An Interview With Stephanie Greer
Trust your gut as a parent. You know your child better than anyone else. If you think something is seriously wrong, it generally is. Of course it’s important to listen to health care and parenting experts, but if what they say doesn’t resonate with you, keep looking. David and I had to learn that most doctors are not trained and qualified to deal with complex mental health disorders. The constant rebuffs from our doctor perplexed me, made me despondent and took their toll on my usual confidence. It was only after a few years — although it seemed like an eternity at the time — that I came to understand that he was well-meaning but in no position to help us and hadn’t even recognized the need to refer the children earlier to appropriate specialists. Be tenacious: this doesn’t mean being overly aggressive, but when you are not comfortable with what one professional tells you, seek another opinion. Don’t settle for less.
Living with and caring for a child with mental illness presents a unique set of challenges, triumphs, and insights. In a world where mental health is increasingly at the forefront of social discussions, the need for awareness, support, and understanding is more crucial than ever. Our families are on the front lines, experiencing the everyday realities that come with this journey. As a part of this interview series, I had the pleasure of interviewing 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 has been honoured with the Mom’s Choice Award®, details her non-stop, emotional roller coaster life parenting two children with multiple mental health and neurodevelopmental disorders. Her mission is to inspire and empower parents to persevere, have hope and know they are not alone, as well as to better educate their families, friends, health care professionals, educators and employers.
Thank you so much for joining us in this interview series! We really appreciate the courage it takes to publicly share your story. Before we start, our readers would love to “get to know you” a bit better. Can you tell us a bit about your background and your childhood backstory?
Happy to share. I was born and raised in New York in a warm, loving family. My parents not only gave my sister and me every opportunity they could but instilled in us strong values of integrity, honesty, kindness and perseverance. And they taught us that we could be and do whatever we wanted in life as long as we believed in ourselves, worked hard and had a strong will to succeed.
I did well in my studies, was a serious ballet student, and spent summers as a teenager working in France and becoming bilingual. At Northwestern University, I studied speech pathology, followed by obtaining a graduate degree in deafness rehabilitation from New York University. After working for two years in Washington, D.C. for a national disabilities coalition, I came to believe that disabled people themselves would be the best advocates, and I made a 180 degree turn and obtained my MBA in Finance and Accounting from Columbia University. This was followed by ten years in corporate and investment banking, at which point I joined the global executive search firm Egon Zehnder. Over the next 25 years, I rose to become Managing Partner of the Toronto office and one of the most senior female Partners worldwide. I also had the opportunity to join the Global Executive Committee for a few years.
When I met my husband David, who is Canadian, I found he had been raised with the same values I had. He too had his MBA and a career that he was passionate about. After six months of dating, we became engaged, and I moved to Toronto right after our wedding. We naively assumed that our children would enjoy the same successful lives as we had. Those rose-coloured glasses were about to be knocked off!
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
Winston Churchill’s quote “When you’re going through hell, keep going” resonates with me. Finding out that we had not one, but two children with multiple, complex mental health and neurodevelopmental disorders came as quite a shock and turned our lives upside down. It’s been a harrowing journey, one that continues today. Yet this non-stop roller coaster ride has taught me important life lessons about the importance of hope and perseverance through the most difficult of times. Strength and resilience are borne out of adversity, and each of us can choose to embrace life or be defeated by it: I choose to embrace it.
Let’s now shift to the main part of our discussion. Can you share with us the moment you realized your family’s journey was going to be different due to your child’s mental illness, and how did this realization transform your approach to family life and parenting?
From almost the time Andrew and Ainsley were born, David and I felt in our guts that something wasn’t right. Andrew’s hands and feet moved in constant circular motion. Unlike our friends’ babies, he never talked to himself, gurgled or played in his crib. And he had no self-control when it came to feeding. We actually did an experiment when he was six months old to see how many bottles of milk he would consume if we didn’t control his intake: after downing five straight bottles, we were scared and stopped him.
Every time I raised a concern with our doctor, however, he told me to calm down, that the children would be just fine and that I needed to stop being an overly vigilant, AAA parent from New York. Essentially, I was the problem. I was a first-time parent, and I trusted his expertise. Too bad I didn’t know better.
