BLOOM media roundup

If you haven't seen the first video in our A Family Like Mine series, covering diverse families raising kids with disabilities, check it out. Rob and Dave, above, are a married couple who adopted Owen, who has autism. They talk about their adoption journey and how Owen has settled into their family and thrived.

And in other news:

'I didn't feel strong enough' The Telegraph
Brilliant animated account of a dad whose daughter is born with medical problems and diagnosed with cerebral palsy.

When it comes to disability, is it better to look 'different' or 'normal?'
BBC Ouch podcast
Adults with disabilities talk about pressure to improve their appearance. Should a woman with a prosthetic eye wear dark glasses? Should a woman who is a double amputee wear skirts? "It's the people staring that really gets on my nerves," one says.

Guinea pigs are autistic child's best friend The New York Times
When playing with guinea pigs at school, children with autism spectrum disorders are more eager to attend, display more interactive social behavior and become less anxious, according to a series of studies.

Anesthesiologist trashes sedated patient—and it ends up costing her
Washington Post Listen to the degrading comments two doctors and a medical assistant make about a patient who's receiving a colonoscopy. The conversation was recorded on the patient's phone. Shocking and makes you wonder.

For disabled people like me, cuts spell the end of independent living The Guardian
Penny Popper, a British writer and performer, writes about the end of England's Independent Living Fund, which covers the cost of attendants.

Comedian with a stutter gets the golden buzzer from Howie Daily Best Like
A baseball injury damages a young man's vocal chords, causing him to stutter. He performs as a comedian on America's Got Talent.

Esme can read The New York Times
The mother of a child who can't speak, point or sign writes about realizing her daughter can read.

Texas to require cameras in special-ed classrooms Disability Scoop
"We heard testimony from students with special needs and parents whose lives have been forever changed by mistreatment in the classroom," state Sen. Eddie Lucio, Jr., who authored the legislation, said.

Is special education racist? The New York Times
"Black children face double jeopardy when it comes to succeeding in school," write two researchers. "They are far more likely to be exposed to the gestational, environmental and economic risk facts that often result in disabilities. Yet black children are less likely to be told they have disabilities, and to be treated for them, than otherwise similar white children," according to a new study.

When doctors become patients A Better NHS blog
Amazing accounts of doctors who become patients and how it transforms their practice.

New theory suggests disability played critical role in our evolution Daily Mail
British anthropologists argue that disability is what made us human, promoting our social, empathetic and flexible natures.

TDSB school asked my autistic student not to attend graduation Heart Learning Centre blog An after-school program writes about a kindergarten child with autism being asked to come in later one morning so that she misses graduation ceremonies.

Holly, Alex and Jaxson 1,000 Families Project
A gay couple begin the adoption process with one request: They want a child with Down syndrome.

Doctors go online for medical information, too Wall Street Journal
When a child has a rare condition, doctors look to online groups for families who can shed light on their experience. Our BLOOM contributor Barb Farlow is referenced in this article, as is a paper she and two doctors published in Pediatrics on the experience of parents of 272 children with Trisomy 13 and 18.

Horrified family finds daughter's photo on prenatal screening ad CTV
Without the Canadian family's consent, a photo of a girl with Down syndrome that had been posted on her mother's blog was used in a building-size banner advertising a Swiss prenatal test to detect Down syndrome.

Why isn't it the right time for NEO Kids? Northern Life
An eye-opening editorial about the obstacles a proposal for a pediatric hospital in Greater Sudbury is facing, despite widespread parent and medical support. Includes disturbing statistics about the health of children in Northern Ontario vs the Ontario average.




 
 

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Last call for the BLOOM survey

Complete our BLOOM survey by June 30, and you'll be entered in a draw to win a framed Stephimal by autistic artist Steph Coveart (above).

The joy that bounces from Steph's drawings of cats and dogs—each coloured in bright, bold markers, floating on white space and with quirky facial expressions—has attracted the attention of artists and animators.

Thank you to everyone who's already taken five minutes to tell us what they like, and don't like, about BLOOM, and how we can do better. Help us push our respondent voices higher! Louise

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Two dads adopt a son with autism

Here is the first video in A Family Like Mine, a new BLOOM series covering diverse families raising children with disabilities. 

Meet Rob and Dave, two dads who adopted a son with autism. 

“We have a nephew with special needs and we’ve seen what they’ve had to go through and fight for,” Dave says. “We thought it was the right thing to do.”

Initially their son was fascinated with the movement of trains, doors, locks and washing machines, but as he’s grown comfortable with his new family, his ‘stimming’ behaviours have faded. He’s doing well at school after receiving behavioural intervention (IBI) therapy.

Rob and Dave wondered whether having gay dads would be challenging for a kid who already had autism, but he’s thrived.

You may remember this BLOOM post Rob wrote about their adoption. This video will be captioned this week. Hope you enjoy!

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Two moms, one ill baby, and the best care

My dear friend Janis Purdy is speaking today on a SickKids panel celebrating PRIDE week. Here she writes about parenting a child who was born with serious medical problems and the hospital care—often kind and empowering and sometimes challenging—she and her partner experienced as two gay moms. Thank you Janis! Louise

By Janis Purdy

I remember all the people and intensity in the room when Jonny was born. I remember him being whisked away from me and wondering if I would ever hold him.

I remember touching his hands and feet. I remember his omphalocele looking bigger than his body. I remember his curved spine, his yellowish pallor and his old-soul eyes.

I remember his isolette, his PICC line, his NG tube, the IV in his head, his wound dressings twice a day. His daily dose of medications. His failure to thrive. I remember infections and green bile and TPN.

I remember a spontaneous bowel perforation. I remember emergency surgery. I remember praying desperately. As Anne Lamott writes, all my prayers were either “Help”, “Please” or “Thank you.”

I remember six long months in the NICU.

