photo by The New York Times

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Suicide, epilepsy drive early deaths in people with autism

By Louise Kinross

People with autism die decades earlier than the general population according to a disturbing study from Sweden.

The study, published in the British Journal of Psychiatry, found people with autism die on average 18 years earlier than peers without the condition. The study showed people with autism and intellectual disability die a shocking 30 years earlier, at about age 39.

For people with autism alone, the main cause of death was suicide. For people with autism and intellectual disability, the leading cause was epilepsy.

Swedish researchers analyzed data from two Swedish population-based registers. They included over 27,000 people with autism, of whom about 6,400 had intellectual disability, and more than 2.6 million people without autism matched for age, gender and county of residence.

On average, people with autism have a 2.5 times higher risk of premature death. Adults with autism and no intellectual disability were nine times more likely than peers to end their lives, with women being at particular risk.

I was unable to get a copy of the full study, but news reports say the underlying factors contributing to premature death may include restricted diet, less exercise, and increased social isolation, anxiety and depression. In addition, people with autism may struggle to explain their health symptoms, causing a delay in diagnosis and treatment.

This mirrors a British inquiry in 2013 that found women with intellectual disability (but not autism) died 20 years earlier on average than the general population and men with developmental disability (but not autism) died 13 years earlier.

British researchers said more than a third of the deaths studied could have been avoided with good health care—more than three times the proportion avoidable in the general population.

"Significantly more people with learning disabilities experience difficulties in having their illnesses diagnosed and treated," lead investigator Pauline Heslop says.

The non-profit Autistica in the UK announced that it will raise $10 million to better understand the reasons for the decades-long gap in life span.

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Ride the 'short bus' and meet five unforgettable kids

By Louise Kinross 

Precious Cargo is a memoir by Craig Davidson about his year driving a school bus of students with disabilities—the iconic “short bus.” Craig, the author of Cataract City and a series of horror novels, took the job to make some money when his writing career fizzled. But he soon found himself struck by the unique characters of the five teens on his bus and his evolving relationship with them. “The way they looked at the world is so vital, so hilarious, so profound and heartbreaking from time to time, I knew I had to make a book about this,” he says. Precious Cargo is being published in May.

BLOOM: How would you describe the book?

Craig Davidson: Do you want my elevator pitch? Failed writer takes a job that he expected to simply fill the day and make a few dollars and ends up having a galvanizing, world-changing experience where some young people alter the way he looks at life.

BLOOM: Did you learn anything about disability that you weren’t expecting?

Craig Davidson: I think I came into it almost a total neophyte, so I learned so many things. I didn’t have anyone in my immediate or extended family that had cognitive or physical disabilities, so my experiences were kind of removed and remote.

It was a learning experience from the moment the first boy stepped on my bus. I think what I really came away with is that they’re just kids, which might seem a little facile. There were differences and they didn’t fade away, but they became much less factors of who I thought they were. Their conditions didn’t define them. It was much more their personality and all the other aspects of them.

BLOOM: Can you describe your relationship with the students?

Craig Davidson: I’d had bus drivers when I was growing up and they were kind of faceless entities. They weren’t mean, but they just got me to school and got me home. I thought that was kind of what I was going to be, but these kids were so talkative and so interesting and so willing to share themselves with each other and ultimately with me. It went from being a job to being friendships with each of those five kids and a more specific, off-the-bus friendship with Jake.

BLOOM: Jake’s is a powerful story. He’s a boy with cerebral palsy who was injured when a drunk driver hit him and his mother, killing his mom. The reader comes to care about Jake and the others because you describe them so vividly. Are you still in touch with Jake?

Craig Davidson: Yes. He still lives in Calgary and the last time I was out there we went out for dinner. He’s in university now, in English, still writing his books at his own pace. He’s 22 now, so in a different stage of life than when I drove him at age 16. He’s still Jake and he’s still lovely to sit down with. He’s a good friend and after a couple of years apart we’re soon back to our silly, ‘in’ jokes and thick as thieves.

BLOOM: What about the other students?

Craig Davidson: I’ve kept in touch, or am Facebook friends, with some of the others as well. I try to keep track of them, but not in a creepy way. I’m interested in their lives and whether they’re happy.

BLOOM: What was challenging about writing the book?

