Mental Health Champions: Why & How Author Jan Stewart Is Helping To Champion Mental Wellness
An Interview With Michelle Tennant Nicholson
Humour has been an important ingredient in my coping toolkit. I chuckled when one of Andrew’s teachers explained to him that some school rules were set in stone, and he literally asked, “And where is the stone kept?”. I giggle at Ainsley’s uncanny ability to make up words each evening during Boggle games that are accepted by the Scrabble dictionary. I find it important to poke fun at our lives and not always take them too seriously.
As a part of our series about Mental Health Champions helping to promote mental wellness, I had the pleasure to interview Jan Stewart.
Jan Stewart is a highly regarded mental health governance expert, author and advocate who currently chairs Kerry’s Place Autism Services, the largest autism services provider in Canada. Her brutally honest memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness, which will be published by Barlow Books in March, details her non-stop, emotional roller coaster life parenting two children with multiple mental health disorders. Her mission is to inspire and empower parents to persevere, have hope and not give up, as well as to better educate their families, friends, health care professionals, educators and employers.
Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit. Can you tell us a bit about how you grew up?
I am extremely fortunate to have grown up in a warm, loving family. I was born in New York City to adoring parents who soon moved to the suburbs to raise me and my younger sister in one of the best school districts in the country. We lived in a lovely home, enjoyed vacations in the sun, ballet and acting lessons, summer camps away and, above all, a close-knit, happy family. My parents instilled a strong work ethic in my sister and me. We never questioned their high expectations, and we succeeded in just about everything we did.
After attending university, I worked in the not-for-profit sector for several years before deciding to develop my business skills. I received my MBA and pivoted my career, working on Wall Street for ten years. It was during this period that I met my husband, a Canadian who lived in Toronto and who shared my values of hard work, kindness, curiosity and giving back to others. We were married exactly one year after we met, and we decided to start a family the following year.
My husband and I had great hopes for the future as young parents. We had on rose-coloured glasses, having never faced significant difficulties in either of our lives, and we assumed that our children’s lives would follow the same successful pattern as ours had. Words like autism, Tourette Syndrome, Obsessive Compulsive Disorder and Attention Deficit Disorder had never entered my vocabulary before. It was a shock to discover that not one, but that both my children had multiple mental health disorders, sending me on a never-ending roller coaster ride.
You are currently leading an initiative that is helping to promote mental wellness. Can you tell us a bit more specifically about what you are trying to address?
Having raised two children with complex mental health disorders, I believe in the importance of inspiring and empowering parents of similar children to persevere. There are so many parents who are struggling and don’t know where to turn or how. They feel isolated, lonely, frightened and/or frozen. Endowing them with the insights that I have learned through my lived experiences is the reason I wrote Hold on Tight: A Parent’s Journey Raising Children with Mental Illness. I cannot think of a more worthwhile endeavor than to help parents understand that they are not alone and that they can do it. There is help, there is hope, don’t give up. Hold on tight!
Can you tell us the backstory about what inspired you to originally feel passionate about this cause?
The backstory that inspired me to both become engaged in mental health advocacy and to write Hold on Tight is a story that continues today, and will throughout my life. Almost from the time my son Andrew was born, I felt in my gut that something was “different”. He had no internal controls about when to stop feeding, he refused to play in his crib, didn’t talk to himself, constantly flapped his hands and feet and was difficult to soothe. As he grew, he was constantly in motion, easily distracted, unable to deal with changes in activities or hold a pencil. The pediatrician repeatedly told me there was nothing to be concerned about, that Andrew was just fine and that I was a AAA overly-vigilant parent from New York who just needed to calm down. In other words, I was the problem.
