A practical guide for parents of disabled children and their doctors

By Louise Kinross

Many of you followed Julie Keon on her blog. Julie just released a revised edition, with new content, of her book What I Would Tell You: One Mother's Adventure with Medical Fragility. The book covers all Julie has learned since her daughter Meredith was born with a severe brain injury 14 years ago. One of the best parts of the book, for me, was the chapter about befriending grief. Julie asked me to write a review, so I did:

What I Would Tell You is a candid, riveting account of what happens when you're told your precious newborn will not do any of the things you anticipated. Julie leads you through what to expect: how you might feel, how others might react and most importantly, what you can do to thrive and find meaning.

This book is packed with compassion, practical wisdom and life-affirming insights. It's a must-read for parents, family and friends. Anyone seeking courage and resilience in the face of catastrophic events will benefit from it. 

What I Would Tell You is an indispensable guide for doctors and nurses and others who work with children with medical fragility. It illuminates the kind of care that empowers and uplifts, and the kind of care that can break down and further traumatize.

Congratulations Julie! This book should be on medical school curriculums.

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Amy Wright, founder of Bitty and Beau's, is CNN's hero of 2017

Two of Amy Wright's children have Down syndrome— Beau, 12, and Bitty, 7.

In 2016, Amy opened Bitty and Beau's Coffee Shop in Wilmington, North Carolina. Knowing that most adults with intellectual disabilities don't have jobs, she wanted to show what people with the same disabilities as her kids could contribute. The shop now employs 40 staff with disabilities like Down syndrome, autism and cerebral palsy (watch Matt's story in the video above). The shop's tagline: More than a cup of coffee, is followed by messages like 'Changing the way people value other people.' The shop was so successful that a second location is opening in Charleston, South Carolina. All proceeds go to Able To Work USA.

Amy was named 2017 CNN Hero of the Year for her advocacy. The award is determined by online voters who chose Wright among the top 10 CNN Heroes finalists.

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Talking to kids about weight: What works and what doesn't?

By Louise Kinross

Last month the American Academy of Pediatrics released a policy statement on how children with obesity are stigmatized, and how health professionals can help reduce that stigma when talking about weight.

This month, Holland Bloorview launched an interactive casebook on how to have positive conversations about weight and health with children, including those with disabilities. The book focuses on healthy lifestyles and is written for health professionals across disciplines

It brings together the latest research, video stories from clinicians and families, simulations and resources.

BLOOM interviewed Amy McPherson, a Holland Bloorview scientist who authored the casebook with knowledge translation specialist Christine Provvidenza and post-doctoral fellow Laura Hartman. A multi-disciplinary team also worked on the project and input came from experts across Canada.

BLOOM: In what way is weight an issue for children?

Amy McPherson: One in three kids in Canada has overweight or obesity. Kids with disabilities are two to three times more likely than their peers to experience this.

BLOOM: Why do you say kids ‘have,’ as opposed to, ‘are’ overweight?

Amy McPherson: It’s person-first language. We’re trying to get across that obesity is a disease, like diabetes, so something you have and not something you are. This is the language recommended by the Canadian Obesity Network.

BLOOM: What is a casebook?

Amy McPherson: A casebook helps bridge the gap between what we know and what we do in health clinics. It combines research evidence, experience and resources in one place and provides practical clinical guidance to heath professionals who work with children.

BLOOM: Why is a casebook needed?

Amy McPherson: We know that health-care professionals who work with children report that they don’t feel confident having discussions about weight. They don’t feel like they have the training to bring up these issues. They’re often worried that they’ll ruin a therapeutic relationship they have with a child and family by offending parents and children, or will cause self-esteem issues in the child. That speaks to the weight bias in our society. Why would having a higher weight be any different than having blue eyes? We associate negativity with weight, and so we’re reluctant to mention it.

BLOOM: What should professionals know about higher weights?

Amy McPherson: One of the main messages in the book is that obesity is not a personal choice. It’s complex, and affected by many factors. It’s not a case of ‘eat less and exercise more.’ If it was that easy, no one would have obesity. Genetics influence weight, as does sleep and your metabolism and medication. When you lose weight, your body actively fights it.

We encourage professionals to talk about growth and health rather than weight and size. If they are tracking a child’s growth and they see a steep trajectory, that may be an opportunity to step in and talk about the impact of weight on health.

BLOOM: What are the key messages you want to get to professionals and families?

