Why do so many parents feel inadequate?

By Louise Kinross

When I first saw the title of Ann Douglas's new book, Happy Parents, Happy Kids, I was a bit skeptical. I wasn't sure if it was too simple a premise to apply to the unique challenges of parenting kids with disabilities or chronic health problems.

But in Happy Parents, Happy Kids, Ann argues that many of the pressures facing parents today can't be relieved one family at a time. That's why broad changes are needed at a cultural and policy level to create the kind of wrap-around supports that enable all parents and children to thrive. We talked about why so many parents today feel so inadequate, no matter what they do.

BLOOM: In 2015 we spoke about your book Parenting Through The Storm—which focused on parents raising children with neurodevelopmental disabilities and mental health issues. What inspired you to write another book?

Ann Douglas: I thought a lot of the messages conveyed in Parenting Through The Storm needed to land with a broader audience of every parent. It’s not just parents of kids who are struggling who need to think about self-compassion, self-care and community. Every parent is at risk of feeling isolated and burnt out and self-critical. 

BLOOM: What kind of parents did you interview in your new book?

Ann Douglas: I tried to go for a diverse group of parents. I have people from every kind of income level, and different situations, family structures and challenges. The book includes insights from the parents of a child who is living with a rare disorder that makes the future a wildcard. It includes the story of a mom who is living with stage four cancer. And it features comments from a mom who is juggling five part-time jobs, and who is completely fed up with pat answers and simple solutions.

I deliberately asked the technical reviewers of the book to look at inclusiveness and equity. For example, at one point in the book I’d written about doing batch cooking on the weekend, and one of the tech reviewers pointed out “If you can barely afford the groceries for one meal, you can’t afford to do batch cooking.’ I wanted to make sure we weren’t just talking about people in traditional, predictable 9 to 5 jobs, when the new normal for many families is contract and more precarious work. 

BLOOM: I heard you speak recently, and you said many parents who were really interested in the idea for your new book then declined to be interviewed for it. Did that surprise you?

Ann Douglas: It did, because I’ve been writing about parenting for a long time, and I’d never felt that level of fear, particularly here in Canada. It seemed that all parents had a sense that they were parenting wrong. There was a lot of worry about judgment from others. They felt they might not be the best parent to be interviewed about this stuff. There’s been a lot of anxiety happening in the broader parenting culture. Parents are anxious about the world they’re raising kids in today, and what it’s going to be like when their kids are old enough to establish their own lives. They’re anxious about so many things.

Locally, in Ontario, we’ve seen parents speaking out about the changes to autism services, and the cuts to education funding. And it's not just parents of children who are directly affected who are feeling this anxiety. Parents worry that the same thing could happen to a program that affects their child, or perhaps to a more universal program that’s available to all families.

Parents feel like they’re being asked to shoulder so much responsibility, and they’re worried that the rules of the game have changed. Maybe you can’t get the job that allows you to pay the bills. Maybe you’re piecing together a whole bunch of precarious and unpredictable jobs and wages.

Parents are thinking ‘I can hardly do this now, what happens if things get worse?’ Anxiety is a perfectly logical reaction to the state of the world today, and we need to stop blaming parents for being so anxious, and give them less to be anxious about. We all need to link arms and say ‘It’s not right that anyone is losing out on what their child needs to thrive.’ 

BLOOM: What other factors make parenting feel particularly hard these days?

Ann Douglas: In order to pay the bills, in most families you need to have both parents working full-time, and a lack of work-life balance is a huge issue.

A lot of research shows it’s at the heart of what makes parents feel guilty and inadequate on a personal level. Parents think if they just try harder, they could figure out a way to have the energy to be working full time, and at the same time to be parenting to an increasingly high standard. People feel massively overloaded and guilty. A parent named Elaine in my book said it doesn’t matter where she is, or who she’s with, she feels she’s letting someone down at work or home. 

BLOOM: What in your new book will resonate with parents of children with disabilities?

Ann Douglas: I think what’s different about this book is that it’s a much more political book. Parenting Through The Storm was rooted in personal stories and what you can do at an individual family level, and the need to have peer support and community. The new book is about grabbing your community and your picket signs and demanding a better world for kids and parents. 

BLOOM: So the problems we’re facing aren’t ones we can necessarily solve alone?

Ann Douglas: No. One of the parents I interview in the new book said systemic problems require systemic solutions. Otherwise, we feel it’s an individual failing when we can’t make it all work. But how can we make it all work?

How can we solve problems like climate change or create universal child care in our spare time? Then, when a parent is dealing with something extra, like a child’s disability, you can turn up the dial by 10,000 per cent. 

BLOOM: You talk about the importance of parents remaining calm.

Ann Douglas: First, it’s important for our own parenting. Unless you can hit the pause button and consider what’s working, or not working, with your child, you can’t pivot and figure out the best way to move forward. It’s also important to provide an atmosphere where kids feel reassured that as parents we’ve got it—we’re going to take care of them, and they don’t have to worry about parenting us.

I’m someone who has to work really hard at staying calm. It’s not my natural state, and I recognize that a lot of people are wired this way. We should probably say it’s important to stay 'calmer,' not calm, even if it’s just at the start or the end of the day. We don’t need to be intensively doing meditation for hours on end! That’s never been the reality of my life, and it won’t be for most people. 

BLOOM: How can we be calm when we’re dealing with the uncertainty of a child with chronic illness or complex problems?

Ann Douglas: One thing you can do is find a safe person who can help you to carry the emotional load. There’s an awful lot of administrative work and letter writing when your child is struggling. The next time your child is suspended, maybe you can get a friend to write that letter to the school. Every letter doesn’t have to be written by the parent. Maybe another caring family member or a friend could write it. Maybe instead of feeling that you have to read all of these websites to find out what your child qualifies for, you can tap into a pool of people who’ve already done that reading, so you don’t have to start from scratch. 

BLOOM: So a group online for parents of kids with disabilities?

Ann Douglas: Yes. We’re also talking more in society now about the idea of being an ally to somebody. So who do I know in my circle who might be good at writing letters? Who is a chatterbox and would love to make a bunch of phone calls to ask questions of service providers? 

Over the weekend I received a message from a friend asking me to write a letter to encourage politicians in a nearby small town to reconsider their longstanding policy of never flying the pride flag. I was so happy he made that ask. I spent half an hour writing a letter I was proud of—a letter that talked about how important it is for every citizen of, and visitor to, that small town to feel welcome and included. Too often, we have a misguided notion that it’s wrong to ask other people for a favour, and we forget the times we’ve been able to do someone a favour, and how great it feels. 