Craig Davidson: The most challenging part was recognizing that you’re dealing with real people. Until this book I was a novelist. You carry some love for the characters you create, but you recognize that while they might have aspects of people you know, they’re not those people. So here are five kids whose lives you want to detail as tenderly and delicately and fairly and compassionately as possible, and to juggle that with your own sense of what the experience meant to you. When you’re dealing with real people and real emotions it’s something you have to be very delicate at navigating.

BLOOM: You capture all of the students’ quirks, their personalities and even the dialogue. How did you do that? Did you keep a journal?

Craig Davidson: I tend to write stuff down on scraps of paper. Because Oliver and Jake and Gavin and Nadja and Vincent were saying such profound, hilarious things, I knew I had to take those down. They’re wonderful little gems that I wouldn’t have been able to summon up on my own. And I wanted it to be as close to what they actually said as possible.

BLOOM: It’s amazing that you were smart enough to do that early on.

Craig Davidson: I would have lost the exact phrasing if I hadn’t. I knew the way someone like Oliver looks at the world is gold, and I needed to save it.

BLOOM: The book is written in a very honest, candid way in terms of your own experiences.

Craig Davidson: Any writer wants a book to do many things. You want it to be touching hopefully, and funny, but in service of all of those things the main thing it has to be is honest, as you said. Honest with my own feelings, my own ignorance in many cases, and my own sense of unfairness.

BLOOM: You mean the injustice that these kids were born with disabilities and others aren’t?

Craig Davidson: Yes. I struggled for the longest time with whether I was being a downer, but the reader can tell if there’s some dishonesty going on there. I wanted to share my experience and all sorts of things that were fun, funny, heartbreaking and illuminating.

BLOOM: Do you think you’ll write about disability again?

Craig Davidson: I already have. Any writer would tell you that his or her experiences tend to feed into new work. My next book after this will be a short story collection. One story is about a bus driver who’s driving a girl with a disability.

BLOOM: Was there any hesitancy on the part of the publisher to producing a book about children with disabilities?

Craig Davidson: I wasn’t in on any of those conversations, so I hope they didn’t occur. The book hasn’t even come out yet and I’ve already had people approaching me to say that their sister, their brother, their wife’s cousin—someone in their family—has a special need. You realize that anything can happen in our development, and disability could happen to any one of us.

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Single mom embraces 'life of triage' with autistic boys

By Louise Kinross

Please check out the latest in our A Family Like Mine series!

Susan Cosgrove is a single mom to three children, including Liam and Phoenix, who have autism, and their sister Kaya.

"I call us the travelling circus," Susan says. "We're a commotion. Everywhere we go, noise follows us, and chaos follows us. And we definitely tend to be the centre of attention wherever we are. Autism is an invisible disability. So when people look at the boys, they don't immediately see autism."

Watch how Susan balances the needs of her boys and daughter Kaya with the help of her mother Rosie, who lives nearby. Susan also offers advice to other parents who've received a diagnosis of autism for their child. Susan is a family leader at Holland Bloorview and sits on our research family engagement committee.

A Family Like Mine is BLOOM's video series about diverse families raising children with disabilities. This video is captioned.

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Troubling message in Italian ad for Down Syndrome Day

By Louise Kinross

Saatchi & Saatchi New York launched this ad yesterday for Italy's CoorDown, a national organization representing people with Down syndrome.  

The ad features American actress and model Olivia Wilde looking in the mirror while a woman narrates: "This is how I see myself. I see myself as a daughter, a sister and a best friend...as a person you can rely on." We see images of Olivia Wilde living her life, at work and play. "I see myself meeting someone that I can share my life with. I see myself as an ordinary person with an important, meaningful, beautiful life." The camera then pans to reveal the real narrator, a young woman with Down syndrome, who asks: "How do you see me?"

I suppose the objective is to make viewers question their judgments about this woman when they assume she's a conventionally beautiful actress, then compare them with their reaction when they realize she's a woman with Down syndrome.

We know from a 2012 French study that adults who say they accept children with Down Syndrome show, at an unconscious level, a negative bias when shown photos of a child with Down syndrome as opposed to a typical child. These negative stereotypes "are the result of social attitudes and values carried by our cultural environment," said lead investigator Claire Enea-Drapeau. "As long as we don't know about them...we are trapped in automatic attitudes or associations. But when you are aware of it, then you can start to struggle."

