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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Raising a disabled child in an abled world takes a toll

By Louise Kinross

Today is Bell Let’s Talk day and we want to join the dialogue by talking about mental health and parenting children with disabilities.

Over the last decade, studies show that parents of children with a range of disabilities like cerebral palsy, autism and Down syndrome have higher rates of depression and stress than other parents.

This 2013 Australian report provides a good overview of our unique mental health challenges: Enhancing support for the mental health of parents and carers of children with disability.

Consider some of these contributing factors. 

Parenting a child who is devalued and marginalized in our culture can be heartbreaking.

Parents of children with disabilities often have to fight to have their children included in everyday activities and regular school programs. Advocacy is time-consuming and emotionally exhausting. It's sad when your child struggles to make friends.

Parents may not be able to get the therapies their child needs covered publicly. Raising a child with a disability costs more. Often times, one parent needs to be at home.

Some parents have experienced many traumatic, life-and-death situations with their child. Others have been with their child through dozens of painful surgeries and gruelling months of rehabilitation.

Lack of home-care nursing and the need to care for a child around the clock can be physically exhausting. See Parents of ventilated kids risk own health due to sleep loss.

It’s sad when many people don’t delight in your child the way you do, and see their beauty, value and wholeness.

Recently, we’ve seen some exciting studies about interventions that can reduce stress and depression in parents like us. For example, in the last year we’ve written about three CAMH studies showing the benefits of mindfulness, self-compassion and acceptance and commitment therapy. The most recent: Accepting emotions reduces depression and stress in parents and Self-compassion may fuel parent resiliency. In 2014 there was this Pediatrics study: Peer-led groups treat distress in parents of kids with autism.

Holland Bloorview's Dear Everybody campaign aims to help the public understand the experiences of disabled children and their families, and to reduce stigma.

In light of Bell Let's Talk, I asked parents on our BLOOM Facebook page this question: “What would you like the world to know about mental illness and parenting children with disabilities?”

Here are some of the responses (edited for space).

Post-traumatic stress disorder is now recognized in first responders. Living through repeated life-and-death situations with your own child takes a toll.

The world should know that we worry constantly and that it can be exhausting. I love our daughter to death and she brings us so much joy, but the stress and worry about her future can be debilitating. Except—it actually can’t be, because you just carry on. You have no choice. I worry that this reality takes a toll.

Hopes, dreams and fulfillment for our children are waylaid for doctor appointments, constant phone calls about denied necessities, hospitalizations, Emergency visits, sleepless nights, loneliness, lack of freedom, but most of all guilt. Did we do enough? What did we forget? Are we paying enough attention? The list is endless, but at the top of that list should be FEAR. Who will be there to carry on for our child when we can’t?

I have never gotten over the trauma of our daughter’s early birth and the subsequent turn she took after birth that led to her disability.

We may always look like we have it together, but placating us with ‘You seem to be very strong’ pushes us further into the dark and away from help. We need proper assessment.

Don’t leave it till we fall off the rails. Studies show that parents like us have higher rates of depression and anxiety than other parents.

I took a physical for insurance and was asked ‘Why are you on an anti-depressant?’ I simply stated: ‘I’m a special-needs parent and I’m always advocating, praying, teaching, learning, and I must cope somehow.’

There is the everyday worry I have for her health and wellbeing, both physical and mental. I constantly worry about what happens to her in the future. Will I be well enough to take care of her, or will she be able to live a somewhat independent life? Oh, and let’s not forget the worries of possible abuse of my girl—physical, mental and sexual. Our lives are mentally exhausting!

Please leave a comment about your experiences with depression and anxiety and strategies you use to help yourself stay healthy.

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Accepting emotions reduces depression, stress in parents

By Louise Kinross

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

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

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

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

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

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

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

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

BLOOM: What is ACT?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

BLOOM: Another part of ACT is called cognitive defusion.

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

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

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

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

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

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

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

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

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

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

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

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

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

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Could special-needs parenting 'stress' be good?

By Louise Kinross

There’s been so much research recently about how chronic stress puts parents of kids with disabilities at greater risk of physical and mental health problems, including the suggestion that it can cause us to age faster.