BLOOM: One of your chapters is about guilt. I know parents of kids who are born with disabilities may feel guilty because we couldn’t prevent our child from having extra challenges.

Ann Douglas: We need to look at the difference between situations that are, or aren’t, within our control, and be clear where these things fall. In most cases, none of us would consciously choose to make life harder for our kids. With genetics and the environment it’s a bit of the spin of the roulette wheel for all of us.

We also need to think about guilt in terms of the expectations we place on ourselves. I often hear from parents of kids with special needs who feel they’re doing it wrong, because they’re exhausted, or not joyous or endlessly positive. When you’re burning out, how can you feel joyful and energized? We have to be realistic, and not add an additional layer of ‘I have to be endlessly positive’ on top of what is already a massive and unsustainable load. 

BLOOM: I’ve found the messages from Kristin Neff’s books on self-compassion helpful.

Ann Douglas: The biggest thing I’ve taken from her work is to reframe what we tell ourselves by asking ‘Would I say this to a friend?' If a friend told me ‘I’m the worst parent in the world,’ what would I say? Then try to say those kind things you would tell a friend to yourself. 

BLOOM: You argue that parents and kids need a village of support around them. Sometimes it's hard for parents of kids with disabilities to find that support, or build it.

Ann Douglas: At a lot of my presentations, parents are telling me that they feel isolated and cut off. Given that so many of us are massively overloaded with work and other commitments, it’s not surprising. But sometimes people get this idea that to have a village you have to have 40 people around you. The village could be two to three people. It doesn’t have to be huge to be strong.

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A pharmacist who burnt out has a new mission: mental health

By Louise Kinross

Amy Hu is a pharmacist at Holland Bloorview who became interested in children’s rehab after doing a student placement here. She’s been with us for seven years, was the clinical pharmacy coordinator, and is moving into a new role with our quality team. I know Amy from the weekly staff mindfulness sessions offered by social worker Anne-Marie Batelaan. Amy says it was her own experience with burnout that made her want to talk about the importance of staff mental health. ‘I’d like to make staff mental wellbeing a priority in our organization,” she says.

BLOOM: How did you get into this field?

Amy Hu: I fell into pharmacy because I wanted to do something with science that involved helping people. In second year I had a placement here and discovered this amazing place. I learned about the uniqueness of working in a rehab setting. Most people in pharmacy work in an acute-care or community setting, and pediatric rehab is such a niche. The unique part is how we get to follow clients for much longer than in acute-care. That means you really get to know not just the client but the whole family, and it’s very gratifying from that perspective.

I came here after the hospital moved into our new building. The natural light throughout the building, and the idea of bringing nature in, was so different from other older hospitals I’d been in. It's a healing environment.

The clients and families are resilient and courageous and inspire you every day, and the staff are incredible. The breadth of care we offer, and the amount of skill and passion people bring to their work, left a huge impression on my mind as a student. After my schooling and training, there was an opportunity here and I snatched it up.

BLOOM: What is a typical day like?

Amy Hu: There’s a lot of activity happening in the basement. That’s the control hub of medication management in this hospital.

The pharmacists could be rounding with the interprofessional team, reviewing medications with families, calling a community pharmacy to help transition a family back to the community, or helping to wean a client off of pain medicines.

Our technician team could be preparing medicines for our inpatients and adjusting them constantly as they change over time. We also sit on many hospital committees to ensure medication safety and do project work at a higher level. We mentor many students and end up hiring about half of them. So there’s a great variety of clinical and project and teaching work. We also support clinical trials at the hospital.

BLOOM: How many people work in pharmacy?

Amy Hu: There are 10 bodies overall and we have just under three full-time pharmacists.

BLOOM: How did you move from being a pharmacist to your coordinator role?

Amy Hu: I think it speaks to the increasing complexity and acuity we’re seeing in our population, which I feel started about five to six years ago. I realized that the clinical skills I learned in school weren’t enough to serve the clients here, whose needs were shifting. It required more collaboration and problem-solving at a higher level and more leadership skills. So I went back to school for a master’s of health administration while I was working here.

BLOOM: How did you do that?

Amy Hu: It was an incredible program at the University of Toronto that enabled me to take two days off every three weeks, and you carry close to a full-time work load and do courses back to back. It allowed me to bring real-world problems and issues into the classroom, and what I learned I could apply back here. I loved the program and use the skills I learned every day.

Now I’m about to move onto our quality team in a new role the organization has supported. The goal is to support front-line teams on projects related to quality or process improvement. It’s something I'm passionate about, and have done for the pharmacy team as a coordinator, but I haven’t had a chance to work with many other teams. This role will allow me to work with inpatient and outpatient teams across the hospital. I'm really looking forward to meeting and learning from our teams, understanding their work flow and hopefully bringing forth meaningful change.

BLOOM: What is the greatest joy of your work?

Amy Hu: Meeting the amazing people at our hospital. It takes special people to work here, to be a nurse or a social worker or a therapist or a therapeutic clown. It’s incredible to have everyone working together, and that includes the non-clinical staff from departments like information systems, teaching and learning, the research institute and our leadership team.

BLOOM: What is the greatest challenge?

Amy Hu: The greatest challenge is that there’s so much that can be done here and so many well intentioned people, that it’s easy to go overboard.

BLOOM: You mean in terms of staff?

Amy Hu: Yes. These days on the frontline I feel like it’s rare to bump into somebody who is coping really well. There can be a lot of stress and symptoms of burn out. That's concerning. It affects people’s capacity to do the work they love to do. Clinicians are put in positions where they have to say I would really like to do this, but I just physically can’t. How do I choose? That’s a tough place when you’re trained as caregivers to give.

BLOOM: What kind of emotions come with the job?

Amy Hu: All the myriad of human emotions. Like many other people, I have high expectations on myself and feel guilty when I feel like I should be doing more. There’s work stress, and then conflicts between team members can be challenging as well. A couple of years ago it really kicked in for me and I burnt out.

BLOOM: What happened?

Amy Hu: Work was really tough and I had a family crisis on the side. I remember one day sitting in front of my computer, double checking a medication order before it went to the unit, and the words were not registering. I thought to myself: ‘What am I doing here? This is not safe. I need to stop.’ With the support of our occupational health nurse, my physician and my team, I was on stress leave for almost two months.

BLOOM: What did you learn?

Amy Hu: As a clinician, you never intend to get to a point where you can’t work. I really learned my own limits. I’m human and I’m fallible and I need to take better care of myself. I needed to actually learn how to be kind to myself. While I was off, I took the mindful self-compassion course, and that was transformative for me.