I suppose the Saatchi & Saatchi ad may wake viewers up to the negative stereotypes they hold when the young woman with Down syndrome is revealed. But then what? How does it challenge those stereotypes? How does it make the viewer think differently about beauty?

And why is a young woman with Down syndrome being compared to a conventionally beautiful actress and model in the first place? Would any of us want our daughters, or any other young woman, to be measured against a Hollywood beauty? 

The young woman in this ad will continue to face the world with features that don't meet Western standards of beauty, and, which we know through the French study, generate automatic stigma.

As a contrast to this ad, I much prefer this one: "Because who is perfect? Get closer." To honour International Day of Persons with Disabilities in 2014, shop windows in Zurich displayed mannequins with the shapes, curves and height of real people with amputations, short stature and a curved spine (see photo below). Meticulous measurements were taken and drawings made of each model's body and limbs, so that exact replicas could be produced. This campaign communicates the value of real bodies, real people.

Unfortunately, the young woman with Down syndrome in the Saatchi & Saatchi ad is not even named in the AdWeek article. According to a director from Saatchi & Saatchi: "This year we're thrilled to work with world-class artists including director Reed Morano and actress Olivia Wilde."

Wouldn't respect start with including the young woman with Down syndrome in the actual story? Naming her? After all, it's her story, right? Not Olivia Wilde's.

This reader comment on the Youtube video sums up the discomfort I feel watching this ad: "Disabled people shouldn't have to imagine they do not look disabled to be beautiful...Disabled people are beautiful exactly as they are...this is erasure and violence to disabled women."

It sickens me to imagine what on earth the young woman with Down syndrome took away from this experience. How is this ad going to help that woman feel comfortable in her own skin, let alone other people with Down syndrome who watch it?

The ad is being launched for World Down Syndrome Day March 21.

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A researcher copes with the fragility of his daughter's life

By Louise Kinross

Pierre Duez is a computer engineer who works in the Prism Lab at the Bloorview Research Institute. He supports students who are developing algorithms for processing signals that are the basis for switches in access devices. After the student creates the algorithm, Pierre does the programming to turn it into a device “that a child can use as their pathway to engage with the world,” he says. For example, the hummer is a switch developed at Holland Bloorview that detects vocal-chord vibrations when a child makes a sound or hums and turns them into computer functions or voice commands.

Pierre has two daughters—Claire, 4, and Ella, 2 (above with wife Martha). At six months, Ella was diagnosed with a rare genetic condition called Pompe disease. It occurs when there’s too much of a certain type of sugar, called glycogen, in the body’s cells. “She doesn’t produce the enzyme that allows muscles to break down glycogen so the cells burst and die, and this leads to muscle degeneration at a faster pace than they’re reproducing,” Pierre says. “She has a more extreme form.”

Ella spent half of her first year in hospital and has had a few surgeries. At home, night nurses monitor her bipap and oxygen and suction her. She also uses a g-j tube and wheelchair. When she’s well Ella comes to Kindercircle daycare at Holland Bloorview. Every other week she spends a full day at SickKids where she receives a synthetic enzyme to fight her condition, which is life-limiting. Pierre spoke about what it was like to have a child diagnosed with a degenerative condition while working at Canada’s largest children’s rehab hospital.

BLOOM: Did you have experience with disability before you came to Holland Bloorview?

Pierre Duez: I came in completely unexposed to the field of disability, and especially pediatric disability. It’s sort of an elephant in the room for a lot of people who work at Holland Bloorview who don’t come from a background where they’re interacting with disability on a regular basis. There’s fear. I was 31 when I came here and we didn’t have kids yet but were planning on it. I was suddenly more aware of the possibility of not having a typically developing child.

But as I began to work here and engaged with employees and some of the great grad students and as disability became more normalized and just an aspect of life to interact with, I began to realize the other side of the coin. You see the support from staff and you see the families coming to visit and that support doesn’t disappear. Then you hear how families are supported by larger communities. What started out as fear became a realization that it’s different, but it’s not a lesser existence. That support is still there and families are not suddenly stranded.

BLOOM: That’s interesting, because many parents who have no exposure to disability feel alone when they receive a diagnosis.