That is how my journey started. And down the abyss I went. At age nine, Andrew’s mental health disorders suddenly declared themselves in full force. Seemingly out of nowhere, this normally gentle, loving boy raged for two hours almost every day, screaming at the top of his lungs, swearing, ranting and kicking everything and anything in his way. A few weeks later, he started engaging in non-stop compulsive rituals. He “had” to touch the floor a set number of times, flick a light switch on and off 14 times, put his teeth on poles and gnaw door handles to relieve the disturbing thoughts swirling around in his brain; these thoughts included the fear that his sister would be kidnapped or that my husband and I would die. Unfortunately, the rituals only temporarily relieved his distress each time and had to be repeated endlessly. And they became more bizarre as they quickly escalated: he got down on all fours on the subway and licked the filthy floor…he brought home garbage and glass shards and hoarded them under his bed…he put knives in his mouth in order to “feel” them. Can you imagine my terror? I felt like I was living in the Twilight Zone.
And when his younger sister Ainsley started exhibiting different but equally out of control behaviours, it was clear that she too needed specialized help.
Gifting parents with key insights that I have learned along the way has become my raison d’etre. I am passionate because of my heroic children.
Many of us have ideas, dreams, and passions, but never manifest them. They don’t get up and just do it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and do it? What was that final trigger?
I initially thought about writing Hold on Tight as a catharsis for myself. But as more and more parents of children with mental health disorders reached out to me for guidance, my “Aha Moment” arrived. Many of these parents were desperate, terrified and at the end of their ropes. Others were simply lost. I strongly believe in giving back, and helping others is a core part of who I am. The idea of writing a book for parents that could help them and their children lead more fulfilling lives deeply resonated with me. I know how much I would have benefited as a young parent from having a deeper understanding of what other families were experiencing, how they handled their crises, what worked and didn’t, and the key insights and life lessons in my book.
Can you share the most interesting story that happened to you since you began leading your company or organization?
Let me recount one story about each of my children.
After Andrew graduated from high school, he wanted to become a cashier at our local grocery store. My husband and I didn’t think he could handle the job, given the rapid pace of the job, the need to count change and the stresses of dealing with so many customers. We suggested he become a grocery stocker instead. But Andrew was adamant and insisted that he could do it…and he was right. He turned out to be a fantastic cashier. He memorized the food codes and excelled at customer service. I remember the joy I felt one afternoon when I went to the store and, to my surprise, found five people waiting on Andrew’s line, with four other cashiers without customers. When staff tried to redirect them accordingly, every single customer insisted on waiting for Andrew, who engaged with them, showed interest in their lives and infected them with his joy of life.
In Ainsley’s case, her grit and determination are inspirational. Her mental health disorders include Tourette Syndrome, anxiety disorders, Attention Deficit Disorder and significant learning disabilities. She struggles with executive function/organization, abstract concepts and attention to detail. Yet she is extremely self-aware and has been able to steer the course of her career in the right direction for herself. She would not have done well at an office job, sitting at a desk. As a teenager, she enjoyed her summer jobs as a camp counselor, particularly excelling at helping children experiencing behavioural challenges. She has always loved helping her autistic brother. In spite of her own learning disabilities, she became determined to attend university and become a Child and Youth Counselor. She succeeded, and for the past seven years, she has embraced her work and has distinguished herself as a gifted professional. Her will to succeed is breathtaking, and I am convinced that her lived experiences have played an instrumental role in her success.
None of us can be successful without some help along the way. Did you have mentors or cheerleaders who helped you to succeed? Can you tell us a story about their influence?
There have been many angels who have helped me succeed. There were — and still are — medical angels, such as neuropsychopharmacologist Dr. Joseph Biederman at Mass General Hospital who has been a saviour, developmental pediatrician Dr. Till Davy who wrapped us in his warm embrace, psychiatrist Jinous Hamidi at Canada’s Centre for Addiction and Mental Health whom Ainsley believes saved her life, and clinical psychologist Jeff Sherman, who guided Andrew throughout his youth. They have inspired me not only with their expertise but with their empathy and caring. They have lifted my spirits and kept me going when I thought I couldn’t.
There were academic angels who guided the children with compassion, understanding and even humour, providing invaluable emotional support and accommodations at schools like The Douglas Academy and Montcrest School in Canada, and Eagle Hill School in Massachusetts. All of them believed in the children and turned potential failure into memorable successes.