I remember two open heart surgeries, chylothorax, chest tubes, pain in his eyes, and a hernia surgery. I remember three months in the cardiac intensive care unit. I remember the NJ tube, low tone and the discharge plan.

I remember all the good, smart and kind people. I remember the sharp looks, the insensitive comments, the mistakes.

I remember leaving Sick Kids. I remember being so happy and so scared at the same time.

I remember emergencies and admissions and back and forth and in and out for a year. I remember feeds every three hours around the clock and dressing changes and meds that got stuck in his tube and I remember being very tired.

I remember his abdominal closure surgery. I remember a nurse in the surgery recovery room bringing him a brand new Thomas the Train toy.

I remember little friends who got better and some who didn’t.

I remember how much Jonny always loved his big brother. From the moment they met. And I remember his remarkable will to live and his incredible spirit of life and love.

I remember OT and PT and speech and language and oral aversion. I remember being completely humbled by Jonny’s strength and endurance.

I also have different memories that relate to today’s topic: Insights and Ideas for Creating an LGBTQ Positive Space at SickKids.

I remember growing up being taught that lesbian and gay people were dangerous to children. And that trans people were mentally ill. I remember a lesbian who lost custody of her children when she came out. I remember hiding and covering up and feeling ashamed.

I remember a nurse in the NICU asking if Diane and I were married. I remember that opened a door to a lovely conversation.

I remember a nurse practitioner in the NICU asking me, of my older son, “Does he call you mommy or mama?” It showed a wonderful level of insight.

I remember introducing our children’s biological Dads to the staff, and their grandparents, and their aunties and uncles of all genders and being amazed at how nice they all were in trying to understand and support our unconventional family.

I remember the receptionist calling Diane, Mr. Purdy once. She was so apologetic when she realized her mistake. Like red-faced and tripping over herself. I felt sorry for her. I began to call Diane Mr. Purdy after that as a joke.

I remember an older nurse sharing that she was gay too. That was nice and it helped us feel understood and comfortable. I appreciate that she shared that confidence in us.

I remember a younger nurse discussing the finer angles of lesbian motherhood with us.

I remember a GI doctor we’d never met before. We were not having a good day and he walked into our room without knocking, as they are want to do. “I’m Doctor X” he said looking between us. Then he asked, “Who is the mother?” I responded “We both are.” He seemed irritated. “Who is the BIOLOGICAL mother?” Instant tension. My partner tried to diffuse it with a joke “It sounds amazing but we both are!” He looked at her without smiling. “Who are you and why do you need that information?” I said. Sound of horns clacking. “There are many medical reasons we need to know who the biological mother is.” That was a bad start. Hard to get over a bad start.

I remember a social worker in the cardiac ICU asking us the kindest, most thoughtful questions about our family situation. She was concerned about whether we had enough support going home. Gender was not an issue.

I remember sometimes feeling angry at the world and dark and ready for a fight.

I also remember feeling so lucky and thinking, if anyone can handle this, we can. With our age, our experience, our families, our friends, our financial security, our good health… we’re going to be able to handle this. I remember thinking, Jonny chose the right family. And feeling so grateful.

I remember meeting moms and dads from all over Ontario, from little towns here and there and some who were very religious and some who had never met a lesbian before but it was all okay because here we were all surviving and hanging in there together. It was all about the kids and the diagnosis and the treatment and the prognosis.

I met people at SickKids, and made friends here, with people I’m not sure I would have crossed paths with in any other way. And that was good for me.

I remember a doctor here, someone I deeply respect, and will always love in a kind of hero-worship way, telling me that he thought Diane and I were great parents. I think I burst into tears, which would have been disconcerting for him, but that is how much I appreciated what he said.

When you grow up thinking you can’t or won’t be a parent, or you’re holding onto an ancient fear that other people will judge you, or dislike you before they’ve met you, or when you’re used to fighting and you’ve got your dukes up for no good reason, those little compliments and small indications of care, and empathy, well they can blow up your well-constructed walls and bring down all your defenses and really soothe your soul. Which is a really good thing for any parent of a sick child.

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Courage Project: Focusing on the positive

By Louise Kinross

This is a picture my son took at Cherry Beach as we sat on a log.

Dogs are drawn to him. Because he's so small, he's afraid they may jump on him and knock him down.

In keeping with our series about courage, I was reminded of an interview I did with Dr. Jacob Towery, a psychiatrist at Stanford who's found cognitive, and other types of therapy, useful for parents of kids with complex disabilities. I just went back and read it and it's so packed with useful, practical information I want to print it out.

Dr. Towery uses techniques that get at common distortions in the way we think that can lead us to feel anxious and depressed. Here's a small excerpt about how we can choose to focus on what our kids can do, instead of what they can't do.

"There's probably a certain amount of sadness that is appropriate and healthy for a parent of a child with multiple challenges," Dr. Towery says. "To know your child will have to struggle more than other children do is unfair. Sometimes parents don't give themselves permission to grieve the loss of the healthy child they expected and therapy can provide the space to experience that sadness. But once you have grieved, continuing to tell yourself 'My child will never do anything' might be an overgeneralization. Is it really true that your child will never do anything? What if we focus on what the child can do? Perhaps the child can make eye contact now, but didn't used to be able to. Maybe your child can smile and generate a smile in you as a parent. Maybe they can give another person a hug and make that person feel good. It's all about what we focus on. We can focus on the 100,000 things that a child can't do, or on some of the things that they can do, and we will feel differently depending on our focus."

My son does all kinds of practical things this year that he couldn't do before (or, at least, we thought he couldn't do them and didn't expect him to). Things like getting into the van on his own and doing up his seatbelt, which is hard for him to reach, doing up buttons (he never wore shirts with buttons due to an aversion), and brushing his teeth (he has an unusually small mouth that makes it hard to get a toothbrush in). The other day he came in really sweaty and hot, and I said "You should change your shirt." And lo and behold, 10 minutes later he came down with a new shirt on. That made me smile because he wouldn't have taken that initiative in the past.