Pierre Duez: I think I was very fortunate to work here because it helped me come to terms with the ramifications of Ella’s condition much faster. I didn’t have to find Holland Bloorview—like many families do—as a far-away place. I didn’t have to travel here physically or conceptually. Because I worked here, my expectation was that we would have this net of support, and I also had some sense of what services I could leverage.

BLOOM: What’s been the biggest challenge?

Pierre Duez: The fact that Ella’s disease is life-limiting. While Ella was in the hospital in the fall she had two respiratory and cardiac arrests. It’s one thing to have this conceptualization that her decline will be slow, and you have time to get used to it. But we have the possibility that it can strike out of the blue, because her respiration is weak at the best of times.

BLOOM: Those experiences must have been incredibly traumatic. How do you deal with that afterwards? Is there anything you do, like meditation, to help you cope?

Pierre Duez: I’m not nearly organized enough for that. For me, you can’t go into denial about the fragility of life, but you also have to look at the moment as well. When Ella’s doing really well and is really happy, I have to tell myself that I’m not worried about her now, which is really good. When she gets sick, I’m much less cavalier now than I was before the cardiac arrests.

It’s realizing that what will come, will come, regardless of our attitude towards it, so our trick is to make the most of the intervening time. I feel that the best I can do, and this applies to when we got the diagnosis and other setbacks, is to accept what’s there. And if not, to take it in stride, at least to recover in stride.

BLOOM: Acceptance is key, but most parents find it so hard not to fight what is there.

Pierre Duez: Denial and bargaining are unavoidable reactions. Having been in this community and having seen children, current and past research participants, who have died, it’s devastating. But now it’s on my radar. Because it’s already on my mind, it’s something I can accept a little more easily.

I feel I have a head start, which means that I don’t have to get so hung up on future loss and can move past that to what is most important in the short term: what will make Ella happy today, what equipment or services does Ella need, and how to make sure that everything is as good as it can be for her.

BLOOM: Are you able to stay in the moment with her?

Pierre Duez: Yes. She makes it very easy to stay in the moment.

BLOOM: Tell us about her.

Pierre Duez: Ella has opinions. She’s non-verbal, because her development is delayed by her physical limitations, but her receptive language is bang-on. She’s a very clever girl who knows how to communicate and get what she needs through gestures, tone of vocalizations and eye contact. She’s very clear. Even if you don’t know her, you will know if she’s happy, displeased or content.

BLOOM: What does she like?

Pierre Duez: People. She’s loves interacting with people. She’s a cuddler. When someone she knows and likes walks into the room, she lights up. She’ll do this big happy dance and reach out her hand and keep it there till the person comes and holds hands with her. She’s big into pretend play. She’ll suction all of her stuffed animals. She’s done music therapy and likes xylophones and cymbals. She loves turning the pages of books. She likes watching Backyardigans on her iPad.

BLOOM: Is Martha at home with Ella?

Pierre Duez: No, Martha and I both work. Ella is at Kindercircle and that has been fantastic, even though it’s not geared toward children with special needs. They have gone so far and above the call of duty, making trips to SickKids to get training on how to suction Ella and how to connect and disconnect her food. I’m on call if they need it, but they’ve learned to be the day-to-day care.

BLOOM: How do you manage both working with all of Ella’s medical visits?

Pierre Duez: We try to line up hospital visits when Ella is at SickKids every other Wednesday, so she sees other specialists that day if she needs to. Her grandmothers are retired and they can spend Wednesday with her at the hospital. Tom Chau has been incredibly supportive in giving me the flexibility I need if there’s a morning visit I need to take Ella to. Martha and I and her nurses overnight have been trained by physiotherapists on how to deliver twice daily 'chest percussion' and 'cough assist.' When Ella is healthy, she’s a good sleeper and doesn’t need a lot of intervention besides suctioning and repositioning.

BLOOM: What impact has Ella’s disease had on your daughter Claire?

Pierre Duez: Claire was 2 1/2 when Ella was born and she just accepted the situation. She had no sense of her ‘normal’ as opposed to everyone else’s ‘normal.’ We’ve always made huge efforts to keep Claire’s life as normal as possible. When Ella is in the hospital, we try to both be home at night and have a family member visit Ella. We put out calls to people, the more visitors the better. Of course we pay in extra guilt the times Ella spends alone at the hospital, and weekends can be very difficult.

BLOOM: Many parents find it hard to ask other people to help out.

Pierre Duez: We are in that camp as well. But our friends and family keep telling us we have to reach out more.