Amy McPherson: One is that before talking about weight-related topics with a child, ask for permission. First, make sure you’re in a private environment and the child feels comfortable. Ideally they will know the professional. If the child doesn’t want to talk about it, say ‘Okay, we’ll revisit it next time’ and ‘It’s always okay to come back and talk to me, or someone else, about it.’ We need to build rapport with families who might be sensitive about it.

BLOOM: What are other suggestions in the book?

Amy McPherson: To recognize the strengths of children and families and what they’re doing well. Almost anything can be made into a success, and can be used with the child and parents to motivate and engage them. Perhaps they made Tuesday a pop-free day. That’s awesome. Focus on solutions. Maybe they turned off the TV earlier than usual and played a game outside. Find where their strengths are.

BLOOM: How is the book different from reading a research paper?

Amy McPherson: We wanted to make it really practical so it could be used in everyday practice. To create the content, we held two workshops with researchers, clinicians, students, parents and youth. We wanted to make sure that people with different learning styles could benefit. So we include diagrams and videos. We have evidence-based research summaries in there but we break everything down. For example, we have six sentence starters for clinicians who don’t know how to bring up the topic. We have four simulations to spark conversation on what works and what doesn't. There’s a one-pager clinicians may want to stick on the wall.

BLOOM: I’m wondering if one of the reasons health workers don’t want to address weight is that there isn’t an easy answer in terms of treatment.

Amy McPherson: Weight management in all children has a low success rate. We haven’t worked out exactly how to do it with typically developing children. With children with disabilities, there are extra complexities. We need more research to offer recommendations on weight management. But if we can get professionals talking about being active and eating well for your health, and not make it about weight and a number on the scale, that may have benefits. We want to give the message that the whole family can get involved in moving more and feeling good about their bodies.

BLOOM: What are next steps?

Amy McPherson: We’ve applied for Centre for Leadership funding at Holland Bloorview to do an implementation study. We’d like to work with a group of clinicians and trainees here to create a curriculum and a road map of ‘this is what you do to get this into your clinic.’ We would identify the gems that are immediately useful. We’d also like to target a number of clinics across Canada to look at the impact of using the casebook and whether it’s changing behaviour.

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A letter to myself

We just finished our first six-week narrative medicine group for parents. The group brought together nine parents for 90 minutes each week to work with BLOOM editor Louise Kinross and Shelley Wall, a biomedical illustrator and assistant professor at the University of Toronto.

Each session we addressed a theme related to the emotions of raising a child with disabilities. Participants would read excerpts from a graphic novel, memoir, poem or interview, then do a writing or drawing prompt, and discuss their work. 

The group was made possible by Holland Bloorview's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit children and families to life.

Below is a parent's response to this writing prompt:

Imagine that you've just received your child's diagnosis. Write a letter to your younger self, knowing what you know now, and share your best advice.

A letter to myself

Don't be alone in this. Make sure you have someone to be your cohort, your side kick, the bad guy, the good guy, whatever it is that you need to balance yourself out.

Find the agencies that say they know the most about the disease, the syndrome, the symptoms and visit them, online, in writing, in person. They have seen it all. Don't wait for anyone to come to you.

Always have a good paper trail and learn to file. File your contacts, every name, number and e-mail and put the paperwork in a file. There will be a day when you need to pick it all up in a hurry and start again.

Remember yourself. Remember your relationship, why you became two, and then three or more. Allow yourself and your partner to grieve differently, to feel differently than each other about the diagnosis and the outcome.

Do the research, try the therapies, but be realistic. Get to know the researchers, the scientists, the people behind the doctors. They want to make it better and need to see the thing they treat, to name it and see it. 

Spend real time with your other children. They will not be okay. You can not be normal, their life with you will not be normal, sharing your grief and tears with them is not always caring, it can be scarring.

When people say respite, take it, do it. Your child will have more people looking after them that sleep longer than you do, work less hours than you do.

If you think therapy is worth it, go do it, find the money, go with your gut, even if it does not fit with your partner's gut. There is nothing worse than getting to a point when you wish you could go back.

And always look after yourself as best as you can. Before you put others first, oxygen mask on you, then the next person.

Try and keep up whatever it was (before kids) that made you delightedly happy, even if you only do it once a year. Try not to do it alone. 

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A mask doesn't belong in a film about courage to be who you are

By Louise Kinross

I read R. J. Palacio’s book Wonder—about a boy called Auggie with a craniofacial condition that elicits stares and fear—back in 2012.

In an e-mail to the author on June 29 that year, I wrote: “I loved the book. In particular, I felt the recognition by Via (Auggie’s sister) of the two ways of seeing Auggie—the one of wholeness and beauty she saw in her mind’s eye vs. the picture of horrifying defects others saw, which she eventually gets a glimpse of—was very credible and real.”

