August 22, 2024 • 38 mins
In this heartfelt episode, I interview Jan Stewart, a mental health advocate, and author of Hold on Tight: A Parent's Journey Raising Children with Mental Illness. Jan shares her deeply personal journey of raising two neurodivergent children, Andrew and Ainsley, and the challenges her family has faced. From early signs of their children’s struggles to navigating a complex healthcare system, Jan's story is one of resilience, love, and relentless advocacy.
Despite the immense challenges, Jan finds strength in her family, community, and mission to help others facing similar situations. This episode is a powerful testament to the strength of parents who dedicate their lives to supporting their children through adversity.
To buy Jan Stewart's book: https://www.amazon.ca/Hold-Tight-Parents-Journey-Children/dp/1988025974
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Episode Transcript
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(00:03):
The people that listen to the show, you know that I'm a proud father of
2 beautiful daughters. And their beauty radiates from the
inside out. They're loving, they're caring, they're creative. They live too
far away. I mean, one's in San Francisco and they're marketing from one of the
leading technology brands in the world. Bless me with a grandson
and one on the way. And the youngest lives in England. She works in the
(00:25):
well-being and inclusion space for one of the UK's leading financial services
groups. I mean, listen, being a parent is never easy, but
compared to many, mine was a skip in the park. I got to
celebrate their journey unless something happened that was
outside of their control that they really had a sense of the path they wanted
to follow. They have empathy, they have intelligence, they have capacity, and
(00:47):
capability. But they're both mentally and physically
healthy, and life is very different for parents with children who need
care, not just during their early informative years, but even for their
entire life. My guest today is a parent. Her name is Jan
Stewart. She's also highly regarded as a mental health
neurodiversity governance expert and advocate. We'll hear a
(01:08):
story, how she grew up in New York, moved to Toronto after marrying a Canadian.
Her life was was a skip in the park, untouched by major adversity,
and she imagined that's the path she'd follow as a parent. We all, of
course, had challenges growing up, but I was a straight a
student. I had summers in France. I went to
camps. I mean, it was an idyllic, childhood and
(01:31):
teenagehood in many years. But she wrote this raw and emotional
book, Hold on Tight, A Parent's Journey Raising Children with
Mental Illness. He would start crying instead of screaming
in so much in pain and so distressed, he would say, mom,
I don't know what's happening. It's not me. And
you would just die. And on the covers, there's this really
(01:55):
interesting graphic, and I love pictures, and it's a roller
coaster. And she candidly describes the shock she and her husband face when
each of their 2 young children start exhibiting troubling behavior.
This is Chatter That Matters with Tony Chapman
(02:15):
presented by RBC.
Jan Stewart, welcome to Chatter That Matters. Thank you,
Tony. It's wonderful to be here. And, Jan, before we begin
and talk about your journey, I know that you wanted to be very upfront in
sort of declaring who you are and what your status is. So why don't we
start there? I know how
fortunate I am
(02:40):
independent of my kids. I'm white, heterosexual. I'm a
woman of privilege, and I've been able to afford with our
family the sometimes very steep costs that come
with raising neurodivergent children. But what I
want to really stress is that what we're gonna talk about today
and the life lessons and the insights are universal. They
(03:02):
apply whether you're married or single, whether you're struggling
financially or not, and they cross all races, religions,
cultures, ethnicities, gender orientation, sexual identity,
the list goes on. You know, you talk about white and growing up with privilege,
but we also you also grew up in New York, and your early
ambitions were to become a dancer. Now a lot of children
(03:24):
wanna pursue theater and the arts, but yours was to dance in the footsteps of
your mom, who's a model and Broadway actor. Tell me a little bit about the
early Jan and why ballerina slippers
or tap dance shoes were were really what you thought were gonna be the fashion
of choice for you? I had rose colored glasses on as I did when I
got married later that we'll talk about, but my life was fairly
(03:46):
idyllic. And as you said, I didn't ever really face true
adversity. My parents instilled some very
hardcore values of hard work, curiosity,
ambition. I think my mother in particular,
Toni, made sure that I knew it was important to grow
up and be able to take care of myself and be self sufficient so I
(04:08):
would never have to depend on anyone else in a in a bad situation.
So those values drove me, But I think my mother did
influence me a lot because she had been on a show on Broadway called kiss
and tell. She was a well known model, and, I wanted to
follow a lot in those footsteps. And so I went to summer camp at
National Music Camp in Michigan, which a lot
(04:31):
of people know is a wonderful place. In New York City,
I attended the American Academy of Dramatic Arts on Saturdays,
and this continued. And when I got to university, and I went
to Northwestern University, which is right outside Chicago. It's a
beautiful university, but I changed tact.