BLOOM: Has anything changed as Claire has gotten older?

Pierre Duez: Ella’s transition from home to hospital and back affects Claire a lot more now. Since last July, Ella has been in the hospital at least once a month and for one two-month period. What will often happen is Ella goes into the hospital during the day, and when we tell Claire that Ella’s back at the hospital, she’s subdued. She usually knows a day or two in advance when Ella will come home and she likes to tell all her teachers and everyone she knows that her sister is coming home.

BLOOM: Have you connected with other families who have children with Pompe disease?

Pierre Duez: We haven’t. Neither of us have really looked at shared stories and experiences as a way of coping. I’m an engineer, so I’m more likely to say ‘let’s find a solution’ rather than ‘let’s share experiences as a form of therapy or catharsis.’

BLOOM: Has anything changed in the way you look at disability or difference since Ella was born?

Pierre Duez: Any of the changes in my views happened in the first five years I was working here. I do empathize a lot more with parents of kids with disabilities and I find myself chocking back tears a bit more when I hear personal stories.

I am blown away by the amount of care Ella is receiving. She gets physiotherapy and occupational therapy through Holland Bloorview, and is seen by seating and the neuromuscular team. Everybody is 100 per cent invested in making sure Ella gets what she needs.

The biggest surprise to us was the cost of all of this equipment. The social workers we’ve been connected with have helped to educate us on third-party funding that’s out there to offset the costs. Even though I worked in pediatric rehab, I was blind to the cost of equipment.

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BLOOM media roundup

By Louise Kinross 

I recently received some amazing photos from the Ravn family and couldn't resist sharing one. Eric, the Bumblebee transformer on the right, was an inpatient here following a stroke several years ago.

Last week I was part of a research team here at Holland Bloorview that presented our findings on a six-week narrative training group for our inpatient nurses. The group met for 90-minute sessions to read and discuss patient narratives and write and draw about their work here with children and families and their own healthcare experiences. Data from pre- and post-interviews showed an increase in empathy for clients and families, for coworkers on the nursing team, and for individual nurses themselves. 

Here are some recent media stories related to disability, parenting and health. If we missed a good one, please share the link in the comments. Thanks!

York University prof denied permanent residency over son's Down syndrome CBC News

A Costa Rican family is leaving Toronto after three years here because immigration officials say their son's Down syndrome is too much of a burden on taxpayers.

Fiction, like life, tells disabled people their lives have less value The Guardian

In real life, marginalized people are often valued less...For example, it may be legal to pay disabled people below minimum wage, sometimes only pennies an hour. disabled people may even be barred from receiving organ transplants or other life-saving medical care.

In assisted dying, remember this: We are all fragile The Globe and Mail

Jean Vanier: "With...the right to die, we must take care not to obscure or forget the innate dignity of those who are vulnerable or reinforce an ideal that only an independent life has purpose and value."  

When doctors should say I don't know The Atlantic
 
"By the time you get to med school, you're already primed to think that everything is about a right answer. Then what happens when you get into the practice of medicine is, it's a lot of fuzzy variables."

'Imbeciles' and 'illiberal reformers' The New York Times

Forcefully sterilizing young women with disabilities was once considered the progressive thing to do in America. 

Rethinking the rules for police interrogations Undark Magazine

A 2004 review of the literature on false confessions found that youth and those with intellectual disabilities were most susceptible.

A push for less expensive hearing aids The New York Times

The average price of $2,500 for each of two explains why only 20 per cent of those with hearing loss wear hearing aids.

Designing a modern home with accessibility in mind The Globe and Mail

"All of these lessons here, I keep thinking I can design smaller houses that are totally accessible for people who don't want to leave their neighbourhoods." 

Where are the disabled actors? The Independent

Prejudice will not end with a few bit parts in films and soap opera. But film and television can play a role breaking down bigotry, helping to bring a segment of society in from the shadows and giving hope to the next generation.

People with learning disabilities are still not recognized as fully human The Guardian

Sara Ryan: "My son Connor Sparrowhawk's death in a Winterborne View-type unit was preventable. We don't need a commissioner to enforce pledges on better treatment. Just treat everyone as a human being." 

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Part 2 of Global News story on home nursing airs tonight

BLOOM contributor Marcy White was featured in a Global news story last night about her inability to get consistent, competent nurses to care for her son Jacob, who has complex medical problems, at night.