BLOOM: That’s the course that our social workers Anna Marie and Dagmara offered to staff here recently.

Amy Hu: Yes. It's amazing that this program was offered here. I did it elsewhere. It helped me to get back to work stronger than I was before—to be more present, and to take time to reflect on what’s important to me, what I value, and how can I bring more of that into what I do. I acknowledged that I needed help from counsellors and mentors. It was a very humbling experience.

BLOOM: What do you do differently now?

Amy Hu: With practice, I can take micro pauses throughout the day and become more aware of my experience. I notice if I’m getting triggered, or if certain emotions are coming up, and I allow them to be there. By pausing, leaning in to the emotions, and befriending them, I find I can respond in a kinder way. 

In the past, I was relentless at pushing myself beyond my capacity. Now I say ‘Let’s take a breath.’ The self-awareness helps to regulate my emotions and I also find it helps me to be with the challenges that other people may be experiencing. Finding inner compassion helped me to be a more empathetic person and to better support the people around me.

BLOOM: I think many staff may feel burnt out, but are afraid to approach someone with what they’re going through.

Amy Hu: That’s why I want to share this story. I think there can be a lot of fear and shame and guilt around recognizing that you may need more support. And it’s not your fault.

The work is quite challenging: we go towards people’s suffering every day. There can be stigma around seeking support, and it’s so important to share the message that getting help is okay. In fact, it takes a lot of inner courage and kindness to go towards our own challenging experiences and emotions.

I had to learn that getting support didn’t take away from my ability to perform—it enhances it in so many ways. I gained so much self-knowledge from this experience and that enabled me to bring a lot more depth and care into my work.

BLOOM: So when you came back from leave, were your hours staggered?

Amy Hu: Yes, it was a very gradual approach over many weeks, and I kept the counselling support on the side. My manager and teammates were very accommodating, and I'm grateful for their support.

BLOOM: Was it hard to find a therapist?

Amy Hu: I started with our Employee Assistance Program, and then they suggested I find someone I can work with over the long term. That has been incredibly helpful. 

As I transition into my new quality role and train my team members, sometimes they ask me ‘How do you do it all?’ I remind them that I continue to seek counselling support for my own wellbeing.

For another person, maybe it’s not a counsellor that makes the difference—maybe it’s a friend or a colleague that you trust who is able to be there for you. Through that relationship and self-reflection, you come to a deeper level of understanding yourself. There are people who care and can support you. No one has to do it alone.

BLOOM: What qualities are important on the pharmacy team?

Amy Hu: The medication safety process is so intricate that you need to be detail oriented. Collaboration is also crucial because it takes the whole team to deliver the right drug to the right person at the right time. One person can’t do it. You need a lot of problem-solving skills. And more and more, we need resilience to change.

BLOOM: You said there’s been a change in the type of clients who come through our doors.

Amy Hu: They’re coming in with more medications, and more acute medications that have higher risk profiles. Our clients are also younger, so they’re more vulnerable in general to side effects of medicines. We’re also seeing a psychosocial complexity with the families we’re working with.

BLOOM: What’s an example?

Amy Hu: We may be supporting families who are involved with children’s aid, or who are trying to cope with huge financial challenges. Finding them drug coverage is becoming more challenging. Our families are pulled in so many directions. Trying to figure out equipment, where will they live, how do they feed their child, and on top of that there’s the medication. It’s a lot for them to manage, and in a short period of time. We work with our social work colleagues and our whole team to try to problem solve.

BLOOM: How do you cope when, despite best efforts of everyone on the team, an error occurs? Because we know that every person in this building has made a mistake at one point or another.

Amy Hu: When medication incidents happen they can be very challenging. We have a good system from a problem-solving perspective. We have a clear process to disclose to the family. As a team, we come together to debrief about where the system could have gone wrong, what the contributing factors were, and what we can do to reduce risk moving forward. From this process perspective we’re very experienced.

The part I find more challenging—and I know other clinicians find challenging—is the emotional impact. It’s the guilt and self-judgment of ‘How could I have done that? How could we have failed?' It’s a tough burden.

No clinician wakes up with the intention to harm somebody. When the stress isn’t so high, these incidents don’t happen. They happen when the system is being stretched, often for a long time, and relies on humans to hold it together, and something eventually falls through the cracks.

These incidents stay with you, and they affect your sense of competence. There's not too much about this in the literature yet. I know from speaking with colleagues at other hospitals that this is something they struggle with.

BLOOM: I know that in the narrative group for inpatient nurses we ran, participants came into the intervention thinking that they were the only ones who struggled with guilt or regret when an error occurs.

Amy Hu: I agree. That’s why I believe we need to place more priority on debriefing, and foster psychological safety in these conversations, so clinicians aren’t living with the guilt and fear by themselves. If you can process as a group what happened, find support in each other and feel you’re not alone, it helps everyone to cope better. I think it takes time, and every person may be at a different stage of readiness for conversations like this.

BLOOM: If you could change one thing about our workplace, what would it be?

Amy Hu: It would be to make staff mental wellbeing a priority in our organization. That could be at multiple levels. We could support teams to have open conversations about challenging experiences that make clinicians feel vulnerable. It could be supporting more mindfulness programs at the hospital, so more staff have access to these tools.

It could also be at the individual level—for each of us to reflect on what wellbeing means to us, what matters to us, and what we can each do to support ourselves and each other. It takes a whole village to run this operation and care for our children and families. We need a cohesive approach to addressing this.

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'Take care of yourself first:' A parent's recipe for mental health

By Louise Kinross

Studies show elevated rates of depression and anxiety in parents of children with disabilities. They even show our cells age faster due to high stress.

This week is Mental Health Week in Canada. The Canadian Mental Health Association is running a great campaign called '#GetLoud about what mental health really is.' It includes descriptors like 'It's about feeling good about who you are, having balance in your life, and managing life's highs and lows.'

The Centre for Mental Health and Addiction also has an excellent campaign. It's designed to remove stigma: 'My mental health is as important as my physical health.'

BLOOM is talking to parents to learn about what they do to care for their mental health.

First up is Laura Meffen. Laura’s daughter Emily Kerr, 19, has NGLY1—a neurological condition in which people lack an enzyme that helps the body remove proteins that aren’t working properly. She has complex disabilities and health needs. 

Back in 2003, when Emily was five, Laura wrote a BLOOM piece about walking into a hospital emergency, suicidal, and being admitted for a major depression. At the time, she wrote, she felt she ‘had to live up to that super-mother image…My self-worth was tied to maintaining that image of perfection and doing everything myself.’