My son is always making progress, but sometimes it's easy to dismiss it because it's not what other people his age do. 

Which reminds me of something Dr. BJ Miller told us in an interview. Dr. Miller was a successful Princeton sophomore when he was injured in a prank with some buddies that left him a triple amputee. He's now a palliative care doctor.

When asked what the greatest challenge was in coming to terms with his new life with disability, he said "how to see things differently. 

"By pulling me out of my anything-approaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up. I was given a way to let myself off that hook and be my own frame of reference...

"When I talk to school kids they’ll say 'Don’t you miss having two hands?' and I’ll invariably say 'Yea, I do, but don’t you miss having three hands?' Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. 'I don’t sit around missing them anymore than you sit around missing three,' I’ll say. This frame-of-reference issue is a powerful thing."

If we're constantly focused on what our child can't do because of their disability, we can't delight fully in the things they can do.

The other day my son and I went to see my mother, but she wasn't at her condo. We drove over to a nearby park where we found my mother "guerrilla gardening." She no longer has the large gardens that she tended to while we grew up, so she's planted a garden around a log in a nearby park. 

My son and I were excited to see her in the distance. I called to her, and my son, who can't speak, also attempted to holler, which made me smile. She was very surprised to see us. When we got up to the garden my son asked in sign what each of the flowers were. 

Then a couple of older women my mom knows walked by and said hello. Ben shook hands with them. Then he spontaneously gave each of them a hug. It wasn't what someone his age would have done, but it was heartfelt and heartwarming. 

I'm writing this down because so often I slip from focusing on these good and wonderful things. I let my thoughts drift to what can't be. Using Dr. Miller's analogy, it would be like him walking around constantly wishing he had two hands again. Ludicrous, as he said.

Now that we're trying to figure out my son's life post school, I wanted to share a couple of links. Connectability is a website run by Community Living with some great resources for people with developmental disabilities. This one lists all of the day and recreation programs available, at a cost, in Toronto. I know people have very strong opinions about day programs because they are segregated. But we are looking into all opportunities. This is a list of post-secondary options. And this Facebook group Ontario Developmental Services Housing Task Force has families and professionals looking at innovative housing options.

We'd love to run stories from other parents who are looking for courage in the face of a challenge with their child with disability. If interested, please e-mail me at lkinross@hollandbloorview.ca

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The Courage Project

By Louise Kinross

Sometimes I feel like I can't find the courage I need. Most recently it's happened when my son, who has severe disabilities, left the school system at age 21.

At a time when most parenting 'gigs' are winding down, it feels like mine is ramping up, as I try to help him carve out a meaningful life. My son's disabilities, particularly his lack of speech and behaviour issues, make it hard for him to fit into a typical employment or school setting. We didn't get the funding we'd hoped for from the government, or the planning support we've been on the wait list for. And I didn't save for this time. As he grew up, I always felt we had to spare no expense in therapies and activities and products and camps that might promote his development as well as make him happy. 

So we need to get creative ourselves. We'll be working with someone to help us develop a support network to bring people to the table who can help us figure out what a good life for our son would be, from activities or employment or volunteer work to friends.

It's not easy asking for help, as all parents of kids with disabilities understand. So I thought I would start this column called The courage project. Maybe we can encourage all of our readers to share situations where they feel lacking in courage. Perhaps I can tell our story as we go alone, and others can share their stories, and we can support each other.

The medals above are some of my Dad's, from WWII. He lay communication lines between the frontlines and headquarters through all of the major battles, and landed with the allies in Normandy on D Day plus 1. He was 19 at the start of the war and served for over six years.

I think I'm going to take one of his medals and put it on a chain and wear it.

Let me know if you'd like to share a story about parenting that calls for courage, particularly if you are struggling to find it.

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5 things a doctor wishes parents knew about 'disabled' kids

5 things a doctor wishes parents knew about 'disabled' kids

By Dr. Peter Rosenbaum

1. The most important word and idea we can share with parents—from the beginning of their journey into “childhood disability”—is DEVELOPMENT. Children—including those with disabilities—change and develop; as parents we develop as our kids grow and change, and as a result we usually become more skilled as parents. Of course some children’s development will likely always remain compromised and therefore slow.

2. Parenting is a dance led by the children! If we can be attentive to our kids and adapt to their emerging skills and abilities, we parents will probably do okay!

3. Be ready to brag about your “disabled” child every day. Professionals spend too much time on problems, and what kids can’t do. Forget about conventional milestones and the “normal” way of doing things. Look at what’s working, what you like, and what makes your child special! This is important for every child, regardless of the extent of their impairments.

4. Don’t blindly accept what professionals (or even your family members) tell you your child will NOT be able to do. Professionals are not good at predicting the future of an individual child (though we wish we could) and anyway, the kids never listen to what we say!

5. Parenting any child is a marathon, and not a sprint. Keep at least one eye—and often both eyes—on the big picture, and the future. This helps us to plot a course to adulthood. That helps us help our children to become as competent, self-assured and self-confident as possible, regardless of how well they can do this or that activity or skill.

Dr. Peter Rosenbaum is the inaugural recipient of Holland Bloorview’s Medal of Excellence in Childhood Disability. Peter is co-founder of the CanChild Centre for Childhood Disability Research at McMaster University and was chief of medical staff here at Holland Bloorview from 1997 to 2000. He revolutionized the health model for children with cerebral palsy by developing the Gross Motor Function Classification System, which is used worldwide.

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Does disability make us human? Or is it a threat?

By Louise Kinross 

In the last couple of days three stories on social media jumped out because they portray such different, opposing, pictures of what disability means in our culture.

Last night CTV reported that Swiss genetic lab Genoma used a family photo of a child with Down syndrome belonging to a Canadian family in a building-size banner to promote their prenatal test for diagnosing Down syndrome in a fetus.

The photo was used without consent or knowledge of the Canadian family.