I knew that I was assertive, but not aggressive.
(04:54):
And I didn't have that killer instinct, frankly, to
go into the performing arts. I love dancing, but
I also knew I was very, very good, but not great. So what do you
choose to do next? Because when you're dreaming of the stage,
that's a fairly narrow lane to dream about. How did you open your
mind to other possibilities? And when you did, what did you choose to
(05:17):
do? Well, first, I think I opened my mind, Tony, to money to
help others. That had been a core part of the values that
my parents had instilled in me. And throughout my
youth and adolescence, I had always volunteered with different groups.
So as I thought about it, I became enamored a little bit of Helen
Keller and Anne Bancroft. It it still has a performance aspect to
(05:39):
it. And so I learned American sign language ASL and
then started working with, the deaf
community as well as with the broader physically disabled lobby in
Washington DC for several years. I can. This is an interesting part that
I find because the performing arts, for sure, there's an ensemble,
and then you're going into speech pathology, which is 1 on 1, but
(06:02):
very soon that you're into it, you start becoming this advocate.
What do you think brought you into this journey in life
where you felt that you're not on your on your shoulders? You're not just gonna
help 1, but you could potentially help many. I think I'm probably just wired that
way as my entire family was growing up, and I have several
friends who have children who are disabled, both physically and mentally.
(06:24):
And I think we've all found the same thing.
When your child is in pain, in distress, when you
see what's going on, when you're so frightened that you don't
know if you'll ever climb out and see the light, You stay
motivated. You keep going. And then when you're out of
crisis, because it's an endless roller coaster, as you said with the book,
(06:46):
you learn that, at least for me, it's
so beneficial and personally uplifting to help the
broader community in whatever community it is. So, again, there's
another move on the chessboard, and you get your MBA.
Put that as as sort of we're building this knapsack that's gonna
ultimately serve not only the business world, but you
(07:08):
as a parent to your vantage, but why an MBA? Well, I think it was
for two reasons. 1, in working
with the physically disabled and deaf communities, I came
to the realization that I'd be a far more effective advocate
if I was disabled myself. And those are the voices that
I always follow in every community, whether it's physically disabled,
(07:30):
autism, Tourette syndrome, whatever. But secondly, I think my initial
thought was to get my MBA and you round out
my skills, get those business skills, and then apply it to
nonprofit organizations. But while I was getting my
MBA, I fell in love with finance. And
and so I made a huge pivot into corporate and investment banking
(07:53):
at JPMorgan. And this is, again, it's so interesting. It's it's
almost like your kaleidoscope. And every time you turn the handle, I
see a completely interesting individual emerge because
you do very well in finance. I mean, so almost everything you've
touched, you've been successful at. Were there any transferable
skills? Because one of the things I'm trying to do is as I talk to
(08:14):
youth is to realize that every situation you're in
is an opportunity to learn, to grow, to bank
skills. Looking at your life, the MBA, speech
pathology, advocacy, performing arts, the values
instilled, into your sister and your family, your parents, Is there a way to
say at this stage in my life, I really feel I have
(08:37):
these superpowers? I think in every job, particularly, you know, I was still in
my twenties at the time. You learn new skills and you learn
everything. But what threaded it all together was I have
and I know I'm, again, fortunate I have a strength in terms of
my team skills, communication
skills, connection with others. And that really has tied
(09:00):
it all together, which, by the way, led to yet one
more career change and the most important one.
So after 10 years in corporate and investment banking,
and in the middle of that, by the way, I met and then a year
later married my husband, David, who, as you mentioned, is up here in
Canada. So I moved from New York to Canada, a
(09:22):
huge change on top of everything else, spent
another 5 years in banking, and then pivoted
to executive and board search with the global executive
search from Egon Zehnder, where I spent 25 years and really
thrived. As you look at, like, 25 years you spent
there, and if I said the rewards were intellectual,
(09:44):
I I was stimulated, emotionally, I
was grounded, hands, I got to put some people in
some very important positions or financial rewards, what mattered the most to
you during the time you were building your career and now as you reflect on
it? I've always loved everything I've done from a career point of view, or I
wouldn't have done it. I would have made a change. But at Aegon Sender,
(10:06):
I had a chance to place some of the
most important exciting CEOs, c
suite executives, and board members, and really make a
difference in the lives of Canadians, and many of these searchers
were international. But on the other hand, I also got it was
a win win for the candidates because they their
(10:28):
careers were bolstered, and it was great to see the difference that
they could make in the companies and organizations that they
joined. I I was so fortunate. I used to always say it was like going
to a cocktail party every day. It was huge work. It was long hours and
high pressure.