You may recognize the adorable Kian in the picture above. He and his mom Samadhi Mora Severino also participated in the story.

Marcy wrote an earlier piece for BLOOM on the topic: Home nursing is not respite for this mom.

Global plans to air a second piece tonight that includes reaction from Health Minister Eric Hoskins.

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Mailbag: A reader responds to a post on disability, friendship

By Louise Kinross

A couple of weeks ago Meriah Main, a nurse in Vancouver, responded to a piece I wrote on friendship and youth with disabilities in the Huffington Post about four years ago (it generated over 650 comments, but the comments are no longer visible on the website). I wanted to share her response and our correspondence as I think it will interest you. Meriah is pictured above (centre) with her husband Gabe and their roommate Ariel. Thanks for letting us share this Meriah! Louise

Meriah Main, Vancouver:

I’m about to criticize your article. And I’m not a parent who fears your child will “give less” to my child than another typical child. I’m not a parent at all.

I’m a 30-year-old woman, and the only person I know who has true, genuine friendships with individuals my age with cognitive disabilities. And your article irritated me.

For the simple reason that these friendships I mention above, have grated on me and worn me down over the years and I’ve come to the belief that it’s a high expectation to think your child will have friends.

I wasn’t always so jaded.

Let me tell you who I am and how I came to be me.

I was always fascinated by the kids with disabilities at school: “Why does Jane bite herself?” “How does Billy say Hi?” I came by this never-ending curiosity genuinely.

I had parents approach me in elementary school and say “Thank you for being so-and-so’s friend! She talks about you all the time.” And, sure that was nice…but the true reward for me at that young age was spending time with people who interested me and who I had fun with.

By the time I was 12, I had been connected, by my school, to a magical, wonderful place. It was a project put on by the local park board that aimed to foster relationships between youth with disabilities and youth without disabilities. It was an amazing time.

From the age of 12 until I was 23, I put my heart and soul into this program. The set up was: 10 youth with disabilities, 10 youth without disabilities, three amazing staff. Every day in summer, and every Saturday during the year, we would all get together and do fun stuff.

During the years I was a part of this group, I met many, many great friends.

I made friends with a girl my age there. She is non-verbal and has challenging behaviour and communicates very differently (sitting in the middle of the road and biting herself might be how she would say “I don’t want to leave yet” for example).

I found her adorable and fascinating and funny and I learned not only how to communicate with her, but to read her mind. And she learned the same of me.

Over the years, she and I have spent plenty of unpaid time together. I have also been paid to support her periodically.

In fact today, at age 30, I remain friends with her in addition to many other close friends from that program—some with disabilities, some without.

So what’s my point? This all sounds great to you I suppose. This is what you’re talking about!

This program lived and breathed disability rights, inclusion philosophy, people-first language.

But I must say, I was the only person from the hundreds of typical youth I met there that actually branched out and became friends with any of the youth with disabilities.

Everyone had a good time. But developing friends in the true sense of the word. No. Only myself.

During the 10 years I was involved in that, I also worked in various settings supporting people with disabilities in the community. My job was to “facilitate community inclusion and build relationships.”

It was impossible.

I was their friend more than anyone in the community. Yes I was being paid but the blatant reality was that the support staff were the closest things these people had to friends and creating them in the community was impossible. Believe me, I tried.

In addition to these two endeavours, I also spent time living in an inclusive house hold where myself, two friends and the girl I spoke of above lived together as roommates.

My typical friends tired quickly of her sounds, behaviour, waking up at the crack of dawn excitedly. It was like having a little kid around.

And the truth is. It is.

What I describe above is my life as a friend and advocate of friendship between individuals with disabilities and typical kids/ teens.

It doesn’t really work because as we grow up and become adults, our interests and priorities change.

I’ve let go of friendships with typical people because our life paths began to go in different directions.

I’m married now and I’m much less interested in talking with my 21-year-old co-workers who want to talk dating.

My friends with kids bore me going on and on about their child’s potty training.

And my non-verbal friend who bites herself when she’s upset is draining on me. It feels like baby sitting on top of my already chaotic life

This isn’t to say that I dump friends when they bore me but the reality is friends come and go and people who don’t share anything in common with their peers aren’t likely to offer stimulating friendships.

