When there are no medical answers

By Louise Kinross

"This is not my fault."

That was the key message I picked up on resilience when I read this Facebook post by Lean In author Sheryl Sandberg after her husband died suddenly and tragically last year. Adam Grant "told me to ban the word 'sorry,'" Sheryl writes. "To tell myself over and over, This is not my fault." 

I was trying to apply it to how I felt after a visit with my son to a surgeon didn't go as I had hoped. My son's curved spine, which developed suddenly over the last year, is worse but the surgeon doesn't want to operate. Because it's high up, if he straightens it it will move higher up, meaning he would probably have to fuse his spine up the neck to correct it, so my son would lose all movement there. There are also serious, serious risks.

But there is no way to prevent the curve from worsening. So when I got out my little blue leather notebook, with the gold tinted paper, and read through the prevention strategies I hoped might work, they were all discounted.

No, correcting his leg length difference caused by a previous surgery wouldn't help because it's not the main cause. No, wearing a brace wouldn't be useful in this case, even though it's helpful when teens develop idiopathic scoliosis. In our case, it would just make our son's muscles weaker. What about if he wore it at night? No.

No, there isn't a different kind of surgery that could be done. And no, even though there was a cheery picture on the wall showing a teenaged girl before and after her fusion surgery for idiopathic scoliosis, that was not the same beast we were dealing with. It didn't have any relevance to our case.

He would do the surgery if he thought he could help my son, but he didn't. He couldn't promise that it wouldn't get worse, and I didn't have the nerve to ask "Will it get worse?"

Which left me back at: "What are we going to do?" I started scanning the pages in my notebook again. But all I could see was #1, the leg-length difference question. I knew he'd said it wouldn't help, but I couldn't stop myself and asked again. 

I was in desperate mother mode.

I never thought that at age 22 my son would be facing a new health crisis. For some reason, when he was little, I imagined we would have everything uncovered and figured out, as well as was possible, by then. 

I'm angry at his syndrome, a bone disorder, angry at the limits of medicine and angry at my limits as a mother. 

"There wasn't anything I could have done to prevent this, was there?" I ask his dad. I've been trying to get someone in the adult system to see him about his spine since last year. 

Then I remember that when he had his hip surgery one of the surgical fellows told me he had soft bones, like an elderly person. Other people with this syndrome have developed a curved spine, in spite of what their parents did, or didn't, do.

I hate it when he has a bad pain day and moans and I don't have a good answer when he asks when it will be better. 

I tell myself I have to be flexible. I have to adapt. They will see him again in a year. In the meantime, I have to get used to not knowing what is going to happen, and not being able to do anything about it.

When I want a break, I can walk outside and sit under these giant trees in Spiral Garden, the ravine area that is an arts camp at Holland Bloorview. 

"It's not my fault."

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A new way of teaching health students about genetic conditions

FRAME is a series of videos on children with genetic conditions and their families talking about their lives in general and from a medical standpoint. 

They were developed by Positive Exposure as a way to educate health professionals on conditions like Marfan and Down syndrome in a way that promotes the beauty and humanity of the participants. 

The goal is to get away from the "patient as a specimen" model of medical literature.

Positive Exposure is looking for health professionals and families to view the videos and give them feedback.

After viewing the videos, health professionals are asked to fill out this survey.

Families, people with the conditions and others in the community are encouraged to fill out this survey. 

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Grandma gets UK retailer to adapt clothes for easy access

By Rita Kutt

My grandson Caleb had a very difficult start to life, which included seizures.

Last year when he turned three, his mum Zoe and I started looking for clothes to accommodate his feeding tube and nappies. Until then, we’d been able to buy clothes from the high street stores and supermarkets here in England.

To my dismay, after looking in stores and online, I found nothing available for his age and size. I tried parenting websites for advice, but soon realized that we could only buy them from specialty catalogues.

Parents and carers told me they had to buy from the United States, as even with postage it still worked out cheaper than buying from the local catalogues. Others were using expensive dressmakers to alter their children’s popper vests and sleeping suits by adding material so that they would still fit.

Disability catalogues charge more because their products are specially made. The cost of a popper or snap vest was about $30 in the catalogue, compared with the $2 vests (up to size 3) we could buy in our regular stores.

How would my family afford this new clothing? Caleb’s mum had given up work to care for him. And the family had to pay for private physiotherapy for Caleb, who is still not able to crawl, sit, stand, walk or even have full control of his head. The cost of this new clothing was a huge worry.

