Thursday, December 7, 2017

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 

Monday, December 4, 2017

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

Friday, December 1, 2017

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.

Tuesday, November 28, 2017

This parent's essay didn't sit right with me

Photo by Elinor Carucci in The Cut

By Louise Kinross

On Sunday, I clicked on this piece in New York Magazine: Every Parent Wants to Protect Their Child. I Never Got the Chance.

There’s this adorable
 image of a toddler who appears healthy, but who, we learn, has cystic fibrosis (CF). CF is a progressive genetic disease that causes damage to the lungs and digestive system. It shortens life, although some people with the condition are living into their '40s and '50s.

His mother, Jen Gann, says she chose to have prenatal genetic testing while pregnant because “if something were wrong,” she would abort.

Due to human error, Gann never received the results, which showed she was a carrier for the CF genetic mutation. That meant her husband wasn’t advised to get tested. He also is a carrier. They found out their son Dudley has cystic fibrosis when he was a few weeks’ old.

The rest of the piece is about the intense guilt Gann experiences and her decision to sue her health providers in a case of wrongful birth.

I feel empathy for Gann. Every mother hopes she will be lucky enough to give her newborn child a clean slate at life.

Perhaps where we differ is that I don't view my child's health as an entitlement guaranteed through science. I have a son with a rare genetic condition. After he was born, I stopped counting the number of doctors who said: 
But he had a normal amnio!

Gann's piece is problematic for me in a couple of ways.

At one point she envisions telling her older 
son: “I’m sorry I didn’t save you, from your own life.”

Oddly, we don’t hear from any adults with cystic fibrosis in Gann’s piece, people who could speak firsthand to the complexities of their lives. Will Dudley grow to wish he were not alive? Does his opinion, when he’s able to render it, matter?

Instead, we read about a conversation Gann had with Dortha Jacobs.
 Jacobs established the legal concept of wrongful birth in 1975, when she sued her doctor for not diagnosing her rubella when she was pregnant with her daughter Lesli. As a result, Lesli was born with severe disabilities. 

This is where I felt an editor should have applied the brakes.

Lesli isn’t offered any agency in the piece. Gann says Lesli lives in supported housing, can’t see, hear, talk or walk, has intellectual disabilities and has had over 20 surgeries. “It’s a life sentence,” is how her mother Jacobs describes her parenting experience.

I empathize with the challenges experienced by Jacobs and her daughter,
 and the struggles Gann anticipates with her son. But nothing about disability, or illness in the case of CF, is ever black or white.

We aren't told about how Lesli communicates. Why do we not hear from this marginalized person, or from other people with disabilities?

Gann says if she’d gotten her test results, she could have chosen to get pregnant using IVF to ensure a healthy embryo. She then asks: “Would I still have made Dudley, this exact son, only without his disease?”

Well, uh, no. Her son Dudley was the son that she would have terminated, prior to trying again with IVF. Another child would have been another child.

And that’s the sticking point, isn’t it? When a child is born with a disability or chronic health condition, it’s part of their identity. It doesn’t sit, like an inert blob, separate from the human being. It’s a part of all of their experiences, good and bad, part of the way they see the world and interact with it.

 says she’d like to replace the term “wrongful birth” with something like “parental choice.”

What about choice in how we live our lives with our children, in the here and now?

Today I listened to Keith McArthur's podcast with Fabiana Bacchini, author of From Surviving to Thriving. McArthur, who writes The Instruction Manual, is dad to a son with a rare genetic condition. Bacchini struggled with infertility, then got pregnant with twins. One child died in utero, and the other was born severely premature, with many complications, and later diagnosed with cerebral palsy. 

This line from Bacchini stuck out: You have to be making a choice everyday, a conscious choice, that this is a good journey, despite the hardness and sadness and the unknown.

That's the one choice we all have.

Friday, November 24, 2017

Young carers and other pieces of disability news

Photo by CBC News

By Louise Kinross

Youth who help care for a disabled or ill brother or sister were in the spotlight this week at the Young Carers Forum in Toronto, organized by The Change Foundation, an Ontario health think tank.

Alyssa Van Wynen, 21, centre above, spoke to CBC about her experience supporting her older sister Tiffany, left, who suffered a traumatic brain injury in a car accident. “With my sister, she lost out on a lot of stuff, so there’s that huge guilt factor, too,” she says in this eye-opening interview. “Because I am younger than her, I’m getting all these opportunities and stuff that she didn’t have the chance to experience.”

The Change Foundation says as many as one-third of people between the ages of 15 to 24 in Ontario act as caregivers to a family member. You can watch some of their stories here.