There have been personal angels. My mother was my biggest cheerleader. She was frankly more concerned about me than about the children but kept spurring me on, encouraging me and reminding me how special and strong I was. Valued friends have stepped up to take on the significant future responsibility of becoming Andrew’s guardians and advisors when my husband and I can no longer continue to do so. And there is my husband, who has been my rock and partner throughout this emotional journey.
Above all, however, there are my children. They inspire me every day and have propelled me forward. My book Hold on Tight is a love song to them.
According to Mental Health America’s report, over 44 million Americans have a mental health condition. Yet there’s still a stigma about mental illness. Can you share a few reasons you think this is so?
In our society, people who are “different” are misunderstood, seen as inferior or even dangerous. Mental illness can be elusive: it’s hard to define, varies from person to person and cannot be measured the way most physical disorders can be. A lack of understanding can cause fear. A lack of awareness can reinforce inaccurate stereotypes and impressions. I have talked with parents who say their families and/or friends actually believe that their children are contagious or a stain on the family name. I have overheard comments that people living with mental illness are morally deficient. The fear of the unknown remains a powerful contributor to stigma.
If mental health disorders remain hidden from discussion, misunderstandings grow and we cannot move forward. We need to shout out and help others understand there is nothing to be afraid of and that these disorders are chemical imbalances of the brain, similar to people living with epilepsy and diabetes in other parts of the body. That’s why our family agreed to participate in the award-winning Canadian documentary OCD: The War Inside years ago. The documentary tells the poignant stories of four individuals with severe Obsessive Compulsive Disorder, including Andrew. Twenty years later, he continues to receive grateful messages on social media from people around the world after they have watched his story on YouTube.
Although there is greater awareness around mental health today, the media continues to sensationalize mental illness and portray violent or evil mentally ill characters. I think of the film Fatal Attraction, where Glenn Close’s character, who had borderline personality disorder, was obsessed, aggressive and dangerous. I love the television series Law and Order, but it often portrays criminals with mental illness, further perpetuating negative stereotypes. And I think of the media’s focus on violent offenders who are experiencing homelessness, or on the small minority of people with Tourette Syndrome who have coprolalia, where they repeatedly blurt out obscenities, positioning them clearly as “crazy”.
One of the biggest barriers to breaking stigma around mental illness is that individuals living with mental health disorders are often vulnerable and unable to advocate for themselves. This is gradually changing as people with lived experience are increasingly organizing themselves and advocating. But the community remains overly fractured on my view, lacking the needed power, cohesion and organization. Mental illness is the last frontier. We are doing better but we have a long way to go.
In your experience, what should a) individuals b) society, and c) the government do to better support people suffering from mental illness?
There is so much that can be done and needs to be done. As individuals, we need to become better educated and emotionally support those living with mental health disorders. We need to address the elephant in the room head on, rather than running from it, giving the person the opportunity to talk openly. We need to listen, without judgement, ask if there is anything we can do to help and give words of hope and encouragement while being realistic. We need to be respectful and compassionate and treat every individual as an equal.
As a society, we must increase connectivity. Social connections combat isolation and loneliness and enhance feelings of belonging and worth. We need to spread facts about mental health to fight stigma. Health care professionals need greater training about these disorders. Schools need better resources for early intervention. The private sector needs to shoulder a greater responsibility to give individuals living with these disorders more opportunities, embracing truly inclusive workplaces. And our universities need to train more psychiatrists and psychologists, not only to deepen the pool of qualified professionals but to facilitate access, shorten wait times, and make the system less complicated to navigate.
Governments have a vital role to play as well. These include developing and expanding anti-discrimination and anti-bullying policies, increasing access to health care and widening insurance coverage. Given the economic plight of many people with mental health disorders, governments need to ensure that economic support is increased, along with greater investments in affordable housing and childcare. Employers should be rewarded with incentives for hiring those living with mental health challenges.
So much of this is about partnership and inclusivity, about treating every individual with respect and dignity, and about caring for each other as we care about our own.
What are your 5 strategies you use to promote your own well-being and mental wellness? Can you please give a story or example for each?