(10:52):
So now we're gonna move the story to the the heart of the matter.
You meet David. He's a Canadian. I'm glad he's a Canadian because we get to
bring you here versus, you know, the brain drain that I'm always worried
about. And I imagine you get married and you think that this
life is, you know, I'm going to instill the same values and work ethic in
my kids that my parents did in me. And you have 2 children, Andrew
(11:14):
and Ainsley. Today, they're grown adults. But take us back to the
time when you and your husband started sensing that something wasn't right. Who was your
oldest child? Andrew's the eldest. Okay. So talk to me first about what
you experienced with Andrew. From almost the time he was born,
Tony, David and I felt that something wasn't
right. His hands and feet in constant
(11:36):
circular motions. And unlike all of
our friends' babies that I knew, he never gurgled or talked to
himself or played in his crib. You know, we had intercoms in the room, and
we kept listening. Nothing. But the minute he woke up, he would
start crying and say, come get me, feed me.
And he had no self control when it came to feeding. It was pretty scary.
(11:59):
He would have downed as many bottles as we gave him without
stopping and without getting sick, which was surprising,
if we didn't control that intake. He also was
very, very difficult to soothe in those early days.
And we read every book we could, talked to
anyone we could about normal developmental behavior, but
(12:20):
we never could read about or hear about what we were seeing
and observing. You go to the doctor with this, and instead of the
doctor having empathy, they basically
label you an over concerned AAA mother from New York. I mean,
how did that make you feel? Because your intuition's wired, your
observation's wired, you're clearly that's who you've been since day 1,
(12:43):
wired in terms of how other people are feeling. It must have been just, I
don't know, confusing, chaotic, conflicting, maybe. How did you deal
with doctors that just said, you might be the problem? Well, it shook me. I
think it would shake anyone, but I was a first time parent.
I didn't know any better, and I had been brought up to trust our doctor.
He was the medical expert. He knew everything. I
(13:04):
remember one afternoon leaving his office and feeling
totally helpless, even questioning whether I really was
indeed the problem because every time he would discount
what I said, it would perplex me. It would make me despondent,
and it did take some toll on my confidence, which is
usually very, very strong. Of course, as I've since
(13:26):
learned, this discounting of caregiver concerns
is far too common. And I do empathize, by the way, with
doctors. They see a number of parents who excessively worry,
but there's a balance. Talk to me about Ainsley now. How how many
years after Andrew did Ainsley come along? Ainsley
is 22 months younger than Andrew. And what about Ainsley?
(13:48):
How did she sort of react in terms of what
you thought might be normal compared to what you were dealing with with
Andrew? Let me back up just one second if you permit me.
Sure. Of course. Because that affects her a great deal. Over
the next several years, David and I had increasing concerns about
Andrew. There was impulsivity, distractibility. There were
(14:10):
vocal and motor tics, anxiety, learning disabilities.
Yet all his teachers said, oh, he's keen and
enthusiastic. He learned to read and write with his peers.
He was eager to please, but he was also
very active, very chatty. He needed a lot of
reminders to focus and follow instructions. And
(14:33):
just like that doctor, who, by the way, kept discounting my
concerns and telling me, stop worrying. He's just a sensitive child.
He'll grow out of this. Again, very common. None of his
teachers thought he needed help. But by grade 3,
we had really heightened concerns about him. There
was inability to understand
(14:55):
abstract concepts. He couldn't maintain eye contact, and
he had terrible difficulty with change and transitions between
activities. I remember a group of neighborhood kids
playing, I think it was hide and seek one afternoon, and then making the
change to capture the flag. And Andrew just couldn't handle
the sudden change, and he just had a meltdown. And there
(15:17):
were some other issues too. But then Ainsley came along
22 months later and she was far easier as a
baby and a toddler. And she was very different. She was fun and
mischievous. And unlike Andrew, who was very rule bound,
she was a risk taker. She loved adrenaline
generating activities and she'd fly off stairs, climb on furniture,
(15:41):
but she also had some of the same similarities. She
couldn't sustain attention, but of course, we didn't realize that this
wasn't the norm. These were both our kids. And overall,
we were delighted with this captivating little girl who we thought probably
had none of the challenges Andrew did. What happens
in a relationship when you realize that
(16:04):
the path that we thought we were going to travel together as
a couple and as parents is going to veer very
differently now because your children are going
to require a very different set of needs
than you might have expected? It's very difficult. Let's be honest.