Over the next several years, David and I had increasing concerns about both children. There was impulsivity, distractibility, vocal and motor tics and learning disabilities. Andrew couldn’t maintain eye contact, had terrible difficulty with change and transitions between activities, and didn’t understand abstract concepts. Ainsley was much easier as a baby and toddler, but once she started school, she was out-of-control: disruptive, unable to sit still, shouting out and interrupting. She was constantly sent to the principal’s office. This was paired with overwhelming anxiety and the inability to read her friends’ social cues, leading her to gradually lose every neighbourhood friend she had.
Yet our doctor continued to discount my concerns. “They’re just sensitive children, under a bit of stress”, he kept repeating.
Shortly after Andrew’s ninth birthday, however, for no reason that either he or we could identify, he erupted into a frightening two-hour meltdown. He morphed from his usual gentle, loving demeanor into a monster I didn’t recognize. He started screaming, ranting, punching holes in walls, kicking and lashing out at anyone and anything in his way. This continued for the next nine months, almost every day. Within one month, he also suddenly started engaging in non-stop compulsive rituals. These were driven by irrational, distressing thoughts that his sister would be kidnapped or we would be murdered. He knew these thoughts made no sense, but his brain overrode reason and drove him to touch walls repeatedly for hours or not be able to walk through doors for well over 30 minutes. And the rituals quickly escalated. He rubbed his head against shrubs and car tires, as well as getting down on all fours to gnaw the filthy subway floor.
Andrew told me he felt he was going crazy and wanted to die. And Ainsley left me a note that said, “Mom, I know I’m a bad child, but I can’t help my out-of-control behaviour.”
I felt like I was in the Twilight Zone. I was frightened, frozen, felt isolated and alone, and I didn’t know where to turn or how.
Was there a turning point for you when things started to change for the better? Can you please share a story?
Andrew and Ainsley were in such distress that I promised them I would never stop until I found the right help. The silver lining was that their behaviours and symptomology were finally so clear that they were both fully diagnosed at that time: Andrew with autism, Tourette Syndrome, Obsessive Compulsive Disorder, ADHD and learning disabilities, and Ainsley with Tourette Syndrome, ADHD and learning disabilities, along with severe mood and anxiety disorders.
Many caregivers find their children’s diagnoses to be overwhelming. For me, the diagnoses were a validation of my concerns that allowed us to start getting Andrew and Ainsley the help they needed. It hasn’t been easy. We’ve had to work hard to navigate our complex health care system and find the right psychiatrists and psychologists. We’ve had to work hard to find schools willing to truly partner with us and, as Andrew and Ainsley became adults, to find inclusive employers. We’ve faced new challenges at every stage, from complications with co-occurring conditions and medications to years-long waitlists for supportive housing.
Yet with the right help, came changes for the better. It was such a joy to watch Andrew start to successfully battle his OCD through medications and Exposure and Response Prevention therapy so that he was no longer consumed by his obsessive thoughts and compulsive rituals 24/7. And when his doctor started him on a powerful anti-psychotic medication that stopped those frightening meltdowns in their tracks, I was flooded with relief. I knew we still had a long way to go, but we were finally on the right path.
Navigating mental health challenges can be taxing for the entire family. Could you discuss the support systems that have been most effective for you and your child? Who are some of the important people in your life who have been on this journey with you? How have they either helped you or made things harder?
Mental health challenges affect every family member. There’s going to be fear, anger and resentment. I cannot tell you how many times I’ve looked at myself in the mirror and quietly asked, “Why me? Why us?” But the old adage that it takes a village to raise a child is so apt.
As I write in Hold on Tight, there have been many angels in our lives. Each of them has played an extraordinary role helping us overcome frightening adversity and move forward with hope. These include:
- Medical angels, particularly the children’s psychiatrists and psychologists, each of whom has bolstered us, believed in us, partnered with us and given us hope;
- Academic angels, ranging from Andrew’s fourth grade teacher — whose empathy included insisting I go to work every morning, understanding that it gave me desperately needed respite — to the children’s principals and teachers who showed compassion, understanding and humour and who turned potential failure into memorable success;
- Employment angels, especially the telecommunications company Rogers Communications, where Andrew has worked over the past five years. They embrace inclusion and diversity and model what it means to understand, accommodate and value all employees; and,
- Personal angels, including our families and a few very special friends who have agreed to be the children’s future guardians and trustees.