Why couldn’t the less expensive clothing, now available up to size 3, be made a little bit bigger, with extra material?

I decided to campaign for more affordable clothing in larger sizes and asked Marks and Spencer if they would help. I chose them because they're a global company and that meant more children and families would benefit. They have dedicated websites in Australia, New Zealand, Canada and the United States, and they deliver free when you spend $50. They also deliver to over 30 countries at varying cost. Marks and Spencer have a great reputation for quality and are a respected company that started out in Leeds, which is my home town. I thought if they were able to order them by the thousand, then surely they would be priced lower.

I wrote to their customer services’ team, and they promised to pass my e-mail onto their buyers. They quickly came back to me and said that they were interested in my proposal and were hopeful they could help.

Soon they were sending sample suits for Caleb to try. My daughter-in-law Zoe has been able to give very positive feedback and has made suggestions about how the clothing can be tweaked. For example, the neck area was a little too large in one item, so they made the opening smaller.

Zoe asked if they could also do styles for older children and Marks and Spencer got in touch with the disability charity Scope UK for advice from families. Scope arranged for parents from their online community to trial sample sizes with their children and send in feedback too, which has all helped to shape the products.

The new range of clothing, launched in February, is more than I ever hoped for!

Initially I just asked for popper vests for older children. Marks and Spencer have gone above and beyond by also making sleeping suits, long and short sleeve items, all-in-ones, and all with easy accessibility for nappy changing and tube feeding. Two of the items have snaps across the tummy for a feeding tube. They are made for children aged 3 to 8 at the moment, with the age range being extended to 16 later this year.

The older children’s styles will be age-appropriate. The clothing is great quality and affordable, and ranges in price from $8 to $15.

I have to admit that a month or two after contacting Marks and Spencer, I had a little wobble and thought, “What if other families don’t feel the need for these clothes?” I asked the company if I could tell people on my Facebook page about what was happening and they said yes.

In a few days I had over 30,000 responses! There were friend requests from strangers and messages from around the world, including India, Spain, Portugal, New Zealand, Australia, the United States, Indonesia and Ireland. All wonderful messages of encouragement that made me realize I had done the right thing, and that thousands of children and their carers would benefit.

People also shared ideas of their own, and it convinced me that we should be pushing ideas to other businesses. After all, if we don’t let them know what’s needed, then how are they going to help?

I decided to set up a new facebook Group entitled Marks and Spencer and Me: Special Needs Clothing so that everyone could put forward their thoughts. We have over 6,000 members and are still growing. Anyone wishing to be kept updated please join. The retailer is in the process of producing more age-appropriate garments for youth up to age 16 and are making some improvements to the existing line.

We're hopeful that this much more affordable clothing for Caleb will be a weight off his parents’ minds, and will help them continue with the private physiotherapy he so needs. Caleb has profound and complex needs. I know lots of families will have their own individual expenses to accommodate their children’s needs. So this should also help them too.

The attention to detail and quality of clothing is what Marks and Spencer do best. This new adapted line has been so popular that many items have sold out, but they’re being restocked quickly. The demand has been unprecedented, which is heart-warming for me.

Thank you Marks and Spencer, for making this happen.

I am one proud Grandma.

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That's not a problem. It's a power!

By Megan Jones

When acting, Jessica Thom never stays on script. In fact, she’s neurologically incapable of it: the London, U.K.-based performer has lived with Tourette syndrome for decades. Her tics cause her to experience muscles spasms and to randomly speak words thousands of times a day. Onstage, this means nothing goes quite as planned.

In 2014, Jessica began performing Backstage in Biscuitland with actress Jess Mabel Jones. The play uses puppets, props and audience participation to celebrate and demystify Tourette’s. Since then, it’s been performed in the U.S., Canada, Norway and Bosnia, among other places.

The show is just one facet of Touretteshero, a project that the 36-year-old co-founded with longtime friend Matthew Pountney. On her Touretteshero blog, Jessica writes about her life with the neurological condition and catalogues her tics, inviting people to make artwork—images or poems or music—in response.

Here, she weighs in on growing up with special needs, making theatre more inclusive, and why laughter is an activist’s most powerful tool.

BLOOM: Backstage in Biscuitland is random, unconventional and sometimes quite absurd. How did the play come to be?

Jessica Thom: The roots of the show are in the difficult experiences I’ve had accessing live performance. In 2011, for example, when I was attending a comedy show, I was asked to move to a sound booth because of the noises I was making. We’d met with the performer beforehand, he’d explained my Tourette’s to the audience, but despite all that planning, I got singled out.