That’s always made me feel pessimistic and kind of doomed.

So when I was sitting on a rotary bike at the club yesterday and saw an interview with the author of The Upside of Stress: Why Stress Is Good For You And How to Get Good At It I perked up.

I figured it was some kind of fluffy book, but when I later pulled it up on Kobo, I realized it was written by Stanford University psychologist Kelly McGonigal and has a lot of research behind it.

Her premise is that most people view stress as toxic and harmful to our health and that this belief creates physiological responses that lead to a self-fulfilling prophecy.

On the other hand, there are people who view stress as enhancing: they see it as improving work performance, improving their health and vitality, and something that can be harnessed to promote growth.

I haven’t gotten far into the book, but McGonigal summons research that suggests that how you expect stress to impact you—either positive or negative—plays a role in how your body responds to it.

She references research that shows “that people who believe stress is enhancing are less depressed and more satisfied with their lives than those who believe stress is harmful. They have more energy and fewer health problems. They’re happier and more productive at work. They also have a different relationship to the stress in their lives: They are more likely to view stressful situations as a challenge, not an overwhelming problem. They have greater confidence in their ability to cope with those challenges, and they are better able to find meaning in difficult circumstances.”

And she says she’s not talking about trivial, garden-variety stress like getting stuck in traffic. People who have used her techniques have found them most helpful when dealing with major life losses.

So I’m just throwing this out there, thinking that you too may want to learn more about this research and how it can apply to parents of children with disabilities.

In the meantime, I'm going to take a brisk walk around Spiral Garden.

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Note to self: Protect my mind

By Louise Kinross

A new study shows that parenting kids with disabilities over a long period of time jeopardizes cognitive function—especially memory—in mothers, but not in fathers, due to chronic stress.

The study—published in the Journals of Gerontology: Series B last month—used a large U.S. survey of parents from 2004 to 2006 to compare 128 parents raising disabled kids with 512 parents whose children did not have disabilities. The children with disabilities had autism, cerebral palsy, Down syndrome, attention deficit or intellectual disability.

Parents were tested on verbal memory and fluency, mental processing speed, reasoning, working memory and ability to switch their attention. Researchers also assessed parents’ physical and mental health, physical activity, social support and “negative parenting experience.” To determine the latter, participants were asked to rate how true six statements were for them. For example, “I feel good about the opportunities I have been able to provide for my children” and “problems with my children have caused me shame and embarrassment at times” and “it seems to me that family life with my children has been more negative than most people’s.”

Interestingly, at a younger age, mothering a child with a disability was associated with better performance on memory tasks, but by age 60 the pattern had reversed itself. Mothers who had higher levels of “negative parenting experience” were more forgetful, leading researchers to conclude that chronic exposure to parenting stress predicted cognitive decline for mothers of children with disabilities. Seventy-six per cent of mothers of kids with disabilities reported significantly higher levels of negative parenting experience compared with 46 per cent of the comparison group mothers.

The study found that mothers of children with disabilities tended to be much more depressed, less physically healthy and to feel less in control than mothers without disabled kids. They also had more problems handling their kids and less support from friends than women whose children do not have disabilities (yup, we’ve seen parent isolation in other studies about raising kids with disabilities).

Mothers with a strong support system, a sense of control and a history of regular exercise had better memories than those without.

This point is critical. “Keeping quality friendships, sense of control for life and [a] physically active lifestyle would help to protect these parents from accelerated cognitive aging,” said Jieun Song, a researcher at the Waisman Centre at the University of Wisconsin-Madison, who led the study.

I classify all of these things under the header “self-compassion.” In her new book Parenting Through The Storm, Ann Douglas says being kind to yourself in the way you would treat a friend is one of the best things you can do to support a child who is struggling (see this recent blog post). I know, it's counter-intuitive, isn't it?