I also wrote about the one part of the book that disappointed me. It happened on page 277, when Auggie’s mom refers to some Grade 7 bullies as “morons” and “imbeciles” and “cretinos.”

Reading that paragraph stopped me in my tracks. It hurt my head.

Why, in a book about accepting differences, would the respected and loving mother figure use labels for people with mental disabilities as put-downs?

Palacio responded on July 14, and apologized. “Please keep in mind that she was referring to the bullies who targeted her son, not kids with developmental challenges,” she wrote.

And yet, we know that slurs are cutting precisely because of their origins.

I don’t use the word “lame.” Decades ago, people would have used the term to describe the lop-sided gait of my son. I realize that people today mean “useless” in a generic sense when they say it. But the word’s origins made people who walk differently feel “other” and “abnormal.” That's where the word got its power and punch. 

I’ve heard many parents say they read the book Wonder with their kids, and I’ve always questioned what they said when they got to that part on page 277 about the morons, imbeciles and cretinos. Did they just read over it? Did they talk about why those words negate the main message of the book?

It would be like the mom referring to a bully as a cripple, or using a racial epithet.

I haven’t seen the movie Wonder. I know parents of kids with and without disabilities love it. I know it has beautiful messages about inclusion and kindness. I'm sure it's sparking important discussions about difference.

However, when I heard that the boy playing Auggie would spend two hours a day in makeup and prosthetics to approximate the face of a child with Treacher Collins syndrome—the condition Palacio based the book on—it lost its appeal.

When my son was a baby, I got involved with AboutFace in Toronto. They support kids with facial differences like Auggie’s, and their families. The variety of disorders that can affect the face, skull and neck is huge. According to a similar group in the U.S.—FACES—one in every 650 children is born with a craniofacial condition. Surely with those numbers, and with the resources behind Lionsgate Films, a boy with some kind of facial difference could have been cast to play Auggie.

According to this piece in the Daily Mail, Wonder's author Palacio “lobbied hard to have a child with Treacher Collins syndrome star in the film.”

The producers did fly in a boy called Nathaniel (with an undisclosed facial difference) for a screen test, the Daily Mail reported. But, as Palacio said in the piece: “Nathaniel had physical limitations, he was hard to understand, and if you have a $20-million movie, you have to make that call.”

Isn’t that the same argument that’s made every time someone gets turned down for a job because of their disability? It would just be too hard to adapt.

If producers were concerned about the child’s speech intelligibility, they could have used captions on theatre screens (what a great way to raise awareness about accessibility?). By the end of the movie, viewers probably would have gotten the hang of it.

Lionsgate uses this tagline for the film: Who gives you the courage to face the world?

In my view, the producers lacked the courage to turn the movie Wonder into the real deal by casting a boy living with a facial difference. It didn't have to be Treacher Collins. But it had to be a real facial difference.

Here’s how a couple of adults with craniofacial disorders and a parent wrote about the casting decision.

“It was devastating to realize that the directors involved with Wonder would rather cast a healthy, 'normal' looking child and put him in makeup and prosthetics, rather than cast someone who looked like me,” wrote Ariel Henley, who has Crouzon syndrome, in Teen Vogue. “I’ve gone my entire life without ever seeing someone with life experiences similar to my own represented on the big screen.”

Mike, who identifies as disfigured, and who I follow on Twitter @guysmiley22 tweeted: “It really, really, really makes me upset to see Jacob Tremblay in that mask. Like our disfigurements are a costume…As if disfigured people don’t exist.”

Sue Robins, a parent who has worked in family engagement in children’s rehab, likened the casting to hiring a regular child to play a child with Down syndrome, then putting them in intensive makeup to mimic the facial features associated with the condition.

There are plenty of child and adult actors with Down syndrome.

Doesn't imagining a child actor wearing a Down syndrome “mask” convey the absurdity of the Wonder casting choice?”

There’s no reason a child with a craniofacial condition couldn’t have played Auggie in Wonder. That should have been a non-negotiable.

Because authenticity, and words, matter.

Below is a photo of Simon Moore and his daughter Alice, who both have Treacher Collins syndrome. The British family was interviewed in the Daily Mail in 2015. The photo is by James Linsell-Clark. 

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Accepting emotions reduces depression, stress in parents

By Louise Kinross

Mothers of children with autism reported significant drops in depression and stress and improvements in physical health after participating in acceptance and commitment therapy (ACT), according to a study published in the journal Mindfulness today.