Above all, there is David, who has been my rock and partner throughout this endless journey, as well as Andrew and Ainsley who inspire me every day. Their grit, determination and optimism are breathtaking. Despite overwhelming challenges, they embrace life head-on. They are my heroes.
What does a typical day in your life look like, and how do you adapt daily routines to accommodate the needs of your child while also ensuring the well-being of the rest of the family?
There is no typical day in our lives, although there is no question that the children’s needs always come first. My phone is by my side 24/7 and should either child need me, I drop whatever I am doing for them.
Now that the children are grown, our daily routines are pretty set unless one of them is in crisis. Both children have wonderful full-time jobs and live just five minutes away from us. Every morning, I get up at 5:00 am, exercise, eat breakfast and then wake Andrew. I prepare his meals, ensure he takes his medications and oversee him getting ready for work. And Ainsley and I write down her To Do list every evening to minimize her forgetting important appointments (even though they are in her calendar) and chores such as doing her laundry or picking up her medications.
And partnerships with the professionals involved in the children’s care remain critical. I spend time each week communicating with their health care providers, as well as with Andrew’s employer.
Vacations look different in our family. Neither David nor I has family in Toronto. We will never have the luxury of going south for the winter or travelling together for long periods of time. We often spell one another and take separate holidays: David on golf trips with friends or to his sister’s cottage in the Laurentians north of Montreal with Ainsley while I stay in Toronto with Andrew, who doesn’t do well with change and doesn’t like to leave home. I travel to bridge tournaments and enjoy an annual spa weekend with Ainsley. Together, David and I try to take long weekends away when we can, particularly when Ainsley can give us respite and watch over Andrew. And we do our best to adhere to a weekly date night.
I also ensure that I take care of myself. After years of ignoring my health, eating candy and junk food just to get through each day, I “woke up” after several health scares ranging from kidney problems and high blood pressure to breast cancer. I now eat much more healthfully and try to adhere to a Mediterranean diet, and I exercise almost every day. David does the same with golf, skiing and exercise.
As I write in Hold on Tight, ‘I still have days when I am so exhausted, so drained of energy, that all I want to do is curl up ion a hole and disappear. In the worst of times, I feel like someone has punched me in the stomach, and, just as I am about to get up, another swing comes at me hard. In better times, my life is a constant vigil in which I am always on guard, holding my breath and trying not to wait for the next crisis. There is little relaxation. I have learned to try to enjoy the good times, knowing that they won’t last, and to equally remind myself during the bad times that they, too, will lift.”
What are 5 things you learned from your journey that you think other people navigating life with a child with mental illness would benefit from knowing?
Hold on Tight gifts readers with 13 key insights to inspire and empower them to help ease the journey. Here are five of these life lessons:
1 . Trust your gut as a parent. You know your child better than anyone else. If you think something is seriously wrong, it generally is. Of course it’s important to listen to health care and parenting experts, but if what they say doesn’t resonate with you, keep looking. David and I had to learn that most doctors are not trained and qualified to deal with complex mental health disorders. The constant rebuffs from our doctor perplexed me, made me despondent and took their toll on my usual confidence. It was only after a few years — although it seemed like an eternity at the time — that I came to understand that he was well-meaning but in no position to help us and hadn’t even recognized the need to refer the children earlier to appropriate specialists. Be tenacious: this doesn’t mean being overly aggressive, but when you are not comfortable with what one professional tells you, seek another opinion. Don’t settle for less.