But still, if you’re a mom of a child with disability, you’re probably thinking: “Oh great. Now, to add to my never-ending “to-do” list, which includes taking my kid to therapy and multiple specialist appointments, doing therapy exercises at home, advocating at school and in the community, making my home the ‘funnest’ place for playdates on the block, and doing my child's bathing and physical care, I need to step it up by going to the club regularly and being a social butterfly. To be honest, I’m not sure how you go about increasing number 3 in the study—the sense of control you have over your life! Isn’t that an illusion? Ha ha! But I digress.

So, how do you find the time and energy to get fit and healthy and socially connected when you’re already running flat-out 24-7 with your kid with special needs?

Today I heard Gretchen Rubin, author of The Happiness Project and Better Than Before: Mastering the Habits of our Everyday Lives, give a talk at the University of Toronto’s Rotman School of Management.

Gretchen spoke about her new book on habits—how we can develop good ones and break bad ones. I think we moms of kids with disabilities can benefit from some of her research and tips.

Good habits are “freeing,” Gretchen said, “because they eliminate decision-making and self-control” (in the case of the latter, if you’re like me you’ll find yourself lacking). Gretchen noted that if you’re in the habit of going to the exercise club at 6 a.m. every morning you don’t think about it, and you don’t fret about it, you just go.

So why is it so hard to drop bad habits or develop ones that we know would make us happier—or, in the context of the study on cognitive aging in moms of kids with disabilities, protect our brain power?

Because we don’t all have the same aptitude for forming habits or the same attitude towards them, Gretchen said. There isn’t one solution that works for everyone. “It’s important to figure out what kind of person you are” because that will determine which of 21 strategies, or a combination thereof, may work for you, she said.

One approach I think we mothers can try to help us work into our schedule habits that keep us physically and mentally healthy is called the “strategy of four tendencies.”

This is about how we deal with expectation—both outer expectations, like a work deadline, and inner expectations—and varies from person to person. Gretchen said we tend to have four responses to expectations. “Upholders” readily respond to outer and inner expectations and see them as equally important. “Questioners” will meet expectations if they agree they make sense. They hate arbitrary demands and need to turn an external request into an internal expectation to make it work. “Obligers”—the most common style, and certainly mine!—meet outer expectations well, but struggle to meet inner ones. Finally, “rebels” resist all expectations.

In talking about “obligers,” Gretchen noted that we’re often dissatisfied and frustrated because we’re so good at meeting other people’s demands but so bad at taking care of ourselves. To reverse this, we need to create “external accountability” for being kind to ourselves. That could mean paying for a class or coach, creating an accountability group with friends or similarly-minded people online, or coming up with funny ways that force you into good habits.

For example, friends who want to help each other work out regularly switch shoes at the end of their workout so they “have” to return for their next scheduled workout (otherwise the other person can’t exercise). One woman who wanted to get up at 6 a.m. every morning programmed Hootsuite to post an embarrassing message about her on Faceboook at 6:15 unless she got up and disabled it. Someone who wants to read should join a book club.

I think we moms of kids with disabilities should band together to create habit groups (except with a much cooler title)—perhaps online—where we encourage each other to do healthy things a certain number of times a week. What do you think?

Gretchen also shared other habit strategies.

For example, if you’re an “abstainer,” it means you do well when you give up a bad habit “all together.” This means not purchasing Haagen Dazs at the grocery store or keeping Hershey’s kisses in your office desk and deleting Candy Crush from your iPad.

Another tactic involves giving yourself “healthy treats. When we give ourselves healthy treats we energize ourselves and feel comforted,” Gretchen said. Stay away from food, drink and shopping in this category, and instead, be imaginative: listen to a favourite podcast or buy yourself some music.

When developing good habits, it's useful to consider goals as “milestones” rather than a “finishing line.” For example, many people commit to training for a marathon, then stop running. “That’s because the idea of the ‘finish line’ disrupts the habit,” Gretchen said. “You have to start over, and that’s hard.” So instead of telling yourself you have to lose 20 pounds, tell yourself you need to eat healthy forever.

Gretchen says “outer order contributes to inner calm” so use her one-minute rule to reduce clutter. If you can do it in less than a minute—hang up a coat or put some papers in the recycling, for example—do it. Instead of feeling you have to overhaul your entire house, “do it one minute at a time.”