As I sobbed in this sound booth, I promised myself I would never go to the theatre again. It felt like an experience that I couldn't access. But I was lucky to have friends and family who showed me there was another way. So eventually I decided to take to the stage—the only seat in the house I wouldn’t be asked to leave.

BLOOM: In which ways does the play fit into your broader project, called Touretteshero?

Jessica Thom: Like the play, the purpose of the site is to share my experiences with Tourette’s, and to celebrate the creativity and humour of the condition. We’re interested in drawing attention to the invisible barriers that exist within our society that prevent people from being included. Lots of exclusion happens because people don't experience difference. If something doesn’t directly affect your life, it can be easy not to give it much thought. That’s why disabled people need to speak out about barriers.

BLOOM: You’ve spoken in the past about the need for relaxed performances. How does Backstage in Biscuitland fit that model?

Jessica Thom: Backstage in Biscuitland is also about our belief that making art inclusive makes it better art. All our performances are relaxed performances—they welcome people who might find it difficult to follow conventional theatre etiquette. People are free to move in and out. We also build audio description into the dialogue for people who can’t physically see the set, and try to offer captioned or interpretive performances whenever possible.

Finally, before a show, audience members can participate in 'touch tours.' We allow people to touch the props we use onstage. It’s useful for someone who is blind, but also for someone who’s on the autism spectrum.

BLOOM: You often say that incorporating disability will enhance the theatre-going experience? Why is that?

Jessica Thom: Being inclusive will make theatre experiences more dynamic for everybody. If you take my show as an example, every staging is different because I’m literally incapable of doing the same show twice. Jess Mabel Jones’s job is to keep us on track and not let my tics make the play an hour of rambling about lampposts. Left to my own devices I probably would. But my tics keep the show interesting.

BLOOM: You’ve got some interesting outfits as well. What’s with the superhero persona?

Jessica Thom: The persona is a way to reframe my tics not as my problem but as my power. They let me do things that neurotypical people can’t. I’m constantly colliding strange ideas. It took me a long time, but I was eventually able to see my unusual neurology as a valuable source of creativity.

BLOOM: Right, let’s talk about that process. What was it like to grow up with Tourette’s?

Jessica Thom: When I was younger my tics were much less noticeable to other people. But they were there. At school I would save tics up and then wriggle about frantically in the bathroom. Or sit on my arms and legs to give myself pins and needles just so I could feel a different sensation in my body. As a kid, I didn't have much space to talk about my disabilities. There was a lot about them I didn’t understand. I thought I was bad or evil.

Generally though, I was well-supported, and I can still vividly remember moments when adults were understanding when they could have responded poorly. When I was very young, I whipped a basketball in my teacher’s face during gym class. It was an uncontrollable action. He ordered me out of the room straight away, but as soon as I told him that I hadn’t meant to throw the ball, he accepted my reasoning and let me rejoin the class. I thought that was an incredibly brave decision.

BLOOM: As a child with a disability how did it make you feel to be listened to?

Jessica Thom: It made what was a frightening situation manageable. I think children have an innate openness to being inclusive of different types of people. It’s important that that’s nurtured. We adults can’t let our discomfort be transferred onto the young people we’re raising or supporting.

BLOOM: So kids really are the future then.

Jessica Thom: A few days ago I wrote about my friend’s daughter, Ruby. Her mom had told me that at bedtime recently, Ruby discussed how parks could be built to better suit kids who used wheelchairs. She naturally understood the social model of disability—that we need to focus on changing environments, not people—at age four. If a preschooler is able to brainstorm ways for everyone to be able to participate, why on earth do I spend so much time explaining this concept to adults?

BLOOM: How did you get to a point where you felt you could accept and even celebrate your tics? I think many young people struggle with that.

Jessica Thom: As my tics started to have an increasing impact on my daily life I found myself having more conversation about Tourette’s with my friends and family. During one conversation with Matthew, he described my tics as a 'crazy language-generating machine.' That idea really captured my imagination. I was able to see value and creative potential where I’d only ever seen something to be ignored, minimized and dismissed. A conversation has the potential to spark change.

BLOOM: But that doesn’t mean there aren't still challenges.