Two Toronto programs for siblings of children with disabilities are the Young Carers Program through Toronto Hospice, and a Sibling Support Program at Extend-A-Family.

In other news, check out this interview with Microsoft’s Chief Accessibility Officer Jenny Lay-Flurrie, who is deaf, on AXSChat, where Twitter users discuss accessibility in business.

Microsoft has its own profile on Jenny.

The London, U.K. travel company Accomable, for people who need accessibility, has been bought by Air BnB. That should mean more and better accessibility features in Air BnB listings.

Two new books caught my eye today. The first is Academic Ableism: Disability and Higher Education. That’s it, I thought! Academic ableism. That’s the concept I’ve been trying to articulate. How the culture of academia excludes people with disabilities, especially intellectual disabilities.

Here’s a short passage: “Disability has always been construed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of 'lower education' to justify its work and to ground its exceptionalism, and the physical gates and steps that we find on campuses trace a long history of exclusion.”

The book looks at how universities have helped define, study and devalue disability, but never recognized disability as a source of knowledge.

University of Michigan Press describes it thus: “The ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual, mental, or physical weakness, even as we gesture toward the value of diversity and innovation.” Author Jay Dolmage is associate professor of English at the University of Waterloo.

The book come out Dec. 27.

The other book that intrigued me is A Feminist Ethnography of Secure Wards for Women with Learning Disabilities: Locked Away.

Author Rebecca Fish writes: “This book is an ethnography of locked wards for women with learning disabilities. It represents just a small part of my life the year of my fieldwork...These women had been removed, sometimes a great distance, from their families and friends, and compelled to lead a restricted life under surveillance and control.” Rebecca is a researcher with the Centre for Disability Research at the University of Lancaster in the U.K.

Finally, CanChild is looking for feedback on a new knowledge hub based on its F-words in childhood disability. Check it out and click on the top right to do an evaluation.

Thursday, November 23, 2017

'We're the custom tailor for people who use wheelchairs'

Koolway co-founders Jennifer Gallienne and John Cook with head cutter, sewer and pattern designer Vienna Liu.

By Louise Kinross

Jennifer Gallienne is co-founder of Koolway Sports, a premium Canadian line of coats, capes, boots and mitts designed for children and adults who use wheelchairs.

“Our outerwear is for people in wheelchairs who want to go out and enjoy life and be warm, comfortable and dry,” Jennifer says. “The reason people come to us is they can't find anything off the rack that has zippers in the sleeves—to make it easy to put on and take off—a half back for comfort, shoulder openings for chair straps, and little g-tube openings. 

“We work with every body shape. We work with children who use traches, and can't have fleece in the top of their coat. In one of our focus groups, a woman said that while she was running, the blanket she had on her child in the stroller kept falling off. I sat on the floor with her and drew a picture of a blanket with a zipper, like a bunting bag, and said 'Is this what you want?' That's how our product is developed—through parents, or the person in the chair, telling us what they need and want.”

Jennifer runs Koolway out of a home studio in Whitby, where she works with a team of professional industrial sewers who make the coats. “We're paying top wages and buying top-of-the line fabrics and notions from Toronto, Montreal, Calgary and Colorado. We make quality coats that last 10 years.”

Koolways sells its products worldwide, with about 75 per cent of orders coming through its website, says co-founder John Cook, who is also president. Before taking an order, Koolway asks customers to watch a video on how to take six key measurements, then confirms sizing on Skype or Facetime, so that they can see the customer’s wheelchair and make recommendations. They also do in-home fittings or group fittings at schools, Holland Bloorview, Variety Village and Whitby Ability Centre.

The adaptations in the coat are designed to reduce dressing time from 20 minutes to two minutes, John says. “For parents and school caregivers, that frees up a lot of time.” The company's most popular product is its winter coat with a detachable front and back blanket. It costs $510 to $760, based on features.

“Our main challenge is the lack of government grants for families who can't afford them,” says John. “If a family doesn't have the resources, we'll try to work with them. We'll contact third parties. Variety International recently authorized our product in some regions as eligible for funding. Sometimes we may have a family within our circle whose child has outgrown their coat, and they may ‘angel gift’ it to another family. We've reached out to Easter Seals, but they raise funds for other items.”

Koolway is partnering with parent-run foundations Three To Be and Peaceful Hearts Georgina, as well as Ability Online, to “matchmake” families who can benefit from a gently-used coat, Jennifer says. “If only people realized that a coat is a necessity.”

Jennifer began Koolway after losing her job as a graphic designer at age 40.

Like the “connector” personality described in Malcolm Gladwell's book The Tipping Point, Jennifer had a knack for knowing people, and using these connections to develop her business idea.