Twenty-nine Toronto mothers filled out questionnaires before and after the workshops where they learned to accept—rather than avoid—difficult parenting emotions, think more flexibly and commit to their values. 

The falls in depression and stress and gains in physical health seen four weeks after the first two parts of a three-session workshop were maintained at a follow-up eight weeks after the program ended.

The mothers had children with autism aged three to 22, and one-third had more than one child with autism.

More than a decade of research shows parents of kids with disabilities like autism have higher rates of stress and depression and more physical problems than other parents. But few studies have looked at interventions to help parents.

The new study was conducted by clinicians and parents from the Centre for Addiction and Mental Health, University Health Network, Surrey Place and Extend-A-Family.

The team concludes that ACT may be effective in improving mental and physical health in mothers of children with autism.

The groups were facilitated by one father and two mothers of children with autism who were trained to lead the intervention. BLOOM interviewed Lee Steel, who ran the groups with Kelly Bryce and Dr. Kenneth Fung.

BLOOM: What is ACT?

Lee Steel: It’s different from anything I’ve ever done, and I’ve been doing workshops for 22 years. Usually the focus is to get you to be a better parent by giving you another skill set. But ACT puts the focus on me, as a parent, and my own wellbeing. It’s about caring for the caregiver. It gives me a set of tools to go home and help me look after myself better.

At the core is the idea of psychological flexibility—so that as parents, you create a small gap between reacting and thinking about something in a more flexible way.

My son Eric is 26 now. I was feeling quite exhausted from years of advocacy. I was burning out, and reacting in ways I didn’t want to. ACT’s idea of putting the oxygen mask on myself first—rather than my child—was really applicable to me.

BLOOM: The paper lists one of the principles as acceptance.

Lee Steel: Yes, this is about being able to hold the emotions we’re feeling—including painful emotions—instead of avoiding them, pushing them down or saying ‘I shouldn’t feel this way.” It’s about holding everything with compassion. It’s accepting the way that I am, and the way that I’m feeling.

Sometimes it may be holding two emotions at the same time. Perhaps I want Eric to be independent and accepted and appreciated, but I feel really sad that it’s so hard to find services in the adult world, and to find employment that builds on his strengths.

So I simultaneously desire his independence and hold the thought that it doesn’t come easily, and I’m really sad about that. I don’t run away from those painful feelings.

I don’t do what I did when he was younger—which is to tell myself ‘I just need to apply myself more, work harder, make more calls, do more.’”

BLOOM: I can certainly relate to that feeling that somehow I can never do enough. That the world is telling me that my child is not enough, and that I’m not enough.

Lee Steel: The idea of acceptance is not only about my thoughts and emotions. It’s also about accepting my child the way he or she is. I don’t know what it’s like with other disabilities, but in the autism community, you can get a mixed message that if you work really, really hard, you can change the outcome of your child’s life. That’s an incredible burden.

I have grief now about how I can’t get all of those earlier years with my son back. Instead of slowing down and enjoying the moment, my focus then was on doing more and more and more, and working harder and harder and harder.

BLOOM: I think those ideas of ‘fixing’ disability run through our culture, which is very focused on self-improvement.

Lee Steel:  Parents get into comparing their child to this fantasy outcome that isn’t even real. And that negates who my child is and who I am. ACT gets you to look at 'Whose value is this?' It may be a value that's really strong in our culture, but would this be my value?

In ACT, we ask ‘Are we treating ourselves as a problem to be solved, or as a process to be lived and appreciated?’ One slide we show asks ‘Are we a math equation or are we a sunset?”

BLOOM: Another part of ACT is called cognitive defusion.

Lee Steel: That involves separating ourselves from our thoughts. I know in my experience as a parent, I often made a thought into a fact. In ACT, we learn techniques to help us hold our thoughts more lightly, instead of holding them as the truth.

ACT encourages us to see ourselves as an observer of our experience. The way Dr. Fung explains it is he holds one hand open, palm up, and puts the other hand inside of it. ‘We’re the holder, we’re not the content,’ he says. ‘Our experiences can come and go and change, but we’re the flexible holding self, rather than fusing with the contents.’

So instead of beating myself up because I wasn’t as patient as I would have liked, I can say: ‘Okay, I'm having that thought again. I’m tired. What do I need? Maybe I can go to bed earlier. Maybe I need to have a walk. Instead of judging and hurting myself more, I can be kind and compassionate with myself. If I’m compassionate with myself, that will ripple through to my child and to seeing everyone as doing the best they can.