Jessica Thom: Of course not. My tics now affect my ability to walk, and I use a wheelchair most of the time. That means I have a simple, visible disability. When I was walking independently my tics were visible but they were often interpreted as me being drunk or dangerous, and people often responded with fear. These days, people are more likely to be supportive or empathetic. But they’re also more likely to behave in a way that’s condescending—they make assumptions about my ability to work or think independently.

BLOOM: I’ve read online that you say the word biscuit 16,000 times a day. Is that true?

Jessica Thom: Yes! We didn't count for a whole day, obviously. Years ago my brother-in-law counted how many times I said biscuit over five minutes and then multiplied it. It gave us a good laugh.

BLOOM: Speaking of which, a big part of your show is finding humour in your tics. What makes self-deprecation a valuable tool?

Jessica Thom: Laughter can make us feel empathy; it can make difficult situations more manageable. My life would be innately more challenging if I didn't find humour in some situation.

Often, people are afraid of using jokes, especially linked to disability. But I think it’s important to consider where laughter sits. There are so many jokes about Tourette’s out there anyway. I remember seeing a video of somebody pretending to have the condition. It had 30 million views. I just thought, “Wow 30 million people are really missing out. Because the reality of life with Tourette’s is much funnier than this.”

BLOOM: And people are probably more receptive to your message if they feel like they’re in on the joke.

Jessica Thom: Right. I think laughter and humour can be used to get people to think about things they might find difficult. We tend to switch off if we think we’re getting a lecture.

BLOOM: What advice do you have for kids with disabilities who might be feeling isolated?

Jessica Thom: Learn about the social model of disability as soon as you can. I don't think there’s any age where a child is too young to be introduced to the idea that it’s not about fixing people it’s about fixing environments. Learning I have the power to change my environment to fit my needs has been an important part of my journey as a person with a disability.

BLOOM: And what about parents?

Jessica Thom: Help your kids build positive memories—they can be protective. We focus on events for young people because by building positive memories, children have something to draw on if times get tough. Building a resilience in children with disabilities is an act of resistance. If kids with disabilities have high expectations for themselves and for others, we’ll have a much more inclusive society. Damaged confidence is much easier to prevent than it is to repair.

Photos by James Lyndsay 

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BLOOM story sparks CTV piece on prosthetic designs

We shared this story in our last BLOOM e-letter about an innovative company in Victoria, B.C. that's blurring the line between prosthetics and design with these stylish covers.

Avis Favaro, medical correspondent at CTV National News, says she saw our story and followed up with this broadcast piece. Click above and check out these funky limb covers live.

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A dad pedals his son 600 km in search of a cure

By Megan Jones

It seemed to come out of nowhere. Only in retrospect, Andrew Sedmihradsky says, did the signs of his son's disease become clear. It started after Max (in cargo bike above) learned to walk. Andrew, along with his wife, Kerri, noticed their son would fall often—and hard. Still, being first-time parents, initially, they didn’t worry. 

The falls didn’t stop, so the pair took Max to see a few different doctors. But when none of the professionals seemed too anxious about their son’s tumbles, the couple, who lived in Australia at the time, decided not to overthink the situation.

Then, in June of 2013, a daycare worker who had noticed Max’s lack of balance approached the family, insisting they bring the youngster to a doctor one more time. Soon after, Andrew took a few hours off work to bring his son in for an appointment with a pediatrician. Even that day, he felt unconcerned. We’ll get this over with, then do something fun for the rest of afternoon, he remembers thinking.

But after examining Max, the doctor quickly suggested the boy may have muscular dystrophy. The family was referred to a nearby hospital, and a few days later, a blood test confirmed the Andrew and Kerri’s worst fears: Max had Duchenne muscular dystrophy.

Duchenne is a life-limiting genetic disorder that causes muscle weakness because the body can’t make a protein called dystrophin. Duchenne weakens the legs and hips, and eventually the heart and breathing muscles.

“It was just devastating. It was impossible to sleep,” Andrew says “We had to listen to podcasts just to take our minds off of what was happening.” For a while the couple felt inert with shock, anxiety, grief. Finally, sick of feeling helpless, Andrew insisted the family get out and do something fun. They went to a museum in Melbourne. It felt good to get out of the house.

“All we’d done up to that point was wait” Andrew says. “Although it hadn’t been very long, I felt it was important to get up and fight this.”

Last year, since moving to Canada, the clan started Max’s Big Ride, a charity bike ride to raise money and awareness for Duchenne. All proceeds go to Jesse’s Journey, a registered organization committed to finding a cure for the disease.