Finally, “the strategy of convenience” involves making healthy things convenient, and unhealthy things inconvenient. For example, disable one-click shopping and put your cell phone in a closet instead of in your back pocket. “To change a complex habit you may need to use three to five strategies,” Gretchen said.

If you want to get a copy of a starter kit to help you begin a habits group with others, where you encourage each other, e-mail Gretchen at grubin at gretchenrubin dot com.

I know I'm going to!

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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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Why is it so hard?

By Louise Kinross

"Let me get this straight," my chiropractor said.

"You've had this pain in your neck and shoulders for 28 years, but you've only got $250 to fix it with?"

"Yes?" I said, with a plaintive expression on my face.

I sat on an examining table with my legs dangling in the air, like a child, and the doctor sat in front of me. I'd seen him for a series of sessions a year ago when my knees got really bad. Now my neck and shoulders, which I've had ongoing problems with, were burning. 

The night before I had to lay down on my back at 7 p.m. 

"It hurts too much to carry my head around," I explained to my husband, who was sitting in the other room. 

Shortly after that I called out: "I can't pick up my cell phone." 

"Why?" 

"It's too painful. I'm lying here with nothing to do. But it hurts too much to hold up the phone."

"Do you know how pathetic that sounds?" he said.

The chiropractor had taken a video of me to show that when I thought I was sitting with my shoulders down and even, they were completely wonky: one was way up and the other way down. When he felt my spine he said it wasn't "where it should be" and he wanted me to have an x-ray.

Why had I let things go so far? 

Just the week before when I saw my therapist I told her I was burnt out, even though I was taking a vacation day. "That's what you said the last time I saw you," she said. 

I was into the fifth week of a very exciting research project at work: nurses from across our three inpatient units were coming together for 90 minutes a week to write and draw about their emotional reactions to working in children's rehab. I was running the groups with two amazing researchers from the University of Toronto: one the illustrator in residence of the medical school, and the other heading up a new series of humanities courses at U of T, who was also  a Phd in English.

But it was something extra, on top of my regular work.

Sometimes I'd do a fantastic interview for BLOOM at work and I'd get so excited about it that I sat up late at night to finish it at home. I was also doing some personal writing at home, so after a long day of writing I'd come home with the intention of "writing" some more. 

"No wonder your shoulders are hurting, hunched over like that," my husband said as I sat at the dining room table tapping at a laptop in a distinctly unergonomic fashion.

In the morning there was the ritual of putting my son's brace on his leg and pulling him up to sit on the couch at a 90 degree angle. If I didn't take the time to lift properly, I wrenched my lower back. My husband had done this one too many times and refused to do it again, so we were no longer alternating.

"You can't keep adding more and more things to your plate," the therapist said. "You're already working full out at work and with the extra demands of your family. How about for the next three weeks you don't do any writing at night? Instead, you recover. You take a nap, or you read, or go out or do something that is completely relaxing. You take care of yourself and let yourself recover."

"Three weeks?" I said, already in a panic. "I don't think I can do it for three weeks. No, that won't happen. I'm 50 years old. Time is running out. Perhaps I can tell myself that I will pick certain days when I go home and I don't do anything at night. That sounds more realistic to me."

The therapist looked at me with a sad, knowing smile.

That night I got the stomach flu, and the next day I lay in bed, unable to go to work or do anything. It took me all weekend to recover.

A few days later I was sitting at the chiropractor's, telling him my sob story about my shoulders and neck. And it was sinking in that perhaps there wasn't a quick fix to running myself into the ground like this.

Two years ago I had a similar experience of being 'forced' into slowing down when I broke my arm badly. 

I know the research showing that parents of kids with disabilities have higher rates of physical and mental health problems. 

When my neck and shoulders seize up, I start to project pain into the future. If it hurts this much at 50, how much worse might it get? That freaks me out, because I have to be there to care for my son. I can't afford to be out of commission.

So here I am, 20 years after my son was born, recognizing that I still haven't learned this lesson properly. You know, the one where they say if you don't take care of yourself, you can't take care of anyone else?

And I need to.

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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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Are kids with 'behaviours' bad?