This year Emily, almost 20, moved into a full-time residence called Participation House. Here’s what Laura says she’d tell another parent of a child with complex needs about mental health:

“You need to put your family first, as opposed to one child. A lot of anxiety comes from wanting to do everything possible for our child with disabilities. We get wrapped up in physical therapy, occupational therapy, speech therapy, and then we hear about a parent who’s doing this other therapy, and another parent who's doing something different. You want to do everything, but you can’t. It’s impossible. And it’s okay to not do everything. It isn’t healthy, as a parent, to be focused on one child 24-7.

“I’m a big advocate of respite—no matter how you get it. When Emily was younger I hired a mother’s helper. At first, she would play with Emily and care for her while I was still in the house. Then, when I got confident with her, I might leave them and run out to the grocery store. But most often, I went upstairs to have a nap.

“I put Emily in respite at Safehaven when she was 13. It was hard dropping her off, because she would cry. I had to do it in small steps and stages—baby steps. The first time we just visited. The next time we came and dropped her off at dinner time, because her favourite thing was eating. Then we came back to get her in two hours. The next time she stayed over a night. After that she would go for weekends. And then finally we were able to leave her for one week.

“Emily is a homebody and she doesn’t like to leave, so when she recognized we were going to Safehaven, she would often start to cry. But I would call after I dropped her off and the staff would hold up the phone so I could hear her interacting. And I could hear she was having fun.

“Now, Emily is in full-time residence at Participation House, and it was because of our experience with respite that when she turned 18, we found out about Participation House.

“Until she moved, I didn’t realize how stressed I was having Emily in the house. It’s hard not having her here, but it is for my mental and physical health, and for my family. I had to look at what was best for the whole family, including Emily’s brother Tyler.

“It was when the mother of another boy Emily went to school with passed away that I realized I had to take care of myself and I had to take care of the whole family.

“A long time ago, another person told me ‘You need to take care of yourself first. And then, when you’re good, that will take care of your relationship with your spouse. And if that is good, it will trickle down to your children.’ As opposed to what we usually do—which is put our children first, then our spouse, and then ourselves.

“Because we had put Emily in respite since she was 13, when we moved into the adult system, we sought out respite and she went to Participation House. On the Developmental Services Ontario form, I filled out that my vision was that Emily would live in a full-time residence. We were very lucky when a spot became available. They already knew Emily well, so they didn’t even have to go through all of the interviews.

“Respite is very important. It gives you some time with your family, so that you’re not feeling overwhelmed all the time.

“Sometimes, when Emily was younger, we would put her in respite and we’d come home and just crash. Then we could spend more time with Emily’s brother Tyler. We got used to the idea that she was comfortable there. We did our due diligence and looked into these places. It wasn’t always the best thing for Emily, but using respite was the best thing for our family.

“Often, parents like us are so stressed out that we don’t exercise, we don’t eat right, and we don’t sleep. That can make us more susceptible to some diseases.

“I reduced the amount of volunteering I was doing, even though it makes me feel good. I stopped doing things that I felt I had to, and only did things I wanted to do.

“Right now I’m able to go to yoga, and I have the energy to actually do it.”

Laura says that putting her mental health first has changed her life and made her whole family happier. What strategies do you use?

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New hub to address developmental disabilities, mental illness

By Louise Kinross

The Azrieli Foundation has given $10.4-million to the Centre for Addiction and Mental Health to create the first centre in Canada to support adults with disabilities like autism and Down syndrome who also have mental illness.

“A lot of us have anxiety and depression,” said autistic advocate Daniel Share-Strom at an announcement at CAMH today. “Why wouldn’t we?”

Daniel described his world growing up as one where the speed and volume of learning, combined with social demands, was too much to cope with for someone who had trouble reading social cues and managing sensory information. He was always being corrected, he said, which led to a “pervasive sense of being judged all the time’ and of feeling ‘broken’ and ‘not capable.’

Daniel noted there are few adult psychiatrists who are skilled in working with people with autism, and they’re almost impossible to access due to waitlists. As a result, his mother had to purchase private services for him, at an hourly rate six times her salary. “There’s no off switch to these challenges when you turn 18,” he said. “I have difficulty finding help on my own when I feel hopeless. We need strong advocates when we’re immobilized with doubt.”

According to research from CAMH and the Institute for Clinical Evaluative Sciences, 45 per cent of about 65,000 adults with neurodevelopmental disabilities in Ontario have a mental illness, and six per cent have addiction. Due to a dearth of services, a study published in the Canadian Journal of Psychiatry found that almost half of hospital admissions for Canadian adults and teens with developmental disabilities were related to mental illness.

“There are no services that provide the continuous, comprehensive care necessary for this population,” said Naomi Azrieli, CEO of the Azrieli Foundation this morning. “This is the most vulnerable population in our healthcare system.”

The new Azrieli Centre for Adult Neurodevelopmental Disabilities and Mental Health will provide better care, research and training in the field. It is being directed by Dr. Yona Lunsky, a psychologist who leads the Health Care Access Research and Developmental Disabilities Program at CAMH. Yona has a sister with a developmental disability.

Yona has led a number of studies evaluating interventions for reducing depression and stress in parents of adults with developmental disabilities. Naomi said that families are the “first level of care” for adults with disabilities, and that they are not being supported. “The normality of constant worry and anxiety becomes a backdrop to everything,” she said at the CAMH announcement. Naomi has a brother with Fragile X syndrome and said the family's personal experience played a role in the decision to fund the new centre.

All of the speakers spoke to the need to better support adults with neurodevelopmental disabilities—and their families—at a much earlier stage.

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Virtual reality may help kids with autism adapt to new situations

By Louise Kinross

Many of us have less than pleasant memories of taking the bus to school or summer camp. But for children with autism, a noisy, unpredictable bus can be particularly anxiety-producing.

That’s why researchers at Holland Bloorview are working with film company Shaftesbury to create a virtual reality experience that helps desensitize children with autism before they hop on the bus.

They’ve already rented and filmed a school bus to make their scenes as realistic as possible.

“There aren’t a lot of studies that look at the safety and efficacy of virtual reality in children with autism,” says Holland Bloorview scientist Azadeh Kushki.

Azadeh hopes to start a usability study involving 30 children with autism aged eight to 18 in February.

“We’re going to look at children's physiological responses to identify anxiety triggers and work on gradually desensitizing them to their individual triggers.” It could be engine noise, a change in route, the sound and sight of an ambulance, or other children misbehaving.

