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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