2. Talk openly with your children. Good parenting is all about good communication. Children are naturally frightened when they don’t understand what is happening in their lives or why they are causing such pain and havoc, both at home and at school. It’s so important to sit down with them, listen carefully and let them know you understand their fears and that they are valued. David and I made sure the children knew they weren’t bad children and that what was happening in their lives wasn’t their faults. We separated them from their mental health challenges so that their identities weren’t only tied to them. And we importantly didn’t hide or avoid information, but educated and involved them so they gradually became empowered as they grew older and were able to become increasingly involved in their own treatment and advocacy. It’s wonderful to see.
3 . Insist on an integrated partnership approach with every professional involved in your child’s care. This overarching insight crosses all facets of your child’s life, right through adulthood. The best outcomes occur when all caregivers are on the same page, share information and listen to and respect each other’s perspectives. Andrew and Ainsley have benefited from this approach in spades. To this day, I make sure their psychiatrists and psychologists communicate with one another so they can adjust their approaches accordingly. Ainsley’s school held monthly group meetings with her principal, all her teachers, Ainsley’s external psychologist and us so that we could implement coordinated strategies to help her succeed, and Andrew’s school sent notes home about his day every afternoon that we returned the following morning. And today, a large part of Andrew’s success in his job is due to the partnership that Rogers has with us. They listen to us, have taken our recommendations to heart, such as bringing in a job coach, and have customized accommodations for him. To this day, if a professional has no interest in treating David and me as core team members, it’s time to move to someone else.
4 . Reset the expectations for your life. Mental health disorders throw every family member’s life into disarray. The key to being able to move forward is to accept that your life may not be as planned for or hoped for in many ways. David and I started our parenting journey the same as every other young parent, with hopes and dreams of happy, successful children. Yet our reality was so different. We were so frightened and drained. We had to stop having any social life for a number of years because we never knew if Andrew would have a meltdown or Ainsley would misbehave or become physically aggressive. We’ve learned to recalibrate our relationships with certain family members and friends in the face of fear, misunderstandings and stigma. We navigate and limit our engagement with family members who are critical and judgmental or who think they had all the answers. And when friends have distanced themselves, I have learned to shed them: I simply lack the emotional reserves and energy to deal with them. Instead, I turn to those who are truly supportive, particularly other parents of similar children.
5 . Be kind to your partner and to yourself. Children’s mental health disorders wreak havoc with marriages and partnerships. The stresses can be debilitating, and it’s easy to lash out at the person closest to you. I’ve heard parents blame one another, accuse one another, undermine each other and disagree about everything from diagnoses and discipline to medications and therapy. But true partnership means reaching informed decisions about your children together, trusting each other and providing each other with essential emotional support. Remember that your children have in-built antennae and know when their parents aren’t on the same page. Of course David and I have not been immune from these issues. We want to throttle each other from time to time…but we know we are each trying our best and we give each other the benefit of the doubt. And as hard as it is for me, I try to be kind to myself and forgive myself for my mistakes. Compliment yourself on your strength and resilience. You are more than enough: you are your child’s champion.
Stigma surrounding mental illness can often lead to misconceptions and isolation. How has your family confronted and worked to overcome the stigma associated with mental illness?
This has become my calling. We can only combat stigma if we shout out about mental health. We must educate the public with facts versus myths and demystify unwarranted fears and misunderstandings.
Every member of my family volunteers and advocates. I have sat on seven different Boards and Advisory Councils in both Canada and the US. Early on, when Andrew was in deep distress with his OCD, I created the first parent support group on OCD with his psychologist. I then joined the Board and became Vice Chair of Canada’s leading psychiatric hospital, the Centre for Addiction and Mental Health, as well as serving on the Parent Advisory Council at Massachusetts General Hospital’s Department of Neuropsychopharmacology. I am currently Chair of Kerry’s Place Autism Services, Canada’s largest autism services provider. I also write a monthly column for Today’s Parent, appear on podcasts and publish articles for a number of mental health and neurodiversity magazines and journals.
Perhaps most importantly, I released my best-selling book Hold on Tight: A Parent’s Journey Raising Children with Mental Illness in March. This is a book I wish I had as a young parent, and I am thrilled it has been honoured with the Mom’s Choice Award®. Since the book’s publication, I have been speaking across North America to inspire and empower anyone touched by mental illness and neurodiversity to persevere through the toughest of times, have hope and know they are not alone.