“The good thing about virtual reality is you can adjust the difficulty of the situation,” Azadeh says. “So we can change the level of noise, the number of kids, or the amount of time a child waits for other children to board the bus.”

Shaftesbury, which produces the Canadian drama series Murdoch Mysteries, approached Azadeh and her team with the idea. 

“About two years ago we started listening to clinicians and asking what advanced media products we could create for them,” says Ted Biggs, vice-president, Convergent/Technology at Shaftesbury. “We had developed an app for our TV show The Moblees that ended up increasing active play in kids up to 21 per cent. Conversations with Azadeh, her team and our clinical partners in the U.S. led us to believe that this [new virtual reality] project could really help people and families dealing with autism.”

If successful, the school bus could be the first of a number of virtual experiences created to help kids with autism adapt to unfamiliar situations.

“This is a good example of knowledge translation from the academic world to industry,” Azadeh says. “We’re giving them the tools to create, and support the feasibility of, their product.”

The project is funded by the Ontario Centres of Excellence and the Natural Sciences and Engineering Research Council of Canada.

Study results are expected at the end of the summer. 

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Share your mental health story on Bell Let's Talk day

By Louise Kinross

With Bell Let's Talk day coming up Jan. 31, I'm gathering comments from parents that BLOOM can post anonymously on social media that day.

What would you like the world to know about how raising a child with a disability in our culture affects your mental health?

More than a decade of research shows parents of children with a variety of disabilities have higher rates of depression and anxiety than other parents.

What are your mental health needs, struggles, hopes?

I'm looking for short comments that we can post anonymously on BLOOM and its social channels on January 31.

Leave a comment here or e-mail me at lkinross@hollandbloorview.ca. Thanks!

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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 Yona.Lunsky@camh.ca.

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Today we met a real, live tooth fairy

By Louise Kinross

I wanted to share a quick personal story.

My son was seen in dentistry for years at Holland Bloorview and SickKids. He has some problems with his teeth related to his syndrome and has had work done in the office and under general anesthetic. We always had good experiences. 

Then we were transitioned to an adult clinic and every visit became torture.

My son has an unusually small mouth. He can't open it wide and it's difficult to get under his lips to clean his teeth. His teeth are also highly sensitive.

My husband came back from a couple of visits to the adult clinic shell shocked. There was nothing to distract my son during a cleaning. My husband was asked to physically hold my son's arms down while the dentist cleaned his teeth. My son would comply for a few minutes, then begin resisting. My son always left these visits complaining of mouth pain, no doubt because a sharp instrument had struck his gums at some point during these tousles.

I finally attended a visit, and I left shaking. The approach seemed to be that my son's teeth would be cleaned, no matter how upset he was. The more upset my son was, the more forcefully we needed to restrain him. I asked if he could be sedated, but the dentist said he didn't believe in that. The dentist was a very kind person, but this approach didn't work for us.

Recently I reached out to the head of Holland Bloorview's dentistry to ask if he could recommend someone else. He suggested a pediatric dentist he'd trained. She sees many children with disabilities.

I called and explained how challenging it was to have my son's teeth cleaned. The receptionist told me the dentist would look at his teeth, but if he was anxious, they would gradually expose him, over multiple visits, to different steps of the cleaning.  

Today was his first visit. A dental hygienist called my son in. He got in her chair and she reclined it so he could watch a show on the TV mounted on the ceiling.

She began slowly, just looking at his teeth with her mirror. Then, for 45 minutes, she scraped, flossed, polished with one of those ticklish electric brushes, and then painted fluoride on. A couple of times my son asked if she could stop. She did. But then we'd convince him to keep going. He wasn't happy, but he could handle it. He even enjoyed wearing the sunglasses. At no time was my son restrained.

After that, my son let the dentist come in and examine his teeth. The people were so gentle, so patient, so calm. They were respectful, and had strategies that didn't involve physically holding a patient down.

I was so grateful, knowing that this would be how my son's teeth would be cared for in future. My son left the appointment happy.

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Feeling judged as a parent? Read this

By Jessica Geboers

Canadian parenting expert Ann Douglas spoke with BLOOM about her new book Parenting Through the Storm—a collection of strategies for raising children with mental health, behaviour or learning challenges, and maintaining your own health and happiness in the process. It’s Ann's most personal book to date (see above with her husband and four children). Each of Ann’s children has struggled with something, including bipolar disorder, depression, anorexia, Asperger syndrome and ADHD.

BLOOM: What made you want to write this book, particularly at this point in your career?

Ann Douglas: I remember thinking at the time, when my kids were going through such a difficult time, how it seemed like a lot of mainstream parenting books just didn’t really speak to me. I used to get infuriated by magazine articles that would say something like: ‘Better behaviour from your child in 30 days.’ That kind of article would make me crazy because it felt, to me, like the ‘Thinner in 30 days thing;’ it was unrealistic and didn’t apply to everyone. It reminded me of the kind of advice that sometimes you'd get from a well-meaning friend or relative who’d say ‘Well, tell them how to behave.’ It's like ‘Well, honestly, you think we haven't tried that? They're having a really hard time. I think you're not understanding the extent [to which] we're struggling, and the fact that we've tried everything we can think of.’

I wanted to write a book that would help parents to feel a little less alone and a lot less judged. So that was sort of my goal. In terms of why I decided to write it now: back when we were struggling, I was going through such a hard time I could hardly write a grocery list. I was not in a position to be able to look at things analytically and to be able to go into the problem-solving mode, because I was feeling stressed and overwhelmed by the situation. I think I needed to have a bit of time so that I could see that my kids could come through the other side, they could make it through the storm, and that we could thrive as a family. Only then did I feel like I could sort of start to think through what was effective, what worked for us, and then do the research to find out what worked for other families, and what strategies research was identifying as helpful.

BLOOM: One of the key themes is that in order to support your child who is struggling, parents need to take care of themselves. Is this a new idea?

Ann Douglas: No, I don't think it is. But I think that it’s a message that parents can’t hear often enough. Because you’ll say, ‘yeah, yeah, yeah, I know I really should be getting sleep or exercising or whatever, and I will once my child is doing this better, or my child gets past this milestone.’ Then you keep postponing that time of self-care and you can't do that indefinitely or you become totally depleted and burned out. I say this from personal experience. One of the reasons I'm so passionate about this stuff now is because I really did sort of hit the wall: I wasn't sleeping well. I wasn't eating well. I gained about 100 pounds and I had to really work hard to lose that weight.