I have two questions for you.

Do you have friends with cognitive disabilities that you take time out of your week to go spend time with?

Second, do you think you would have friends with cognitive disabilities if you never had a child with a disability yourself?

It was fun for me when I was young and curious and part of an activist group. But when you become a teenager and your world is dating and talking about life, when you become an adult with a million responsibilities, these friendships become irrelevant.

It’s hard work to maintain even my most fruitful friendships in life, let alone ones where conversation isn’t stimulating and we share nothing in common.

I do maintain these friendships, mostly in the form of paid respite (with occasional unpaid stuff), but I do not expect that this should be typical. I’ve never even seen it occur except for with myself and it’s become a lot of work.

And a quick add on, which is in response to something you say in your article: Why, if families of people with cognitive disabilities can have rewarding relationships with these individuals, why can't others?

Simply put. Family is family.

Family is a different relationship than friendship. And to some extent family carries obligation that friendship does not.

Louise Kinross, Toronto:

I really appreciate your writing.

I think your first question is a good one—do I have significant friends with cognitive disabilities?

I work in a children's rehab hospital, so I have acquaintances with many people with physical and developmental disabilities. My closest friends are parents who have children with disabilities. Because of my role here, some adults with cognitive disabilities have “friended” me on Facebook. I have gone with my son to a L'Arche arts program for adults with intellectual disabilities and participated. I do not have a “best friend” with a cognitive disability. During my school years (because I'm an ancient 52) children with disabilities were not in our schools, they were segregated.

I think that first question is a fair and good one. And I don't know if it will change in the future. At some point I hope my son—now 21—will move into some kind of independent, supported living and I would imagine that will be with roommates with disabilities, so perhaps I will have the opportunity to get to know adults with intellectual disabilities more deeply. My son was mainstreamed for most of his high school years.

Your second question—would I have had friends with cognitive disabilities if I didn't have my son with disability?—I think is irrelevant in the sense that I want to live in a world where we are always making more people who are marginalized—for any reason—feel included and part of the mainstream. Just because I didn't have exposure until my son was born to people with disabilities doesn't mean that I want that to be the status quo in the future for people growing up.

I do accept that because of the degree of a person's disability—especially if they can't speak like my son, and use sign language which is not generally understood—that there are massive obstacles to having what would be considered true friendships.

I accept that but I don't just stop there and say it's impossible. And given what you've written to me, even though at some points you say “it's impossible,” you are also telling me that you continue in some ways to have relationships with people with disabilities.

I will keep in touch and I do value you writing to me, and your honesty, very much.

Meriah Main, Vancouver:

Thanks for your response. I was honest with you because we don't know one another. It was easier to say to you, than parents I know. I responded with frustration because it's something I've heard from parents over and over.

Additionally, “facilitating friendships” is a goal of the community inclusion movement and through my experiences, I’ve become frustrated with this philosophy and I've come to believe that the focus must be shifted in order to achieve this.

I believe the shift must be in two essential areas: creating opportunities for friendship and redefining friendship.

If more inclusive and communal space is created, I believe these communities can provide friendship for individuals with disabilities. Even then, I don't think friendship will look exactly the same as it does between two people without disabilities, but I don't think that matters.

“At some point I hope my son—now 21—will move into some kind of independent living and I would imagine that will be with roommates with disabilities, so perhaps I will have the opportunity to get to know adults with intellectual disabilities more deeply. My son was mainstreamed for most of his high school years.”

This point supports my message which is essentially that, unless people enter our lives on a natural basis AND it becomes somewhat “easy” to be in touch on a regular and ongoing basis, a friendship is unlikely.

Creating more stimulating inclusive spaces (youth groups, places adults can go during the week and communal living like L'Arche communities) is the true answer I think.

My husband has a physical disability. We rent our upstairs to Ariel, an individual with a cognitive disability. As both my husband and Ariel need support, they share some of support, which saves both parties money and makes for a great, mutually beneficial friendship.

"Your second question—would I have had friends with cognitive disabilities if I didn't have my son with disability I think is irrelevant in the sense that I want to live in a world where we are always making more people who are marginalized—for any reason—feel included and part of the mainstream. Just because I didn't have exposure until my son was born to people with cognitive disabilities doesn't mean that I want that to be the status quo in the future for people growing up."