There's no marriage or partnership. Whether you have children with challenges or
(16:26):
not, that is perfect. But for parents and caregivers
like David and me, the stresses and strains can be
absolutely debilitating. You know, I've heard parents
disagree about everything from discipline to diagnoses,
therapy to medications. I think medications in particular
cause huge schisms. You know, one parent doesn't believe
(16:48):
in meds, doesn't believe their child needs it. And what
we have to remember is that these issues not only
divide partners, but the children know they have that inbuilt
antenna. And David and I have not been immune from
this. There's no question about it. We
have wanted to throttle each other from time to time,
(17:11):
and, you know, he rightfully sees me as overly decisive,
rigid, direct. And I see him as
not firm enough, too accommodating, slower to
make decisions. Of course, I have a pretty unrelenting pace.
But at the core, we trust each other. We lean on
one another, and we know that we're trying our best even if
(17:34):
it's not what we would ideally wanna do. So what advice can you give to
other parents? I mean, trust was a key component that I just heard because I've
heard some statistics about how situations like
this or losing a child early,
often end to marital breakup. That this is, you know, that because
you're not marching in step, because there's just too wide of a gap
(17:57):
in terms of what you might want and what David
might want. A lot of children are struggling with their mental well-being
and aren't embracing or haven't got the same appetite for
life that we might used to have because they're just living in all this negative
headwinds. That give each other the benefit of the doubt is the
core of what I say. And if you're going to
(18:19):
disagree about something, you need to talk about it. I think that's natural
and you've got to talk about it, but away from the kids.
And you what you really wanna do is act together as
harmoniously as you can in the children's best interest.
Even try to find some humor. You know, David and I joke about the
genesis of the kids' disorders. He has a restless leg, and so
(18:42):
I point at him and go, ADHD. And he points
right back at me with my perfectionist tendencies and says, back
OCD. So you really do wanna lean on each
other. It's open, transparent communication
just as it is with your children. So now you're donning a new
cape, still being an advocate, but you've now gotta become
(19:04):
warrior mom. You've gotta now navigate the
healthcare system. You've also got to have conversations with your
children. I have to imagine at times they've been bullied, laughed at
by other kids because they might be different. They can't change from one game to
another. So talk about when you decided
that this isn't just gonna be about my children, but I
(19:26):
also wanted to make it about helping other parents
dealing with similar situations. When Andrew
reached 9 years old, we were at my husband's
family's cottage in the Laurentians, north of Montreal,
and the kids were having a great time with their cousins, aunts, and uncles, and
playing. But on the 4th morning, out of
(19:48):
nowhere, Andrew ran out of the living room,
streamed upstairs, and started screaming for hours.
He was ranting and raving and kicking and even punching
holes in walls. And he didn't know what was happening, but this
happened almost every day for up to 2
hours. And within 1 month, he
(20:10):
started engaging in nonstop compulsive rituals, touching
walls repeatedly for hours, couldn't walk through doors for 20 or
30 minutes, and they escalated. He
placed his head against shrubs and car tires, put
knives in his mouth to feel them, and even got down on the
filthy floor and gnawed it repeatedly. You can imagine how I
(20:32):
felt. And when he said to me one day,
mom, I think I'm going crazy and I wanna die, you can
imagine how I felt. Now park that for a
minute. Ainsley, great, as I said, as a baby and
toddler, and then she got to school, and all hell broke loose.
She was disruptive, unruly, morose,
(20:55):
jumped on desks rude, constantly sent to the principal's
office. Those daily calls almost every day just killed me.