BLOOM: For parents who feel overwhelmed with the demands of their child, how can they start to care for their own mental and physical health?

Ann Douglas: Sometimes it’s just little wee tiny things, like if somebody offers to help in some way letting that person help as opposed to going ‘no, no, no, we're okay. Don't worry about it.’ People want to help, so accept those offers because they can only help to make your life easier. As long as it’s not a high-maintenance person that's going to come in and start making your life miserable. We’re talking about lovely friends and family who do everything from fold laundry, run errands for you, or stay at your house with your child while you go for a walk around the block if that's all you feel you can manage at first. Because it really is very, very stressful and, I think, it's the emotional toll: the fact that your brain is still working away at solving the problems and worrying about your child 24/7. [For example], if you wake up in the middle of the night it can be hard to get back to sleep because you're feeling so worried and overwhelmed.

Looking for little ways to inject some self-nurturing or some fun into your day [is also important]. Even if it's just, when you get a momentary lull, to flip through the pages of your favourite magazine, or having a cup of your favourite tea, and connecting with people who support you. Whether it’s firing off a quick text message to your best friend saying this wonderful thing happened today, or this incredibly frustrating thing happened today. Just having an outside connection that can say, ‘you know what, you're doing a great job and you just keep doing that.’

BLOOM: Why is it so hard for parents to take care of themselves?

Ann Douglas: I think a large piece of it is that you know your child so well, and you’re into such a groove or routine with your child, that you worry: if I have a child who has autism, for example, [who] doesn't respond well to changes in routines, if I go down the street to have coffee or lunch with my friend and somebody else is here they're going to do things a different way and my child is going to find that challenging. And yes, this is true, but if you look at the cost-benefit analysis, maybe having a parent who feels refreshed and can take on the day is worth a little bit of upset. Plus you want to encourage your child, over time, to work on flexibility, so that can be one way to do it.

I think to realize that it is hard; it’s not as easy as just walking out the door. There’s so much more planning and worrying and thinking involved. But I know [that] so many parents, once they take that step, they say, ‘Why didn't I do this years ago?’ Because they really feel that it has made that much of a difference in their ability to cope and not to feel flattened and depleted all the time.

BLOOM: What do you think happens if parents don't make themselves or self-care a priority?

Ann Douglas: They get really burnt out and really depleted and their physical health can suffer. Their mental health can suffer. They can't be the kind of strong advocate for their child that they want to be. They could be really grumpy and unable to focus on big-picture parenting goals, but get caught up in the emotion of the moment because they [don’t] have any self-control resources left.

BLOOM: In the writing of this book you interviewed other parents and experts at length. How did you decide what to include?

Ann Douglas: Well first of all, whenever I write a book I tend to get a lot of input from parents. So I put out a call through all my usual channels asking if people would be willing to be interviewed over a period of months about their family's experiences. I had about 50 families step forward. I interviewed them via a series of eight questionnaires that were sent out over about two to three months. It was probably about eight hours’ worth of work per family answering my questionnaires. I'm hugely grateful for the time and effort they put into that because what I walked them through [was] all the different stages: What was it like for you when you didn't know what your child was dealing with? What was it like going through diagnosis and treatment? What are your hopes and dreams for your child? What is your child's life like now? So that I could write a book that would cover those different chapters in the family's journey.

In terms of the researchers and the experts, I did a huge amount of research. I read about a thousand different journal articles, about 40 books, and an awful lot of online research to find top Canadian researchers who would have something helpful to say to families. Luckily, almost everyone I asked for an interview managed to fit it in, including very, very busy people who were flying across the country to speak at conferences. I'd get them booked eight weeks in advance for 15 minutes on a Friday morning. But I managed to get a lot of really good information and to get them to sort of boil down in practical ways what this could mean to make life better for parents who have a child who’s struggling.

BLOOM: Were you surprised about how many families were willing to share their stories?

Ann Douglas: I was surprised at the depth and how much they trusted me. They told me very intimate and personal and painful times in their lives and they trusted me to portray their stories in a way that honoured themselves and their children and their struggles as opposed to judged. They made themselves vulnerable and that takes a lot of courage.

BLOOM: What do you hope parents take away from the book?

Ann Douglas: I hope that parents emerge with the feeling that they’re not alone and that they're doing the best they can in a really difficult situation. I think it's so important to remind parents to treat themselves with the same kindness they would extend to a friend who’s struggling. So in other words, we're talking about self-compassion. Because self-compassion is life changing and if I can just spark that idea in people's minds, of being a little kinder to themselves, they'll find it so much easier to deal with the day-to-day challenges of what they're facing in their families.

BLOOM: And professionals, what do you hope that they take away?

Ann Douglas: I hope professionals who read the book get a sense of how hard it is for parents and the fact that parents really are doing the best that they can. That way, professionals may be less inclined to judge or assume they know better and recognize that the parent is the true expert when it comes to their child and their family situation. If parents and professionals can work collaboratively, sharing the same goal of helping the child, amazing change can happen.

BLOOM: There are many families mentioned in the book, including your own, who have several children with mental health, behavioural and neurodevelopmental challenges. Is this common?

Ann Douglas: It is. Often a lot of things have some kind of genetic basis and we know that there’s usually a mix between genetics and the environment. So it’s not exclusively genetic, but you know there’s going to be a whole bunch of genes popping up in different family members, so it’s not unusual at all for there to be people that share the same diagnosis or have related diagnoses. Maybe one person has problems with anxiety, and somebody else with depression, and somebody else with ADHD, and so on.

BLOOM: Which can make it even more challenging?

Ann Douglas: It can, especially if the parents also share the diagnosis. Maybe [you] have ADHD and are trying to parent kids with ADHD and at first it can feel like ‘oh wow, this isn't going to work very well’ but then realize that you've gained a lot of wisdom and insight living your life and figuring out how to manage your particular challenge so you can share some of those insights with your child. You can also be more understanding because you know that these challenges are for real, they're not something made up and it’s not just a child trying to be difficult or act up for the sake of acting up. There’s a reason for the behaviour.

BLOOM: Was there anything that you learned while working on the book that was particularly new, interesting or surprising given your experience?

Ann Douglas: The information about self-regulation was something I hadn't done a lot of reading about until I started doing the research for the book. The idea that we can both boost our positive emotion and reduce our negative emotion just by making choices in our daily life; that was mind blowing for me. Just learning how taking a couple of walks a day can help me to manage my anxiety. Also, the piece about self-compassion: that it’s so important to change from the self-critical channel in your head where you hear mean things being said to yourself about yourself, to a much more self-compassionate kind of stance where you remind yourself that you're doing the best you can in a difficult situation. Then trying to think what you can do to make life better.