Writing my book Hold on Tight has been a release for me. As I mentioned earlier, I’m on a mission to inspire and empower parents of children with mental health disorders to have hope, persevere and not give up. Recounting our non-stop, emotional journey has made me proud of my children’s unbelievable determination and of my own strength and resilience. And detailing key insights for parents — from talk openly to your child to reset the expectations of your life and insist on an integrated partnership with everyone involved in your child’s care, to name just three of them — should really help parents and their children lead more fulfilling lives.
Taking care of my physical health is another key strategy. Fitness has always been important to me, and I find that my time on the treadmill allows me to think through my problems and gain perspective. I am the first to admit, however, that I ignored healthy eating for far too long. I had a high-pressure career and persevered through the children’s devastating challenges at home but something had to give. I have always been thin, and I started skipping meals or grabbing ice cream and candy to get me through each day. I vividly remember consuming an entire pint of Haagen Dazs coffee ice cream during one of Andrew’s screaming rages. I am convinced that my eating, combined with all the stresses and pressures in my life, contributed to my diagnosis of breast cancer twelve years ago, as well as additional health problems. I finally scared myself enough to switch to a healthy Mediterranean diet, sneaking in treats much less frequently. I feel stronger and better positioned to care for the children, as well as myself.
Humour has been an important ingredient in my coping toolkit. I chuckled when one of Andrew’s teachers explained to him that some school rules were set in stone, and he literally asked, “And where is the stone kept?”. I giggle at Ainsley’s uncanny ability to make up words each evening during Boggle games that are accepted by the Scrabble dictionary. I find it important to poke fun at our lives and not always take them too seriously.
And, as hard as it is sometimes, I try to be kind to myself. I quietly compliment myself on my fortitude and perseverance. I also try to forgive myself for my mistakes. I still shudder at the memory of the time I left the children at home alone for ten minutes and, upon my return, found Ainsley outside in the snow, barefoot, frightened and sobbing due to her brother’s terrifying rage. I felt like an awful parent.
Finally, I find it important to carve out part of my life as my own, not dedicated to the children or my husband. While everyone can benefit from the occasional distance from their partner, this is critical for parents of special needs children. We can all too easily get lost in the morass of our children’s struggles. When I don’t take time for myself, I run myself down and face the risk of burn-out. Being alone allows me to regain perspective on the issues that our family faces. Going for a walk, taking a bath, reading a book or playing bridge helps me refuel and rebuild my own identity.
What are your favorite books, podcasts, or resources that inspire you to be a mental health champion?
When Andrew’s Obsessive Compulsive Disorder burst out suddenly at age nine and I was desperately searching for insights and answers, Judith Rapoport’s book The Boy Who Couldn’t Stop Washing made a huge impression on me. She recounts the seemingly bizarre experiences of dozens of her patients, along with potential treatments and outcomes. From there, I became enamored of Oliver Sacks’ The Man Who Mistook His Wife for A Hat, with short essays and case studies of different neurological disorders. I continue to actively read about mental health disorders, and I am delighted to have just finished reading Penny Williams’ 2014 book Boy Without Instructions: Surviving the Learning Curve of Parenting a Child with ADHD.
If you could tell other people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?
To me, giving back means having an impact that extends beyond myself and my family for the greater good. It gives my life meaning and hopefully encourages others to do the same in whatever way works for them. If my book Hold on Tight helps parents of children living with mental health disorders, I have paid it forward, with love.
How can our readers follow you online?
Readers can follow me on Instagram and Facebook at janstewartauthor, and I post about mental health every day. Reach out if you have any questions or need parental advice!
This was very meaningful, thank you so much. We wish you only continued success on your great work!
About the Interviewer: Inspired by the father of PR, Edward Bernays (who was also Sigmund Freud’s nephew), Michelle Tennant Nicholson researches marketing, mental injury, and what it takes for optimal human development. An award-winning writer and publicist, she’s seen PR transition from typewriters to Twitter. Michelle co-founded WasabiPublicity.com.