The other night I woke with a vivid memory.

I was in junior high taking band class. 

Because I didn't step up quickly when the horn instruments were handed out, I ended up playing the oboe. 

The oboe is a woodwind instrument that looks like a clarinet but has a long, double reed. In the Middle Ages it was played by huntsmen and shepherds. It has an unusual, haunting sound.

You can imagine what it was like to hear a group of students play a trumpet or french horn or oboe for the first time.

Our music teacher was kind, exuberant and patient. In time we made progress.

But one day something upset him. I don't remember what it was. Perhaps one of the students purposefully played out of key, or did something to grandstand.

I started to laugh, and I couldn't stop.

The teacher reprimanded me.

I was not a student who got in trouble.

I earnestly wanted to stop laughing, but I became nervous. Very, very nervous.

Now the class was silent and everyone was staring at me.

"Louise, you're being incredibly disrespectful," the teacher said.

"I'm sorry," I said, but giggles continued to splutter out of my mouth.

"Shhh!" whispered the other oboe player.

I was now red with embarrassment, but I couldn't stop.

"Louise!" bellowed the teacher. "That's enough!"

He thought I was defying him. He thought I was laughing on purpose.

I think the reason this memory came to me was because it shows how easy it is to attribute malice to behaviour that is actually prompted by anxiety.

My son has compulsive behaviours that emerge when he's anxious. He knows he's not supposed to do what he's doing, but he gets stuck in repetition. 

I think our world is most unaccepting of difference when it involves behaviour. We're most uptight about how people act, more than we are even about a person's abilities or how they look. 

It reminds me of a study published in Autism that looked at parenting stress in two groups: one of mothers of preschoolers with autism and the other of mothers of preschoolers with developmental delay. The study found that challenging behaviour was more stressful than a child's need for greater physical care, such as feeding, dressing and toileting.

People have greater compassion for parents who have to help their child with everyday activities other kids have mastered than for parents who are supporting a child who doesn't "fit" social norms.

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How misguided values make us sick

A number of stories crossed my desk recently that made me think about how our culture assigns value to people and how this disadvantages families of children with disabilities.

First I read this New York Times piece about how we tend to equate a person’s income with their inner worth: You are the money you make.

This measuring stick not only divides people socially, the authors say, but it harms them at a personal level, making some meaner and others sad and fearful. 

A study referenced suggests mania and narcissism are the byproduct of our efforts to achieve economic status, while anxiety and depression are a response to poverty.

These tendencies are magnified when the gap between rich and poor widens.

For example, the authors note that mental illnesses are three times as common in developed countries where the differences between rich and poor are bigger.

“As larger differences in material circumstances create greater social distances, feelings of superiority and inferiority increase,” they write.

Then I read this study that uses the 2010 Ohio Family Health Survey to look at differences in financial and psychological stress levels between parents caring for children with and without disabilities.

The study shows that children with disabilities are 3.4 times as likely to live with parents with high financial stress and very high psychological stress than children without disabilities. This finding was based on surveys with 210 households with a child with disability and 1,614 households with a child without disability.

Because U.S. parents are more likely to have to cut back on their work hours or leave a job completely to care for their child with disability, they’re more likely to experience significant financial problems. Side note: Yesterday we read this story about a single mom who was fired because she stayed home with her child with special needs on a snow day.

In the Ohio study, parents caring for children with physical limitations were almost three times as likely to be unable to pay for basic needs; two times as likely to have used up most personal savings; and two-and-a-half times as likely to be unable to pay household bills.

Those caring for children with behavioural, emotional or developmental problems were almost two times as likely to have problems paying for medical bills; twice as likely to be unable to pay for basic essentials; and 1.7 times as likely to have used up personal savings.

Overall, the families of children with disabilities were 4.2 times as likely as those without to be classified as having serious depression and twice as likely to need treatment or counselling for mental health, substance abuse or emotional problems.

They're facing two cultural stigmas: The idea that disability somehow reduces a person’s value, and the notion that reduced income, as noted above, further erodes one's worth.

Yesterday I read this blog post by Joel Yanofsky, author of Bad Animals, a memoir about raising his son Jonah, who has autism.