BLOOM: How did you decide what language to use to describe conditions?

Ann Douglas: I want to be as inclusive as possible so that everybody can sort of see himself or herself in the book. I also believe when we say someone has a mental health disorder it sounds, to me, so negative and so judgmental. I picked up on the language about calling things ‘a challenge’ from attending a mental health conference last year that was hosted by the Institute of Families for Child and Youth Mental Health. They asked the young people themselves ‘What language do you prefer when people are talking about your mental health problems/difficulties/challenge?’ And they said they would very much prefer the idea of using the word ‘challenge’ because that left the door open to possibility and hope, because if it's a challenge you can just keep working at it. Whereas if it’s a disorder, it sounds a lot more definitive and that there's not quite as much room to grow.

BLOOM: You repeat full names and diagnosis quite often. Is the book meant to be read from start to finish? Or can you kind of skip around?

Ann Douglas: You can dive in to whatever you need most today. If your child is having a hard time at school you might dive into the advocacy section and if you’re preparing for that first meeting to get a diagnosis, you might start there in the book. If you just want to know what it’s like for other families, you might read the stuff on how it is for other people and their families. That’s why it has a really good table of contents and comprehensive index—so that whatever your issue is today when you kind of feel like you're hitting the wall, then flip open the book and look for the appropriate section. You might be inspired to read other sections around it, but at least if you have a burning question or issue today, then you know where to go.

BLOOM: What kind of feedback have you had? What are you hearing from parents and professional groups?

Ann Douglas: They’re really grateful that there is a book like this now so that they don't feel quite so alone. They are just in awe of the braveness of the families who decided to share their stories in an effort to try and help other parents. I share that feeling of appreciation because if other families hadn’t been willing to share their stories there wouldn’t have been a book.

BLOOM: Was it challenging to write candidly about your own experiences?

Ann Douglas: I had to think hard about what I was prepared to share and what I wasn’t prepared to share, and I also needed to check things out with the kids because it’s not just my life, it’s their life too. So I made a lot of really conscious and deliberate choices about what I was going to write about. A couple of years ago, I sent out a tweet on Bell Let's Talk day saying that I lived with bipolar disorder and I thought it’s really important for people to know people out there who are dealing with a particular challenge or disability or whatever. Because if we don't have some sort of role models out there then nobody will ever understand that it’s possible to have a diagnosis and an amazing life. I think that I feel a real responsibility as somebody who, yes has bipolar disorder, but also, yes, has a pretty great life; that I should say I’m not going to be afraid to tell people I live with this.

BLOOM: Was it difficult to choose what you were going to include?

Ann Douglas: I think I just wanted to be as honest as I could and talk about different experiences that my kids had had and that we’d had because, again, not wanting other parents to feel like they were doing it wrong if their child was having a hard time at school or if they were having a hard time navigating the children’s services or mental health care systems. The systems are complicated and schools don’t always have the resources they need to be able to respond to the needs of children. I think that if we all talk about these challenges then that’s the first step to getting these various systems funded enough that every child gets their needs met sooner rather than later.

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How many red flags on mental health do we need?

By Louise Kinross

Very high stress levels in 17 per cent of Canadians who care for a child or adult with a health condition or disability was flagged as a significant concern in a report on mental health indicators by the Mental Health Commission of Canada (see page 8) yesterday.

There isn't anything new or surprising about this. In fact, I'm surprised that the number is so low.

There's more than a decade of research showing parents of kids with disabilities have higher rates of stress and depression than parents raising typical kids, as well as poorer physical health (See the bottom of page 4 of this 2013 Australian report for a review on the mental health studies). One study found the level of chronic stress experienced by mothers of youth and adults with autism mirrors that seen in combat soldiers.

The worry is felt by siblings, too. A 2014 study in Pediatrics found that siblings of children with disabilities were almost three times more likely to have parent-reported emotional and behavioural problems. "Growing up with a child with a disability is a risk factor for mental-health issues," lead investigator Dr. Anthony Goudie told BLOOM.

When a group of Australian researchers were trying to come up with a practical resource to support mental wellbeing in parents of kids with disabilities, they could only find one document online targeted to this population. 

They've since released Wellbeing for Parents and Carers, a resource for parents caring for children and adults with disabilities. It was put together based on interviews with parents.

They identify these ways to help promote mental wellbeing: 

Practise self-care.
Ask yourself 'How am I doing?'
Ask for help.
Try not to be too hard on yourself.
Recognize your achievements.
Plan time for yourself.
Take a break from caring.
Build supportive relationships.
Talk about how you feel.

I know some of these strategies will sound impossible to our readers, especially "practise self-care, plan time for yourself and take a break from caring."

"Ask for help" is also a really tough one, because as parents of kids with disabilities we don't want to create the perception that what we do is hard (lest people interpret that to mean we love our kids any less, or that our kids somehow "are less").

I'm tired of reading study after study, year after year, about how parents like us are at risk. We have ENOUGH evidence. In addition to the scientific studies, there are regular news stories about parents who reach breaking point.

The report on Canadian mental-health indicators notes that "caregivers are an invaluable asset to formal health care and social service systems in supporting individuals with physical and/or mental health conditions."

They got that right.

So why isn't there more action on giving parents the respite and supports they need to better take care of themselves? So that they don't become mentally or physically ill?

I know a number of families whose children require the level of care received in an ICU at home. Yet they receive a weekly allotment of nursing care that gives them about six hours a night. Do most of us cope well on six hours of sleep a night? 

When I saw the news story about high stress in Canadian caregivers being flagged as a mental-health concern I felt a rush of excitement. But then I looked back over the years and years of studies related to parenting kids with disabilities. I remember reporting on one of them by our then chief of medical staff back in 2005. And I don't expect any change.

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A brother's story fuels autism researcher

By Louise Kinross

“I sit here and think ‘How did I get so lucky?’” says Susan Day Fragiadakis, a research assistant in Holland Bloorview’s Autism Research Centre.

Susan recruits and assesses children and youth and their families for a study that aims to link genetic changes with specific types of autism and other neurodevelopmental disorders like Down syndrome.

Susan is part of a Province of Ontario Neurodevelopmental Disorders (POND) Network study that follows over 300 children and young adults.

“The goal is to understand how genes and biology affect the brain and behaviour in autism and other neurodevevelopmental disorders,” Susan says. That includes attention deficit hyperactivity disorder, obsessive compulsive disorder and intellectual disability. Participants give a blood sample for genetic analysis; have a brain scan; do interviews and questionnaires; and choose whether they wish to participate in a medication trial.