Genoma says it acquired the image legally through a stock photo company and is taking legal action against them.

It's both horrifying and not surprising.

Horrifying that a parent would find a beloved photo of their child in an ad suggesting that a child like her should be aborted. And not surprising in that a company is trying to illustrate in its ad the reason for, or 'benefit,' of their test.

What is surprising is that a company wouldn't think twice about purchasing a stock image of a living, breathing child and using it to promote public questioning of the worth of children like her.

It reminded me of when a Duke University researcher contacted me last year to let me know that my son's rare genetic deletion was now on the list of disorders identified by microarray analysis of a fetus’s DNA. I wrote about how that felt, a bit of a knock-out punch, here.

Earlier this week The New Family posted this story about two Canadian moms who set out to adopt with one request: they wanted a child with Down syndrome. This is how one of the moms, Holly Graham, explains it:

"Rewind 25 years to when I was a little girl. I had a best friend named Mandy who just happened to have Down syndrome. She was fun, loving, friendly and magical. I always knew Mandy was different, I didn’t know why, and it didn’t matter. I just knew that I loved every single thing about Mandy. One day I came home from school and proclaimed to my mom that I was going to have a baby just like Mandy one day!"

And now Holly and her partner Alex are the proud parents of Jaxson, age 1, who has Down syndrome.

On the one hand, you have an entire industry devoted to preventing the birth of a child with Down syndrome. And on the other, you have a couple who choose to parent a child with Down syndrome.

And finally, there was this piece published a couple of days ago, which I read this morning, about British anthropologists who suggest disability itself is what made us human from an evolutionary standpoint, promoting our social, empathetic, flexible natures. This line of thinking fits with the views of French geophysicist Xavier Pichon, who helped create the field of plate tectonics.

As Xavier told BLOOM in an interview: "What I discovered is that the major difference between human societies and other societies of living beings is that humans have a capacity for empathy, which leads them to take care [over the long term] of those who have been affected by major suffering and handicaps. I was very impressed by studies of skeletons of 100,000-year-old humans which demonstrated that these people took care of heavily handicapped people [for decades]. This is most remarkable as these people were nomad, hunter-gatherers who lived in groups of 20 to 25 people at most."

So where does the truth lie?

Earlier this week my team met with Dr. Peter Rosenbaum, a former chief of medical staff here who heads up the CanChild Centre for Childhood Disability Research at McMaster University. Yesterday Peter, a developmental pediatrician and children's rehab researcher, was awarded Holland Bloorview's Medal of Excellence in Childhood Disability.

He noted that medicine has swung too far to a biomedical, science side focused on "cure," forgetting that the most important quality in a health professional is human "care."

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Parents of ventilated kids risk own health due to sleep loss

About half of the parents and professionals who've filled out our BLOOM survey so far have asked for more stories on families raising kids with high medical needs. Here is a start!

By Louise Kinross

As a nurse practitioner who’s supported hundreds of families bringing home a child who uses a ventilator, Krista Keilty knew these parents struggled to get a good night’s sleep.

But no one had ever measured the difference in their sleep compared to that of parents raising children without health issues.

So the SickKids researcher conducted a study that used a wristwatch-like device to measure sleep and wake activities over a week in 42 parents of kids who use medical technology and 43 parents of kids who don’t.

“We found the parents of kids with medical complexity sleep 40 minutes less per night,” Krista says. “When you think about that difference over the span of six years, which is how long the families had on average cared for their child, that’s three times as many sleep-deprived nights or 208 less full nights of sleep in that period. That’s a large sleep debt you can’t get back.”

In addition to sleeping less each night, the sleep of parents of kids with high medical needs varied widely from night to night. “Their sleep was all over the place. It means they might get to sleep at a reasonable hour, which is 11 p.m., one night, but then not get to sleep till 1 or 2 the next night, and then get up at a different time each morning.”

Twice as many parents of kids using technology were identified as poor sleepers, waking up more and not feeling rested in the morning. They also had three times as many nights when they got less than six hours of sleep.

“These caregivers are needed by society and by their children to be healthy and well and capable of caring for them for years to decades at home,” Krista says. “Yet the sleep deprivation they get predicts these parents will experience negative downturns in their health much earlier than other adults.”

Lack of sleep puts these parents at risk for heart disease, obesity and pain and may compromise their immune system, Krista says. “We also know sleep deprivation over time influences mood—possibly causing depression and anxiety—and the ability to complete tasks that require quick judgment and decision-making. The data would suggest the parents of kids with medical complexity are at increased risk of [car] accidents.”

The study found that three times as many parents of kids with medical complexity “had a level of depressive symptoms that means they may have clinical depression,” Krista says. “When making study home visits I had a number of conversations with family caregivers who would talk quite openly about how difficult it is for them sometimes to live with this ‘blue’ mood they have on a day to day basis.”

The reasons for sleep loss in parents of kids using technology requires further study, Krista says. “They can be categorized into parents who are so vigilant they can't sleep even when they have the chance, or have anxiety or worries or poor sleep habits themselves, or poor sleep habits in the child that result in them waking up and needing to be consoled. The care needs can also be so high that parents are up every two hours on a good night to turn and reposition their child. There are also environmental factors, such as the number of nursing hours families get and how the technology itself may intrude on sleep—for example, waking parents when false alarms go off.”

The nursing hours families in the study received ranged from zero to 100 hours per week, with parents getting about two nights of coverage a week on average. “This means that for at least five nights a week they are managing on their own.”

Not only do parents of kids using medical technology need more sleep, Krista says, but they need better quality and more consistent sleep.

In addition to measuring sleep and wake activities in the parents and children, the parents in Krista’s study answered questionnaires about depression, sleepiness, fatigue and quality of life.

The degree of sleep disturbance experienced by parents of kids with medical complexity may interfere with parents’ ability to work outside the home and their motivation to make stay connected to friends, Krista says. The parents of kids with technology in her study were more likely to be single, underemployed and have a lower household income.