Before ACT, when I was so hard on myself, it just made me more brittle towards other people.

BLOOM: I love that idea of being the container of our thoughts, not the thoughts themselves. How do values factor into this therapy?

Lee Steel: We do an exercise where each parent chooses four values that are important to them. Then they look at their values to see whether their actions are aligned with them. As a parent, this helped me reflect on aspects of my life that I’ve put on a shelf or forgotten about.

For example, let’s say one of my values is self-care. But I’m not doing anything about that. I’m putting everyone else first, I’m not getting enough sleep and I’m not eating right. ACT invites us to think of an action that would move us closer to that value.

We think of a value as being like a north star that can direct you. It’s not about goal setting. It’s about reflecting and asking, ‘If these are my values, are my actions moving me towards them, or away from them?’

BLOOM: Why was it important to have parents of children with autism lead the workshops?

Lee Steel: It gave us a 'short-hand' early on. We didn’t have to create safety because parents knew that I got what they were talking about. You’re not talking about a script, you live it, too.

BLOOM: It's an instant credibility. The study is about parents of children with autism, but I imagine parents of kids with any kind of disability could benefit?

Lee Steel: Yes, the overlapping struggles are the same, no matter what the diagnosis. The last group we did was a mixture of parents with children with different disabilities. My hope is that this work can influence parents at a much younger age than me. I wish I’d had it much earlier on.

To learn more about acceptance and commitment therapy, watch this excellent video or contact Dr. Yona Lunsky at Yona.Lunsky@camh.ca. 

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Reporting on Illinois group home abuse wins award

Barbara Chyette holds a photo of her brother Lauren Braun, who choked to death on a hamburger on a supervised group home outing in 2014. He had no teeth and was unable to eat regular food unless it was cut into tiny pieces. Photo by John J. Kim/Chicago Tribune

By Louise Kinross

'Suffering in Secret,' a Chicago Tribune investigation into the abuse and neglect of disabled adults in 3,000 state-licensed group homes in Illinois, won first prize in the 2017 Katherine Schneider Journalism Award for Excellence in Reporting on Disability.

The international contest, by the National Center on Disability and Journalism at Arizona State University, is dedicated to recognizing excellence in covering disability issues.

Tribune reporters Michael J. Berens and Patricia Callahan identified over 1,300 cases of documented harm since 2011 in Illinois group homes, or their day programs, for adults with intellectual and developmental disabilities.

At least 42 deaths were linked to abuse or neglect. People who were only able to eat food that was pureed or cut into tiny pieces choked to death on regular food—including a hamburger and a marshmallow. Others died from untreated bed sores and undiagnosed illnesses. One resident, accused of stealing cookies, was beaten to death by a caregiver.

Berens and Callahan found a wide range of mistreatment: residents were mocked and intentionally provoked, bound with duct tape, barricaded in rooms, left in soiled clothing and denied food. They also looked at resident-on-resident assaults, in particular in homes where people with severe physical disabilities were mixed with those with histories of violence. 

Illinois officials told the reporters that the addresses of the 3,000 group homes, which house up to eight residents each, are secret, as are records of abuse or neglect causing death. The reporters filed more than 100 public records requests, but state files were so heavily redacted and unreliable they had to dig up information elsewhere.

Caregivers, often unlicensed and untrained, earn an average of US$9.35 an hour, the investigation noted. Ironically, the reporters found the state saves US$135,000 a year when it places a person in a group home, instead of an institution. 

Illinois' group homes are not bound by staffing standards and other rules regulating nursing homes.

Berens and Callahan are to be commended for shining a light on the personal stories of the victims and their families.

They talk about their work in this fascinating panel. 

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I feel joy

The following is a found poem created this week in the narrative medicine group for parents at Holland Bloorview. A found poem is like a collage, but in this case brings together a line of writing each parent wrote in response to the prompt: "I feel joy when my child ..." In the six-week narrative group, parents write and draw about their emotional reactions to parenting children with disabilities as a way to build self-empathy, resilience and peer support. The group is made possible by the hospital's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit clients and families to life.

I feel joy

I feel joy when my child turns towards me, lifting her eyebrows and curling her lips upwards to show me her teeth, as if she is to cry helplessly with laughter,

I feel joy when my child is happy, smiling, accepted and not judged by the society,

I feel joy when my child sings too loudly and laughs,

I feel joy when my child is happy, successful and contented, and has achieved what she aimed for,

I feel joy when my child’s smile looks and feels like sunrise.

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