Susan’s role includes conducting detailed parent interviews that track “everything you could imagine about a child’s history back to birth: sensory issues, anxiety, sleep, eating, medical history.”

Her passion for understanding autism stems from her own family’s experience with incorrect information when her brother Rick was diagnosed in the early 1960s (see Susan top right in photo, with her siblings). 

“My mother was told that Rick’s autism was the result of poor parenting,” Susan says. “The implication was that somehow she had damaged my brother and the only treatment offered was psychotherapy for her. When she pointed out that she had two typically developing kids in the waiting room, the response was ‘but they’re girls.’ The way my mother and father dealt with it was to be an open book—to share our story to move understanding along. My mother wanted to educate people to help the next generation of families.”

Susan’s work on the POND study feels like coming full circle from her family’s experience of being blamed for her brother's autism, she says. “I used to worry about the lack of quality research into autism and now I get to work in a lab led by a child neurologist, a psychologist and an engineer that’s doing quality research that’s going to advance our knowledge and potential interventions.”

Susan has fond memories of her childhood. “When we lived in a small town my sister and I would take Rick on adventures that we didn’t fully explain to my parents. My older sister was the boss and I was the little sister. Rick would go cliff-climbing with us or ride his bike with us out into the country or go to the race track with us.”

Rick never attended school. “In some towns we lived in he went to programs run in church basements by 'the Association for the Mentally Retarded.' But the rest of the time he was with my mother and he liked to help her with cooking and cleaning and doing the laundry.”

In his early teens Rick went to live in an institution. “I feel very guilty about it,” Susan says. “I’ve never talked to my sister about it but I’ve always felt that some of it was that my parents thought it would be the best thing for my sister and me. That’s what they were told. Rick got very sick when he first went. There was a long period of time where we were told that to help him adjust we weren’t allowed to see him. That was hard. I think I blocked out a lot of things I didn’t want to remember.”

As a teenager, Susan worked with other children with disabilities. “My mother volunteered me to babysit for free for a family that had a child with autism. I think I knew I had skills working with individuals with disabilities and their families.”

That led her to study psychology at university. Ironically, Susan did an eight-month clinical master’s placement at the same institution her brother had once lived in. “It was eye-opening,” Susan says. “There’s a reason they were closed. They’re not the ideal setting for most people.”

Rick was one of the first people transitioned back to the community. He now lives in a group home and visits Susan and other family members every two to three weeks. At 60, he loves horse-back riding, sawing wood and fancy restaurants.

After graduating Susan spent decades educating people about autism, most recently at the Geneva Centre for Autism. “What people remember most from my talks is the examples I’ve given of my brother. As a family, we always talk about how Rick has educated two generations of workers. When I did public speaking there was always someone in the audience who knew Rick. One time I was talking about strengths and how just because you can’t talk and didn’t go to school doesn’t mean you don’t have strengths, and a woman in the audience started crying. It turned out she’d done her master’s research on my brother and had interviewed my parents. Rick’s had a huge impact on a whole lot of people’s lives.”

In recruiting families into the POND study, Susan feels she’s enabling youth and families to continue educating professionals. “I was consenting a kid into our study and one of the questions is ‘Why do you want to be in this study?’ This boy said ‘I want to be in the study because I can talk and I can tell you things that those other kids at my school who can’t talk aren’t able to. I’m speaking for them.’”

Growing up, Susan’s family participated in lots of research studies but didn’t typically hear back on the outcome. “I’m proud of the fact that we have annual science days for our POND families and the principal investigators come and explain how they’re using the data. The families are giving us their time, their information, and opening up a lot of stuff for us. We have a responsibility to respect them.”’

Susan believes her experience as a sibling to a brother with autism and as a parent to her own children helps her draw out the information she needs from parents.

She’s excited that the study is leading to practical interventions. For example, scientist Azadeh Kushki is developing an anxiety meter “that gives youth a visual prompt to changes in their heart rate that signal they need to do a calming strategy. This helps because kids with autism have difficulty identifying their symptoms of anxiety. It’s truly a collaborative effort.”

Most kids enjoy participating in the POND study, Susan says. “They’re with people who appreciate them and see their uniqueness as an interesting thing, as opposed to something to be fixed. We meet some of the most amazing kids who daily teach me something new.”

The study is funded through the Ontario Brain Institute until 2018. “It’s such a robust, rich source of information,” Susan says. “I hope we’ll be able to follow some of these kids and their families longitudinally.”

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Peer-led groups treat distress in moms of kids with autism

By Louise Kinross


Parent-led groups in mindfulness meditation and positive psychology significantly reduce stress, depression and anxiety in mothers of kids with developmental disabilities like autism, according to a July 21 study in Pediatrics.

Two-hundred and forty-three mothers—65 per cent with children with autism and the rest with other developmental disabilities—were randomized into either a Mindfulness-Based Stress Reduction group using breathing exercises or a positive psychology group that focuses on cognitive exercises like curbing negative thoughts and practising gratitude.

Six weekly, 90-minute sessions were run by mothers of children with disabilities. They received four months of training and were supervised.

At baseline, 85 per cent of participants had significantly high stress, almost half were clinically depressed and 41 per cent had anxiety disorders.

Both treatments led to significant reductions in stress, depression and anxiety and improved sleep and life satisfaction. The drops in depression and anxiety were large. Mothers in the mindfulness group had greater improvements than those in the positive psychology group. Only one treatment difference was seen in the disability groups: Mothers of children with autism improved less in anxiety. Mothers continued to improve or maintain gains during a six-month follow-up.

Researchers suggest that further research should look at groups that incorporate aspects of both mindfulness and positive psychology.

“Our research and findings from others labs indicate that many mothers of children with disabilities have a blunted cortisol response, indicative of chronic stress,” says lead investigator Elizabeth Dykens, director of the Vanderbilt Kennedy Center for Research on Human Development and professor of psychology. They also have reduced immune function and shorter telomeres—the protective cap on the ends of strands of DNA—which indicates speeded up cellular aging.

“Compared with mothers of typically developing children, mothers of children with neurodevelopmental disabilities experience more stress, psychiatric problems and poorer health,” the researchers say. Although the “cumulative stress and disease burden of these mothers is exceptionally high…policies and practices primarily serve the identified child with disabilities.”

The researchers call for more research on how trained peer mentors can work with professionals to address unmet mental health needs of mothers of children with developmental disabilities.

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