Jennifer's cousin was a seamstress. A parent had asked her to custom-make a coat for her son who used a wheelchair. “I knew dressing was a struggle for people with disabilities, and I said let's go into business,” Jennifer recalls.

As a graphic artist in Toronto, Jennifer had worked in the Fashion District in Toronto. “I used to sit on the street car with Agnus, who was a pattern maker for a high-end designer in my building. I picked up the phone and called Agnus to see if she would design some patterns for us. Do you remember those bug shirts that are made for people who go into the woods at their cottages? I called up the bug shirt man and picked his brain about where he manufactured his products in Toronto. I had to learn everything by trial and error and I did that, picking up the phone and asking people.”

One of the people Jennifer called was John, a neighbour who’d volunteered with Special Olympics when he worked in insurance in Calgary. “It was a Wednesday night and I was watching Dragon’s Den and I got a phone call from Jennifer saying ‘I’ve got a business, would you like to see what we’re doing?” John says. “They needed a friendly dragon and that was me.”

Recently, Koolway reached an agreement with George Brown College’s Fashion Exchange Program to have students help them plot, grade and digitize a cape, so that it eliminates cardboard patterns. “I had no idea this Fashion Exchange existed,” Jennifer says, “then I heard Matt Galloway on CBC’s Metro Morning interview the director.” The program trains students to be industrial power sewers, and includes refugees who were skilled sewers from other countries and need to learn Canadian standards. Koolway has placed an order for over 100 capes.

Jennifer describes the business as a labour of love. “We’re the custom tailor for people who use wheelchairs around the world,” John says.

Wednesday, November 15, 2017

Self-compassion may fuel parent resiliency

By Louise Kinross

Greater self-compassion was related to less stress and depression in parents of adults with developmental disabilities, according to a study in the Journal of Applied Research in Intellectual Disabilities.

The findings are based on self-report measures of 56 Toronto parents who attended one of two six-week groups as their children waited for services after leaving high 
school. One was a mindfulness group where they were taught to pay attention to their feelings and thoughts in an accepting, non-judgmental way. The other was a group providing information and support on getting services, many of which are wait-listed. One-quarter of the adult children didn't have anything to do weekdays.

The paper defines self-compassion as “being touched by and open to one’s own suffering, not avoiding or disconnecting from it,” and “generating the desire to alleviate one’s suffering and to heal oneself with kindness.”

The two parent groups didn’t focus specifically on self-compassion, but the mindfulness group included learning how to do a loving kindness meditation that begins with a focus on the self.

The current study found self-compassion was negatively correlated with depression and stress—even after controlling for parents’ perceived caregiving burden; for parents of children with autism, who sometimes have more stress and depression than parents of children with other developmental disabilities; and for neighbourhood income.

“Self-compassion is something that matters and that we need to pay more attention to,” says investigator Dr. Yona Lunsky, a senior scientist at CAMH who partnered with Developmental Services Ontario and Community Living Toronto to run the groups. “Parents are very compassionate when it comes to their own kids, but do they have that same compassion for themselves?

“Often, these parents feel inadequate. Why do they feel inadequate? Because of all of the things they’re supposed to be doing to make sure their child is okay. Sometimes those things work, and sometimes they don’t, and sometimes that’s hard on parents. They may experience inner psychic pain, or the pain of the child or spouse or other siblings.”

Parents’ first reaction may be to dismiss that discomfort. “We don’t have time and we’re scared to look at what’s going on in ourselves—that we are suffering. We think ‘If I’m going to be strong, I won’t pay attention to that, and I’ll keep going.’ But if we’re disconnecting and pretending it’s not there, we’ll never relieve that suffering, and our approach will eventually be harmful.”

Yona likens it to an athlete who continues running on an injured knee. “You have to notice what’s going on when you’re in pain, so you can treat it with gentleness and love and care.”

Parents often feel an automatic sense of compassion for their child, but don’t extend the same kindness to themselves. “Maybe instead of berating yourself because you did something wrong, you can forgive yourself, or notice how you’re experiencing it, or just be gentle. It’s about gentleness.”

Yona notes that there’s a body of literature on self-compassion in the general population, but work looking at its role in parenting children with disabilities is early and emerging.

“We had a sense of self-compassion's importance for parents from past research, but this is the first study to demonstrate its association with mental health for parents of adults with developmental disabilities," says Suzanne Robinson, a graduate student at York University who was lead author and analyzed the data for the study. Suzanne is doing her PhD in clinical developmental psychology and worked as a summer research student at Holland Bloorview in 2010.

Yona says future research could look at understanding why some parents of children with disabilities are more self-compassionate than others, and how to foster self-compassion in this population.

You can contact Yona at