In it, he recounts a situation many of us can relate to. You’re at a party, talking with someone you’ve never met, and they begin fretting about which university their child is going to get into. It’s a kind of twisted social-ranking game for party-goers, because you know that as soon as this parent gets the largely feigned angst out of their system, they’re going to turn to you and ask about your child’s university prospects.

Joel writes: “She began describing her son’s efforts to find a good CEGEP – CEGEPs, here, are the equivalent of U.S. junior colleges – once he graduated from high school. I knew, of course, where the conversation was headed and braced myself.

“Your son must be thinking about CEGEP, too,” she said.

“Jonah is on the autism spectrum,” I said. “He attends a special needs school. College isn’t likely to be in the picture.”

A long silence followed; it seemed long anyway. There wasn’t much for her to say. She hadn’t said anything wrong. If anything, I felt a little bad for her. I’ve come to terms with the fact my son has autism, but that doesn’t mean I’m not brought up short, on occasion – reminded all of a sudden that your life, his life is going to be very different from the lives of other people. It’s what I call the “what-if-moment” – the moment you can’t help wondering what if your son didn’t have autism. What would his life, your life be like?”

The crux of the matter is that families like ours are different. Our kids may or may not achieve conventional success. Hopefully they’ll spur us to question what a good life is, and open a window in the minds of those around us too. Maybe we'll help others see that our culture's values could use a tweaking. Instead of focusing on how much we can get in life, perhaps we can focus more on how we connect.

Following the death of actor Philip Seymour Hoffman this week, I saw this fascinating interview he gave with the philosopher Simon Critchley. The two chat about what it means to be happy.

Hoffman quickly discredits the idea that happiness is pleasure. “I would definitely say pleasure is not happiness,” he says. “There is no pleasure that I haven’t actually made myself sick on.

“I think I’m happy when I’m with [my children] and they’re okay,” he continues. “Something happens in that moment when they’re okay and that’s an important thing. When I see them enjoying each other and then they let me enjoy them in turn…that brings a feeling which I would say is happiness.

To which Critchley suggests that happiness isn’t something internal or something we can stockpile, like money, but that “it lies without. I think it lies in our very specific relationships with people.”

Which helps explain, I think, why we parents find joy in our children, regardless of their abilities or health. There’s something about the presence of our children—our relationship with them, separate from what they can do, how well they do it, and the way other people see and evaluate them—that can fill us with contentment.

If only we didn’t have to justify them to others.

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Dear Compassion

I just returned from a moving workshop at Mount Sinai Hospital called Postcards from the Edge: Addressing Compassion Fatigue in Note Form. 

It was given by Ronna Bloom, the poet in residence at Mount Sinai.

The focus was compassion fatigue, the natural stress that arises in health workers caring for, and wanting to help, someone who is suffering or traumatized. 

Ronna described it as "the cost of caring for others in emotional pain, exposure to traumatic events or hearing clients talking about their trauma, and witnessing suffering without being able to improve the circumstances."

Symptoms include re-experiencing patient trauma; avoiding reminders of it; and emotional numbing.

She described empathy as the cornerstone of good care: "Opening our hearts and minds to patients." But it is this openness that also makes health workers vulnerable to compassion fatigue.

Ronna said that writing poems can be a way for professionals to "support, express, or dump what they are carrying, or to cradle or hold it." There is something about the process of writing our experience down on paper that may allow us to carry it in a different way.

This struck me as relevant to parent caregivers of children with disabilities.

Ronna had us do some writing prompts, but began by giving us these five brilliant rules:

1. Don't think
2. Keep your hand moving
3. Don't censor
4. You are free to write the worst crap possible
5. You don't have to share

I think the most important are number 1—don't think—and number 3—don't censor. Of course knowing that you don't have to share what you write frees you up to write in this way.

One of the exercises involved writing "towards someone or something, a concept."

It could be "Dear Next Patient" or "An Open Letter to Compassion." This was an opportunity to "respond to our world without sharing."

I found this to be very therapeutic. By focusing on feeling (and silencing critical thought) I put something down that helped me see more clearly how I felt.