I share your perspective. I don't think we should all just settle with the current state of things. Pushing for change is how the world becomes a more aware and accepting place. The reason I asked that question was to say: How can we expect people who have not been touched by cognitive disability to care or to try to make friendships?

Again, I think the answer is creating more inclusive situations...And ones that are mutually beneficial. This way, people gain exposure.

“I accept that but I don't just stop there and say it's impossible. And given what you've written to me, even though at some points you say ‘it's impossible,’ you are also telling me that you continue in some ways to have relationships with people with disabilities.”

Totally—we should never stop fighting and hoping for a better future.

And, yes I have these friendships—but I don't find them inherently mutually beneficial in the same contexts I do my typical friends.

This is why I think that deciding to redefine our, frankly, ableist idea of friendship will, in turn, create more friendship for people with disabilities.

Ableist because the friendships I hear people wanting for their children, and the friendships it was my job to form—were friendships that look just like the ones you and I may have.

The redefinition in my mind means both seeing the interactions that happen within structured communities (schools, day programs, group homes) and embracing that many friendships come in the form of paid staff.

If we can accept these two things, we can create more inclusive spaces and celebrate and support the true friendships that exist between paid staff and the people they support.

And you're right. Not impossible.

After I sent the email I remembered two other people I know (both people who are paid support for individuals I know who take significant unpaid time out to maintain friendships with the people they support).

Paid support people are actually some of the truest forms of friendship I've seen. My husband just made a fantastic point and said “Who cares if they're paid? They aren't paid to be friends.” They are paid support and within this natural, mutually beneficial situation, a relationship is often formed. This doesn't mean that every support staff is a friend, but I think that if a relationship is formed, it shouldn't be undermined. I believe it is just as valuable.

Even if they disappear after they quit.

Friendships come and go for everyone. I think that because individuals with cognitive disabilities live in different circumstances, their friendships exist within different circumstances.

Anyway, thanks for listening. This is stuff I have thought long and hard about.

At one point in my life it was my goal to create inclusive spaces like I describe above but life has gotten busy. It's still something I certainly hope for in the future.

I would love my friends with cognitive disabilities to have more enriching daily lives and bigger social circles into their adulthood. This said, I do think parents (and others with the passion and energy) must put their energy into community.

Louise Kinross, Toronto:

Thanks so much for your detailed response. I’m particularly interested in your thoughts re paid staff. Right now my son is doing a planning process through our government, and I know that one of their goals is that over time the person have more interaction with people who are not “paid.”

Perhaps this is a misguided approach.

Meriah Main, Vancouver:

We can chat about the paid friend thing anytime.

As you said—it’s not impossible but I think it's a set up for disappointment for families to set out in the community looking for meaningful unpaid relationships in the contexts we're looking in.

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Cats, cats, cats!

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What's new?

By Louise Kinross

This is a photo of my son with "Betty" at a volunteer job he does at an adoption centre for cats. He loves it! He has a whole bunch of tasks that he works through. Cleaning cages, sweeping, feeding, brushing, socializing. He's waiting to handle his first "adoption."

What's new with you?

Here are some stories you may be interested in.

When doctors should say I don't know The Atlantic
Fascinating interview with author Steve Hatch on his new book Snowball In A Blizzard: A Physician's Notes on Uncertainty in Medicine: "By the time you get to med school, you're already primed to think that everything is about a right answer. Then what happens when you get into the practice of medicine is, it's a lot of fuzzy variables.

Where are the disabled actors? The Independent
Hollywood could play a role breaking down bigotry against disabled people, but for now "diversity" is just an act. 

World's first armless pilot, BBC World Service
In case you missed it, this is a fabulous interview with Jessica Cox, a 33-year-old Arizona woman whose life changed the first day of Grade 8, when she decided to leave her prosthetic arms at home. Now she's the first pilot to fly with her feet. 

People with learning disabilities are still not recognized as fully human being The Guardian 
Excellent piece by Sara Ryan on the preventable death of her 18-year-old son with autism and epilepsy who drowned in a bath in NHS care in Britain.

Judge calls sex assault a 'gross breach of trust' The Toronto Star
This is a terrifying story about how an overnight care worker at a group home in Toronto was convicted of sexually assaulting a woman with a developmental disability in a group home. Thankfully the woman could speak. It's chilling to think of what would have happened otherwise.

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