And she also had paralyzing anxiety and
couldn't read her friends' social cues so that she
gradually lost all her friends. And after she was
sent to the principal's office for the umpteenth time, she wrote me a
(21:17):
note that said, mom, I know I'm a bad
child, but I can't help my behavior. These are
shocking things for any parent or caregiver,
but I was determined to find them the right help,
and I promised them I would. And after I
said, we've gotta help others too, there was just
(21:40):
there there was nothing written from a parental perspective at the
time and no one really to help us. We had to be
out there and find our own path. You know, reading those notes, I mean, I
I have tears in my eyes in each one of the ones you described, and
I can't imagine as a parent getting those like that. But did that
suddenly fire you up in the sense that you knew that inside
(22:01):
each of those children, they knew what was going on and they wanted to
get better, they wanted help? Without a doubt, Tony,
not only my kids, but every child I know going through these
complex challenges are naturally frightened. They don't
understand what's going on and why there's such pain and havoc
around them. And even if they don't say it, and, by the way, this includes
(22:23):
teenagers, they want help. So
it's important to give them the help, but then to
go broader if you have the energy and time.
I am so empathetic with parents and caregivers who are
wrung out. I've been there, and you don't have to do it. Let
others do it who can, but hopefully benefit from it.
(22:46):
But you've got to sit down with your kids. It was so important
for us to explain to them that they weren't bad
children, that it wasn't their fault, that and to
separate them from their issues so that their identities weren't only
about what was going on in their mental health
and neurodevelopmental behavior. It was just critical and
(23:08):
not to hide or avoid information. All that is so
critical, but when you see your child in such pain and
in such distress and when you're so frightened with
what's going on, how can you not help them? I think there's an interesting
part of your book, Hold on Tight, A Parent's Journey to Raising Children with Mental
Illness, where you also talk about the isolation that
(23:30):
the parents can feel raising kids with
exceptional needs. Because it must be hard to be the parent who
has the child pounding the wall or jumping on desks or always in the
parents' or always in the principal's office. How
do you advise parents to deal with isolation
and to also reach out and find support so
(23:52):
that they have the strength to keep moving forward to not
only help their children, but also to help themselves? I
would say well over 50% of the calls and emails I
get from struggling parents deal with isolation that
what they're facing. So first, there are 2 different buckets.
There's family and there's friends. So with
(24:14):
family, you're stuck with your family members, and many of
them can be great, but many of them can be critical,
judgmental, or many offer solutions that they think
they know about and they really don't understand. So you do have to
learn how to limit your engagement with those folks, navigate around
them. I have strategies that I use, like I smile a lot. I
(24:36):
try to change the topic. Sometimes I go in another room, and I
silently scream. And, by the way, these strategies
have worked not only for me, but Andrew and Ainsley, as they've grown up,
are now using the same strategies. I modeled it for them without
realizing I had, and it's great to see. So you that's the
family side, and neither David nor I has any
(24:59):
family in Toronto. So, by the way, we had to depend on ourselves
largely. But with friends, it's much clearer
to me. I'm much more black and white. A number
of friends undoubtedly distanced themselves. I've had it happen.
It's extremely upsetting. I write in Hold Untied
about a friend whose daughter, when they my kids were very
(25:22):
little, had become seriously ill and had to spend several months
in hospital. And David and I volunteered to take her other 2
kids every weekend, treated them as part of our family. We
did their grocery shopping, a lot of other things. Well, fast forward
2 years to my kids, and I'm in crisis. I reach out to her,
and she's very empathetic on the phone, and I never heard from her again.
(25:44):
I don't think that's atypical. There's a lot of fear,
misunderstandings, and stigma that come from a lack of awareness and a lack
of education, and it's compounded for many of us
parents like me because we're so consumed with our children's
care that we have no time to invest in our own
friendships, but there's a silver lining. And that
(26:07):
silver lining for me has been other parents
of similar kids. It's a wonderful community,
so reaffirming, and to this day, propel me
forward. It's a community that for all of us
exist, whether virtually or, most importantly,
in your own community, physically. When
(26:31):
we come back, I wrap up my interview with Jan Stewart, my 3
takeaways, and then I talk a little bit about these extraordinary
parents, like Jan and Dave Stewart, that truly
matter.
Hi. This is Tony Chapman, host of the radio show and podcast, Chatter That
(26:52):
Matters. Did you know that only 1 in 5 youth with a mental
health illness can get access to the care they need? Well,
a big shout out to the RBC Foundation and RBC Future Launch
for supporting over 150 youth mental health organizations.
And in doing so, they help youth and their families get the care they need
and deserve.
(27:17):
But you must reset the expectations for your lives. This is another key
insight in the book. Many family and friends who want to do
the right thing but are scared, don't know
how. There's still, unfortunately, a lot of stigma.
Discrimination, it comes from a lack of awareness, lack of education,
misunderstandings. You're listening to Chatter That Matters with Tony
(27:39):
Chapman presented by RBC. Joining me today is Jan
Stewart, extraordinary parent and an advocate
for all parents who need the kind of help their
children deserve.