Krista says the study is a first step in finding effective sleep interventions for parents of kids using medical technology. “In order to plan an intervention, we needed to quantify and characterize the sleep problems in this population so that we could think about what measures to look at in future, what treatments to try and how big a sample size would be needed.”

Previous studies have always relied on parent self-reports about sleep habits, which aren’t reliable.

Krista has already launched a second study to assess Ontario parent and home care providers' ideas about the causes of sleep disturbance and what interventions may remedy them. Results from the second study will guide future research to test a specific intervention.

Krista Keilty is nurse practitioner and project investigator with the Centre for Innovation and Excellence in Child & Family-Centred Care at the Hospital for Sick Children. She is also a fellow in Innovation in Pediatric Homecare and a CIHR post-doctoral fellow in Sleep and Biological Rhythms.

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The trouble with rehab 'miracles?' They ignore luck

BLOOM is always looking for parents and professionals to write for us or be interviewed. This piece by occupational therapist Veronika Lukacs came to us because Tom Nantais, a former Holland Bloorview researcher, told me she'd have great insights to share. Thanks Tom and Happy Birthday! Veronika (above) with Russell Winkelaar helped build 62 StopGap ramps to improve access to stores in London, Ont. this weekend. Woo hoo! Louise

By Veronika Lukacs

Every so often I read a local news story about someone's experience in rehab following a devastating physical injury. Nine times out of 10, the story makes me angry.

I'm a newly graduated occupational therapist in a happy relationship with a handsome man named Russell Winkelaar, who sustained a T6 spinal-cord injury at the age of four from a head-on collision with a drunk driver. Russell is paralyzed from the armpits down and uses a manual wheelchair to get around.

Prior to studying OT and meeting Russell, I spent two years looking at the effects of mass media through a master of arts degree at Western University. People are surprised to learn about my media background, but I think it complements occupational therapy practice well.

A person's cultural environment can be a barrier to meeting rehab goals, and it can also shape what kinds of goals a client wishes to pursue. What we see in the media—be it a news article or fictional TV program—gives us clues about the meaning our culture ascribes to life with disability. It also tells us what rehab outcomes the mainstream considers successful. Many of the stories I read are similar and have become cliché.

One popular one goes like this: Young, athletic man in his early 20s breaks his back pursuing an extreme sport. He sustains a spinal cord injury, and doctors tell him his chances of walking again are non-existent to slim. The young man goes through gruelling and intense rehab sessions. Through hard work, personal strength, and perseverance, the young man defies all odds, proves the medical team wrong, and walks again.

I call this the "miracle story." The miracle story often features a person with spinal cord injury, but there are variations that focus on people with congenital disabilities or other acquired disabilities.

The miracle story bothers me because "success" or "overcoming disability" is always attributed to personal strength and willpower. That's great for the person who walks again, but what does it say about the person who doesn't? The miracle story burdens people by making them feel like it's their fault if they don't recover. It suggests that people control their rehab outcome through positive thinking.

The miracle story is misleading. It's usually vague about the type of injury the person sustained. Often times, the individual had better chances of walking again, but the story conveniently left this out.  

Yes, rehab can improve one's chances of re-gaining mobility, but there's also a great deal of luck involved, depending on the type of injury or disability. People don't like acknowledging the luck factor in rehab outcomes. And the reality is that no two people's situations are the same

Unfortunately, I've seen people in rehab programs read these stories, compare their progress and feel they didn't measure up.

In addition to demoralizing patients who won't walk again, the miracle story influences how loved ones support the person. Family members ask me about these stories and share them in hopes of raising the client's spirits and motivation. When this happens, the person who doesn't make a full recovery not only feels their own disappointment, but that they've somehow let their family down.

The miracle story serves as a reminder that our culture sees wheelchair use as undesirable. Walking is the ultimate goal, even though for many people it isn't attainable.

"Everyone wants what's best for their child, but we're stuck in the mentality that getting back to the way you were before is best, as opposed to learning how to adjust," my partner Russell says. "Instead of waiting for the child to walk again, and being depressed for a few years or in denial, parents need to build their child a ramp."

I'd like to see more varied news coverage of the rehab process to balance out the negative effects of the miracle story. Why is this story held up as the ultimate success? What about the person who never walks again, but explores new passions and contributes to their community?

While "being positive" has its place in rehab, a distant hope of returning to an old life may not be beneficial. Full recovery and walking need not be the only goals, and people in rehab need constant reminders that people with disabilities can lead happy, fulfilling lives.

As an occupational therapist, it's difficult to advocate for changes to how the media covers rehab. It's also challenging to balance inspiring hope in clients while remaining realistic about the likely outcomes. In fact, it's often impossible to know for sure what rehab outcomes are realistic!

What we can do is address the problems with these stories with clients and families. We can explain why the experience of one person in a news article is just that—the experience of one person.

Russell says that changing society's views from the ground up is essential. "If close family members won't accept that their loved one won't walk, how is society supposed to?"

People need strategies to help shift their perspective on what it means to live with a disability. That's why peer support from those who have gone through it, and counselling programs that address psychosocial need, are invaluable.

I'd like to see future programs directed specifically at assisting family and friends in how to best support their loved one.  "Disability is always going to exist," Russell says.  "It can happen to anyone and no one wants to talk about it. That's why it's so terrifying. If people could see that having a disability isn't the end of life, they'd be a lot less afraid of it."

Please send your story ideas to lkinross@hollandbloorview.ca

Don't forget to fill out our BLOOM survey for parents, professionals and other readers.

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'What we saw was value'

"Incompatible with life? What we saw...was value, beauty, potential, our precious daughter."

Listen to New Zealand photographer Rachel Callander talk about how her daughter Evie inspired her travels across the country to meet with families with children with chromosome differences. The result is a photographic art book called the Super Power Baby Project. 