For the past two summers, Andrew has steered a carrier bike (with Max—now five years old— in the front car, naturally) 600 km from Ottawa to their current hometown, Hamilton, Ont. Kerri, Andrew's parents and Max’s baby sister, Isla, have followed along in a van, delivering food and drinks, providing emotional support, and sorting out accommodations.

The family has also hosted Max’s Big Climb, a competition where professional cyclists collect sponsorship and race up a steep hill in Dundas, Ont.

Together, both events have garnered donations from places like France, Japan, the States and the U.K., and so far, the family has raised upwards of $100,000. They’ve also attracted the attention of a few prominent Canadians: recently, Max received a letter from Prime Minister Justin Trudeau, and this summer, he met with Toronto Mayor John Tory.

“It seems a bit surreal,” Andrew says. “Last year I created a website for Max’s Big Ride in my basement. I wasn’t sure if it would take off. And now the leader of our country knows about it.”

Andrew says the event was inspired by the bike rides the family used to take when they lived in Australia. Max loved sitting close to his father as he pedalled around. A long ride seemed like the perfect way to get attention for Duchenne, while providing ample time together. They keep each other company on the road, Andrew telling stories and Max talking about his hopes for the future (he says, for example, that he wants to start a band with his family).

On top of successfully raising money, Andrew says he’s found comfort and hope along the road. As they pass through cities, they’re regularly greeted by fire departments or groups of volunteers. Sometimes, they’re given food or other gifts—everyone wants to chip in. Most inspiring is when Andrew meets parents whose own children have muscular dystrophy. Often, he says, they insist on donating to Max’s ride.

Since the past two rides have been such positive experiences, Andrew says he hopes to do another next year to continue getting their message out. In particular, he hopes to get the attention of more politicians. As more experimental drugs become available, he says, families will need government support to cover costs.

***

While Andrew and Kerri are educating Canadians about Duchenne muscular dystrophy, they’ve yet to talk to Max about his disease.

Max knows his muscles are weaker than other kids,’ Andrew says, and that’s why he takes medication. But he hasn’t asked about an underlying cause.

They've decided to cross that bridge when they come to it. It’s an attitude Andrew tries to apply broadly while parenting a child with disabilities. “I try not to think about the worst-case scenerio, or fantasize about the best-case scenario,” he says.

He recommends that parents whose children have disabilities give themselves breaks, and that they reach out to others for support whenever possible. For him, the key to staying hopeful while continuing to address the difficult realities is to take things one day at a time. “I try to focus on the here and now, because that’s what I have the power to change.”

I think that there’s hope,” he says. “I wouldn't be doing this if there wasn’t.”

Follow Max's family on their blog.

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Who were the disabled people killed in Tokyo?

Last night I saw a social media link to a story that included photos of people killed in recent mass shootings.

I clicked on it, thinking for a second that it might include photos of the 19 adults killed in a Tokyo home for people with multiple disabilities while they slept in the early hours of Tuesday Tokyo time.

It didn't.

A quick search showed that when 49 people were killed in a gay nightclub in Orlando on June 12, their photos, names and details about who they were as people, appeared in media two days later.

Do you think there's a news outlet that covered the Tokyo massacre that has attempted to secure photos of the victims as a way of telling their stories?

I don't think so. 

To be honest, the social and mainstream media reaction to the deaths has been muted relative to coverage of other mass killings. 

Yesterday, science writer Emily Willingham suggested why that might be the case in this Forbes piece: This Is What Disability Erasure Looks Like.

Willingham notes that the suspect, who had worked for years at the home he targeted, made no secret of what he intended to do, even warning the country's parliament back in February.

"I envision a world where a person with multiple disabilities can be euthanized," he wrote, outlining his plans to "wipe out 470 disabled" people at night time, when staffing was low. He tried to pass the letter to the speaker of the lower house of Japan's parliament and was hospitalized for two weeks as a result.

But the facility that housed the vulnerable people he threatened to kill, Willingham says, appears to have not been adequately warned and prepared.

"What if his letter had instead referenced his intention to kill children or teachers or restaurant-goers?" she asks. "I'm guessing that authorities would have paid a lot more attention to it."

The reason, she suggests, is that as a culture we are quick to accept messages that suggest people with disabilities are less than human. Messages such as: "Better dead than disabled."

The reason we post photos and tell stories of innocent people killed in massacres like this is to assert their humanity.

I wonder how far news outlets will go to do that in this case? I, for one, am waiting.

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