I am delighted to see more and more individuals with lived experience stepping up, organizing themselves and advocating. We still have a long way to go, but it is critical that our children’s rights receive the needed attention and that their voices are heard.
Despite the challenges, families often find moments of triumph and resilience. Can you share a particularly proud moment or a breakthrough that your family has experienced in this journey?
Despite the children’s challenges, we have enjoyed many moments of pride, happiness and awe. Andrew and Ainsley both know that their lives will be non-stop roller coaster rides, but I’d like to share a story about each of them that illustrates how they have persevered and triumphed. They are the reason I have become a hope ambassador.
Ainsley always had an extremely difficult time at school. As I mentioned earlier, not only was her behaviour disruptive and unruly, but her learning disabilities were severe and she became easily frustrated. Her executive function skills, which help with organization, time management and getting things done, were particularly impaired. She seemed doomed to academic failure. Yet she was determined to succeed. She decided to become a Child and Youth Counselor, worked with tutors and benefited from academic accommodations. Not only did she graduate from high school but she went on to university, where she received an A+ on her senior year thesis about growing up with an autistic sibling. She now works in the classroom with young autistic children, and I am convinced that her own lived experiences combined with her deep intrinsic knowledge of Andrew have been instrumental to her success.
And Andrew is an eternal optimist and charmer. Five years ago, he decided to change jobs. His employer at the time was well-meaning but had no interest in partnering with us and treated him like a child, giving him boring, meaningless work. He had always wanted to work for Rogers and his lack of filter served him well, as he simply reached out to the company’s CEO and asked for a job. To my surprise and delight, he was hired two months later. And Rogers has understood the critical importance of partnering with us from the beginning to help Andrew succeed. He is a valued, hard-working employee who wants to work there until he’s 70 and be their best employee, not their best disabled employee.
Are there any books, podcasts, or other resources that have helped you understand or manage your condition better?
There are so many resources, and it’s important to stay current, as there are always new findings, medications, therapeutic approaches and treatments. From the start, I have always read anything and everything I can get my hands on. These have ranged from classic books, such as Judith Rapoport’s The Boy Who Couldn’t Stop Washing and Edward Hallowell’s Driven to Distraction, to newer books, such as Devon Price’s Unmasking Autism and Judson Brewer’s Unwinding Anxiety. I have watched videos like The Touching Tree about OCD. And I have attended conferences put on by organizations such as the Tourette Association of America and the International OCD Foundation, to name a few. I also regularly read scientific and research articles.
For my Today’s Parent column, I am fortunate to interview many of North America’s leading experts in the mental health and neurodiversity fields. I am grateful that my knowledge is continually expanding.
We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them. 🙂
I would love to sit down with Glenn Close. Not only do I think she’s a brilliant actor, but she — like me — has family members with mental illnesses and has become a leading mental health advocate. In 2010, along with her sister and nephew, she co-founded the non-profit foundation Bring Change To Mind to fight stigma and discrimination, end the silence and normalize the conversation around mental illness, and empower people to share their stories. She inspires me.
How can our readers further follow your work online?
My website is janstewartauthor.com, and I would enjoy hearing from your readers. And I post every day on social media, particularly on Instagram, at janstewartauthor. Please follow me!
Thank you for your time and thoughtful answers. I know many people will gain so much from hearing this.
About The Interviewer: Stephanie Greer, PhD is the Co-founder and CEO of Akin Mental Health — a company dedicated to guiding families on their journey supporting a loved one with mental health challenges like bipolar disorder, schizophrenia and severe depression. Stephanie is passionate about this topic from her own personal experience growing up with a mother who struggled with bipolar 1 disorder and found a path forward to overcome the obstacles and live well. Stephanie’s professional experience includes a doctorate in neuroscience as well as design research roles at Hopelab and Apple. Stephanie brings this personal passion together with her world-class science and technology background to support families across the US in their personal journeys supporting loved ones with mental illness. To learn more about Akin Mental Health and join our community, visit us at akinmh.com.
Jan Stewart: How Our Family Navigates Life With A Child With A Mental Illness was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.