Some participants shared their writing and the emotion felt by these health professionals as they described their caring work was palpable. "A sense of helplessness is at the core of compassion fatigue," noted one participant. 

I think these techniques can be useful for parents and hope to learn more about them.

In the meantime, I'll remember that if I feel heavy with emotion or angst, writing freely about it can release it from where it's being tightly held within my body, and allow me to see it in a new way.

This workshop was offered through the Health, Arts & Humanities program at the University of Toronto.

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The 'perfect' holiday: make it a family tradition

By Lori Beesley
Holland Bloorview family leader

At this time of the year, other children are putting pencils and crayons to paper, writing their letters to Santa. Our son is getting excited about Christmas too, but he has his own reasons. For Mitchell, it’s all about the anticipation of the day rather than the reality.

Mitchell has a genetic condition called Fragile X syndrome as well as autism. Because he has Fragile X, he is developmentally delayed and is unable to write a letter to Santa, or anyone else. So why is he excited about Christmas?

The idea of having everyone in the family over for the day makes him happy. As soon as the lights and decorations start to appear, Mitchell knows Christmas is coming. He’ll pretend to call family members on the phone, inviting them to come over for Christmas and spend the day together.

The other night I told him that my brother was sleeping over on Christmas Eve. He was very excited. He immediately picked up the phone and had a good five-minute 'pretend' conversation with his Uncle Terry, telling him to make sure he brings his toothbrush and pajamas when he packs for Christmas Eve. There was no mention of gifts or presents, since those are secondary for Mitchell. The joy of spending time with the people closest to him is what makes Mitchell’s day special.

That said, Christmas time can pose its own unique challenges for us as a family. Mitchell can become overwhelmed if visitors to our home aren’t those he was hoping for, or if there are too many.

We recently hosted five couples for dinner and minutes before they arrived, Mitchell got very upset, leaned his back against our locked front door and kept repeating: “No one in my house.” He recently turned 18 and is taller and stronger than me, so simply picking him up and removing him is no longer an option. Lots of distractions and a promise of a special treat of watching TV in Mom and Dad’s room helped resolve the situation.

Going to other peoples’ homes usually proves more successful, but we need to do lots of prep work to make this pleasurable for everyone. We prepare Mitchell by telling him what to expect and who will be there. We bring along his Nintendo DS and our iPad and make sure both are fully charged. Within minutes of arriving, Mitchell has usually scouted out a quiet room or corner and stays put for the remainder of the visit. At some point, his internal “It’s time to go home NOW” switch is thrown and we need to be ready to move pronto. On a positive note, his ability to tolerate longer evenings out has increased over the years so there is hope!

Another issue we face is managing our family’s expectations of the holidays. It’s our job as parents to try to make sure our children enjoy this special time of year. But to do that, we need to know what a great time looks like for our particular child, given their unique abilities and sensitivities, and balance that with our family’s expectations.

Years ago, we used to celebrate Christmas at my brother-in-law’s home. It was a loud, boisterous home with everyone talking over each other. It was the exact opposite of the environment Mitchell was most happy and comfortable in. When it came time to open gifts, my sister-in-law wanted everyone to be in the same room, taking turns, eating and laughing together.

But I knew better.

I quietly led Mitchell into another room, popped in a new movie he had received that morning at home (a yearly tradition) and set him up with a snack and drink. He was in his element and had a grin from ear to ear. My sister-in-law however, was not happy.

She was upset that her idea of the perfect family opening gifts together wasn't happening.

“But we should all be together," she said. “That’s the way it’s supposed to be.” She felt badly that Michell was all alone. Mitchell must be with us, she insisted. I had to tell her, in no uncertain terms, that Mitchell was not joining us. It was frustrating to have to explain to her why Mitchell was happier alone in a quiet room, watching his movie, and to convince her that this really was best for Mitchell and for everyone. However, as educating extended family is an annual occurrence, it does get easier as the years go by.

While your family may or may not get why you set things up at celebrations the way you do, you know what’s best to ensure your kids are happy and safe. And along the way, maybe we can all start a new tradition or two!

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