The real deficit, Rachel says, is not to be found in children with genetic conditions, but in a culture that fails to embrace their humanity. This woman rocks her talk.

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Share your thoughts on BLOOM

Help us BLOOM brighter by taking a few minutes to fill out this survey.

Respond by June 30 and we'll enter you in a draw for a framed Stephimal by autistic artist Steph Coveart (above). You may remember this piece we did on Steph, who has a business selling her art.

At BLOOM with Holland Bloorview, we're dedicated to bringing you the latest views and news on parenting children with disabilities and disability issues, culture and more. We appreciate your time and contributions to BLOOM—whether via reading, commenting or sharing—and want to ensure that we're providing the best experience for you and your family.

Hop over and tell us what you think. Thanks! Louise

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Why can't you just forget 'that thing?'

This is an excerpt from Lisa Bendall's latest book Magic Moments: Twelve Little Stories About Disability, Family and Fairly Normal Life. Lisa is a Toronto writer who lives with her husband Ian, who has quadriplegia, and their daughter Emily. Her blog www.50gooddeeds.com shares inspiring ways to make the planet a better place. Thanks Lisa!

By Lisa Bendall

“Do you have a driver’s licence for that thing?”

If my husband and I had a dollar for every time we’ve heard that, we would have our mortgage paid off. Paid off? Heck, we wouldn’t even have had to take out a mortgage in the first place.

“You’re a pretty good driver in that thing!”

My husband uses “that thing”—namely, a power wheelchair—for his mobility. So of course his manoeuvring skills are not too shabby. After all, he’s had a couple of decades of practice at it. Usually, that’s the kind of response he will muster, accompanied by a weak, patient smile.

“I know what it’s like—my father’s in one of those things.”

Oh? And his lessons in wheelchair etiquette went right over your head?

“That’s a pretty nifty way to get around, eh? I wish I had one of those things!”

You’re looking for a shortcut? Allow me to give you the starting push.

Anyone with a wheelchair user in the family is familiar with openers like these. We hear them so often we could write a top-10 list for David Letterman. And we probably all have a ready store of sarcastic retorts—although, admittedly, we usually put them to use only in our imaginations. At least, I do. Thus far, I have not been able to summon the nerve to reply to a “So, what happened to you?” with a “Nothing—but hey, what happened to you?”

Deep down, we know they mean no harm. They’re just looking for a way to make conversation, and for some reason my husband’s wheelchair seems to them a much more fascinating icebreaker than something so mundane as the weather. In truth, though, I think we could be trapped in a blizzard, and the person trapped with us would still be asking my husband how fast “that thing” can go. And they wouldn’t be asking so he could go for help.

This summer we visited my husband’s uncle and realized that the new weather-stripping he had installed at the front door since our last visit had transformed a tight passageway into an insurmountable one.

As we made this discovery, and realized we would need to change strategies and take the back door, my uncle-in-law’s neighbour came bounding across the street. Rather than introduce himself, the first words out of his mouth were: “My mother’s in one of those things!” And then, as though he had just uttered the secret password at an exclusive club, he proceeded to wrench the wheelchair away from me and struggle against the impossible doorway.

Believe me, it took a few minutes to wrench it back—he was stronger than me.

I wish the general public could learn from their children. Kids are so much easier to deal with. They have yet to learn that individuals with disabilities are anyone other than ordinary people with really cool accessories. The most frequent greeting we get from children in public is not “You’re fast in that thing!” or “A kid in my class is in one of those things!” but: “Hi.”

Hi… Simple, yet classy. I like it.

I suppose we’re a little further progressed than we used to be. It wasn’t that long ago when people with disabilities didn’t even get to the point of exchanging words with children. At least those days, when parents yanked their children out of a wheelchair user’s path faster than you could say “Elephant Man,” are becoming less frequent. Disability is not as contagious, I guess, as it once was.)

I only hope the public gets comfortable approaching people with disabilities sooner rather than later.

Personally, my tolerance will last only so long. Otherwise, the next time someone asks my husband if he’s “always been in that thing,” my inquiry about what they’ve “always been” just might not be printable.

 

 

 

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Disability doesn't just take, it gives

By Louise Kinross

Might Have Been by Rob Rummel-Hudson is a post every parent of a child with a disability can identify with.

You'll read it today on Support for Special Needs, and your heart will begin to ache.

Because you'll hear Rob, who wrote Schuyler's Monster: A Father's Journey With His Wordless Daughter, describing you, and your thoughts about what might have been had things been different for your child.

It's a place you don't like to go, Rob notes, and it's filled with guilt and shame, not the least of which is that it's tied up with every parent's deepest fear that somehow they are responsible for their child's disability.

Rob's piece is so honest and wise.

There's this part: "I think about what her voice might sound like, and the amazing things she might have to express with that sweet voice. I wonder if she would have a Texas accent (she totally would, y'all) or if her speech would be peppered with "ums" and "likes." I wonder what kind of writer she'd be if her understanding of language and the world were more complete...Would she be driving a car now? Would she have a boyfriend or a girlfriend? Or a close and equal friend at all, for that matter?"

Then he goes on to describe Schuyler's cousin, who "is younger by two weeks. In many ways, he provides an unspoken, mostly unacknowledged benchmark by which her alternate self might be tracked. We almost never discuss it, even with each other, but with every milestone he achieves, with every academic advancement and musical accomplishment, with every typical mile marker he passes, we feel it just a little. There but for the vindictiveness of God goes she."

Yup, you may be thinking, I've done that too, compared my child to a relative of a similar age.

But here's where things get interesting.

Rob's been on this path long enough that he's hit on a truth about parenting kids who are different. "Might Have Been isn't just an a**hole," he writes. "It's a fiction."

Because our kids' differences don't just take things away from them, they are generative. "It changes everything about how she thinks and how she processes the world around her," he writes. "Those different paths are hard for her teachers and friends and even family to understand, and impossible for us to travel. But they are her paths, and they are beautiful."

This reminds me of a presentation I gave to our research summer students a couple of weeks ago. It was called "What do you see?" and it's about how what we see in children with disabilities is a choice. We can choose to focus on what isn't (on what a child can't do in a typical way) or we can choose to focus on what is, and what is, in a human being, no matter what their ability, is immense.

In the case of his daughter Schuyler, Rob writes: "Schuyler is, by a country mile, the happiest human being I know. And it's not because she doesn't know any better. It's because she does. She gets the beautiful parts of the world, while I often only see the pain and the cruelty that it holds for her and for us all, I guess. Schuyler holds on to the aspects of the world that she cherishes, and she tries very hard to throw away the rest."

I think Rob has hit on the beauty and value and completeness that emanate from a different path in life. We see these qualities in our kids, ones that we cherish and marvel at, and that we struggle to articulate to the outside world, qualities that can't be separated from our kid's unique way of being in the world, which includes disability.

Hop over to Rob's Might Have Been and get ready for some exquisite writing.

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Adapting toys to help kids get around

Every day this week we'll release one in a new series of short Holland Bloorview videos that convey the work we do and the spirit we bring to it. Enjoy!

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Can a robotic bear help kids in hospital feel better?

This video today on The New York Times looks at whether a teddy bear robot can help reduce anxiety, pain and loneliness in kids who are hospitalized.

The prototype, called Huggable, is being developed by Boston Children's Hospital and M.I.T.'s Media Lab. The hospital is financing a 90-person study to see if the robot, currently controlled by a remote worker, can capture a child's emotions by tracking physiological changes in a bracelet the child wears.

According to the related article, the robot, which will eventually operate on its own, "could be a soothing distraction and simultaneously capture data and information from patients, which would be fed to hospital staff, improving the continuity of care."

When I read about the research measuring physiological changes in hospitalized kids I immediately thought of this study done at Holland Bloorview several years ago. It found that children with severe disabilities, including some who can't communicate physically or verbally, react physiologically when watching a performance by our therapeutic clowns.

I understand that no hospital can afford to have therapeutic clowns or child life specialists available in the way that a robot bear could potentially be placed in each child's room.

I know robots are seen as the future, for example, in assisting seniors with physical tasks and keeping them company.

But I couldn't help feeling sad when I thought of the robot companion for our inpatient kids.

There is an interesting discussion going on at our Parent Voices at Holland Bloorview Facebook group with some very good points about the value of such a high-tech bear. If you haven't joined our group, please hop over and consider joining. Parent Voices is a place for parents to share practical advice and resources on parenting kids with disabilities.

What do you think of Huggable?

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When humour, stories are the best medicine

By Louise Kinross

When Emma Evans (right) couldn’t sleep in the middle of the night after a bone and muscle-lengthening surgery, the best medicine was a Holland Bloorview nurse who told her funny stories.

“I had very bad heel pain,” Emma, 14, recalls. “I wasn’t sleeping great and I didn’t respond well to high-intensity meds. It was a tricky situation. My nurse Katie Hauer (left) was able to help me calm down and not focus too much on the pain by telling me funny stories about herself and asking me about my interests. This distracted me from difficult pain and, since we knew more about each other, it was easier for me to communicate and feel more comfortable.”

Emma says that nurses who took the time to know her interests and tell her a little about themselves best helped her forget the pain. “Talking about the pain—about where it was and what it felt like—made it worse. It was hard to describe. But if we mixed talking about the medical situation with non-medical conversation and humour, I was able to stay calm and feel better.”

Emma says she liked Katie’s approach because Katie would acknowledge how tough the pain was, but then get her talking about something else.

Katie, who works on the complex-continuing care unit, says the way she connects with each child is different. “You have to figure out what that person needs. Some children might not want to hear silly stories or want to joke around. It can be challenging when you first meet a patient to really find a connection. It takes time and patience and thinking through what each individual needs. I really like working here because you have an opportunity to enter into a really intimate space with a person and you have to bring yourself to it. It has to be authentic, particularly for a teen who will sense it if it isn’t genuine.”

To get to know clients and parents, Katie asks a lot of questions. “I always try to pull the patient out first. Who is this person? What is their sense of humour? What do they like to do? What are they comfortable with or not comfortable with?”

Talking with parents about their unique expectations is important, Katie says. “Everyone is so different. Some parents want to do as much as they can for their child and don’t necessarily require as much support as others. I like to say: ‘How can I support you? What are your needs?’”

Katie says nurses and parents need to work as partners. “It’s so important to work together. There has to be a mutual understanding of each of our roles, and how we can best support the child together. Grace needs to flow both ways between parents and nurses.”

Emma says that sometimes it can be challenging to feel comfortable with your medical team when there’s so little time for non-medical interactions. “That’s why I feel it’s important to spend time talking to the patient about their interests and, if you’re comfortable, to share a bit about yourself.”

Creating relationships “is the biggest part of how I care and nurse,” Katie says. “Relationships need to be valued and honoured. When Emma was in a lot of pain, I could have met all of the standards as a nurse by giving her the prescribed interventions, like pain medications. But I needed to take more time to figure out how to relate to Emma in the midst of what she was experiencing. I have always appreciated the power of stories—how therapeutic they can be, and how they help us relate to one another in very real ways. With Emma, it was simple: I was 14 once and thought about what would have helped me if I was in her shoes.”

Emma says that even when nurses do medical tasks with her like taking vital signs or changing bandages, “using humour, stories or conversation makes the situation better and more fun for everyone.”

During her most difficult times, “Katie’s humour was the best strategy that worked for me,” Emma says.

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Seeing 'as if for the first time'

By Janice Bennink

Lately I started wondering how my parenting may have added to the challenges of my son’s anxiety disorder, which goes hand-in-hand with a primary diagnosis of Asperger’s syndrome.

He is a 21-year-old adult, first diagnosed with autism at age seven. Back then, I spent my days consumed with learning about all things autistic—attending workshops and meetings, poring through books and staring at my computer for hours on end—seeking out anything that would secure his happy future life. The information implied that we could “fix” or shape things to come, perhaps turning him into a superstar with autism like Temple Grandin or Glenn Gould.

Parents of newly-diagnosed children with autism are submerged under an avalanche of advice and information about ABA and IBI, social skills and social stories, sensory diets and gluten-free diets… Stop me now, please!

No wonder I woke each morning in a mild panic, feeling there was work to be done. I brought that sense of mission to my son while overseeing each and every step of getting ready for school for 15 years. After drop-off, I imagined challenges he faced that I could not witness firsthand. Always wondering if I would get “the call” from the school. Then back to the job of plugging “Asperger’s” into another Google search.

For all of my son’s gains through baby steps and giant strides towards adulthood, I still flash back to moments when I broke some cardinal rule of good parenting, and feel that surge of regret over something I can never undo.

I don't like looking back—too many “should haves.” Looking forward is something I try to avoid, however unsuccessfully, with its scary list of things I should be doing. Being in the here and now seems to be the least punishing of choices.

These days, I let information through selectively by email. Browsing an e-newsletter, I noticed a research study call for participants in a mindfulness therapy group at York University for youth with autism spectrum disorder and their parents. Perfect timing, since my son's anxiety has stalled his plans for post-secondary education.

I am a newcomer to mindfulness—my notion was some kind of Zen-like practice that would grant us moments of peace in a busy day. During the intake, I was told that we will both be trained in techniques that might help us handle stress. This sounded promising. If we were both calmer, it just might rub off on one another.

Our group included eight parents, an encouraging young psychologist/facilitator and a graduate student. We were part of a research project called MYmind in the department of psychology.

Creaking down to cushions on the floor, I closed my eyes.

“In this moment...” a voice began.

Deceptively simple meditations started with the sound of a bell, and we were asked to simply bring our attention to this breath, or this sensation, this smell, this sound. Guided gently by our facilitator’s instructions, we attempted to observe instead of overthink, and focus only on ourselves—right here, right now.

For me, this is not as easy as it sounds. It was like trying to drink from one hole in a lawn sprinkler.

We were handed a single raisin and asked to mindfully observe each step as we hold, smell, taste, chew and swallow. It is a numbingly slow exercise during which I wondered how learning to eat this way might help me lose a few pounds. It also demonstrated how some behaviours are so routine that they are done without thought, on auto-pilot.

Am I parenting the same way I am eating? Going through the motions because I've done it for so long?

During sessions, we practised allowing thoughts to drift in and out, like clouds. We tried to listen without judgment to each other and discussed scenarios that generate parental stress. Members of our parent group, with splendidly diverse personalities, acknowledged and shared auto-piloted responses to their children teetering on the brink of adulthood. We all understood.

Our facilitator listened with gentle suggestions to observe and accept rather than react. This seemed profoundly frustrating at first, for one who has been taught to take advantage of “teachable moments” as they occur. With my son I am always listening, noticing those moments, and giving him timely cues so he can learn to “generalize appropriate social behaviours,” words that come alarmingly easily to me.

No wonder he is anxious, I thought. He has been living an ever-present social skills workshop led by his mother.

If mindfulness is learning how to deepen our attention and awareness of ourselves, it brings with it an awareness of the effect that we have on those around us. We were told that mindful observation of our children means the practice of seeing them as if for the first time. Perhaps seeing what a visiting alien might see, then reacting without judgment.

Gradually, I am trying to turn back the clock to a time when I knew nothing of ASD, DSM, SLP and other now habitual acronyms. I am re-learning how to listen, observe and not always try to “fix.” Not because I don't want to, but because it's just not always helpful for either of us.

We were also told that mindfulness means being compassionate to yourself. One of my handouts is a letter-sized page with very large type reading: Don't Should Yourself. It is hanging in plain view in my workspace.

In this moment… my son and I are both doing just fine.

Resources:

"Mindful parenting is the ongoing process of intentionally bringing moment-to-moment, non-judgemental awareness as best one can to the unfolding of one's own lived experience, including parenting. Cultivating mindfulness in parenting starts with self-awareness." 

~ Jon Kabat-Zinn, Founder, Stress Reduction Clinic at the University of Massachusetts Medical School

Mymind research project at York University
Research Institute of Child Development and Education, University of Amsterdam

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'Making friends' an unexpected rehab gift, parents say

By Louise Kinross

Jimena Ortiz and Ricardo Menendez say one of the greatest gifts of their son Sebastian's inpatient stay at Holland Bloorview was the friends he made.

Because of life-threatening seizures, Sebastian, 16, wasn't able to go out with school friends in the past. "We didn't allow him to go anywhere alone so he missed trips with school," Jimena said on Friday as they were packing up to leave. "He felt like he was alone, and different from the other kids. His self-esteem was very poor."

Sebastian came to Holland Bloorview in March after brain surgery to remove an area thought to be causing his seizures.

"We are so blessed to be here," Jimena said. "He had physio, speech therapy, school, occupational therapy and so many groups where he got to meet other kids: a teen support group, the lunch club, and a cognitive group. The staff helped him work on social skills and looking people in the eye and he's going home with so much confidence. He's made three very good friends. He says he's not alone anymore and he has friends that understand him. The experience in the hospital gave him an attitude of being more understanding of other kids and of their parents."

Sebastian didn't have a seizure for six weeks following his surgery, but did have three shortly before he was discharged. "The big goal was that he be free of seizures but we are generally feeling more optimistic. Sebastian has a hope to be normal: to be able to drive, go to sleepovers and parties and trips with friends."

Jimena says she benefited from getting to know other parents of children who were hospitalized here. "I've made some good friends too. It's been an unbelievable experience to see parents with a pure love for their kids."

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