Early on in the interview, you made a a life decision to
move away from performing arts, to get involved in
(28:01):
what would turn out to be a lifetime of helping others, and you framed it,
I did so because I was assertive, not aggressive. Has that
lesson ever come back and served you well in other times
in your life? That early lesson of being assertive
versus aggressive has served me extremely well as an
advocate for my kids and for the broader community because
(28:24):
you have to put yourself in the other person's shoes
and realize that they're trying their best too in different ways.
They may be having a bad day. They may be having a good day, whatever.
But once you can be empathetic and do that, it really serves
you well, and you go a lot further. Talk to me about Andrew and Ainsley,
how they are today and what you and David
(28:47):
have done over this time to
hopefully that they'll never write a note like that again. I hope they won't. That
that would be absolutely terrible, but, both
my kids are really, really amazing. I I say that
they're my hero and the the heroes, and they really
are. So in Andrew's case, he grapples
(29:08):
still with impulsivity, anxiety, and his
obsessive compulsive disorder. He reformats his computer
repeatedly. He picks his lips and his
scabs till they bleed, and that's always a concern. He
asked for reassurance constantly and over apologizes.
But he has a wonderful full time job at
(29:31):
one of Canada's leading telecommunications companies, Rogers Communications.
He's been there over five and a half years, and they've been
true partners with us in terms of creating an environment of belonging.
He spent 10 years living in a lovely group
residence, but after 10 years, he thought and we thought he could handle
(29:53):
supportive semi independent living. And so I
found just a 5 minute walk from our house, a sunny one
bedroom, and he's been there for the past 5 or 6 years. David and I
take turns going down every morning to wake him up, prepare his
meals, make sure he takes his medications,
is tidying up, and off he goes to work. And he
(30:15):
has immense charm. I was just thinking the other day. He
went down to one of the first Toronto Blue Jays games of the
season. He's a huge Blue Jays fan. And we were on the
subway together at the TTC, and he
spotted across the aisle a young man with a Toronto Blue Jays
cap on. So we started engaging with him. And the next
(30:37):
thing I knew, all 5, 10 people all around us on the
subway are are all chanting, go, jays. Go. Go,
Jays. Go. He just has that effect on people. It it's absolutely
amazing what he does. And Ainsley Ainsley
has severe, severe executive function deficits that come
with her ADHD along with still overwhelming
(30:59):
anxiety. Now for those people that don't know what executive
function is, think of it, and I posted this today on
Instagram, as the symphony conductor in the brain.
It helps you organize time management, get things
done, and it also helps you avoid saying and doing the wrong
thing. Ainsley has a lot of trouble getting things
(31:21):
done, and it upsets me when she forgets to pick up her medications
or make an important appointment. But,
also, she has these severe learning disabilities,
extreme, and yet she was always determined to graduate from
university. And with a lot of support, she did. It was
absolutely breathtaking, and she's become the most gifted child
(31:44):
and youth counselor today working in the school system with
young neurodivergent children. And I'm convinced, Toni, it's her
own lived experiences as well as her deep intrinsic knowledge of her
brother that have made her so gifted. They are
amazing. Speaking of success and gifted, you write this book,
Hold Untight, A Parent's Journey to Raising Children's Mental Illness, honored
(32:06):
with a mom's choice award, wrote to be Amazon's top seller in the autism
genre last spring. Why did you write it, and
what are you most proud of? Because I asked you earlier, what was you most
proud about in your career? I'm gonna ask you the same question in terms of
publishing this book. In reflection, time well spent, and are
you happy with how it all turned out? I'm ecstatic with how it all turned
(32:27):
out, and you're gonna hear the same theme about my pride in
helping others. But I originally wrote the book as a
catharsis for myself a number of years ago. I started writing it,
But as I was doing so, it ruminated in my
brain and my mind, help others, because that's a core
part of who I am. And I also wanted
(32:51):
to educate the other constituencies, you know, family members,
friends, educators, health care providers, employers,
who don't often understand the
sometimes very complex and overwhelming overwhelming issues that
we parents face. As I look back, I
know David and I would have benefited so much from
(33:13):
being able to read about what other families experience, what
worked, what didn't, and learn from that.
So I did my research as I started shifting
and decided to be brutally honest. I do tell the
toll that these disorders bring on families' lives in detail,
but I also celebrate success, many successes,
(33:36):
and I give readers with the insights. But during the
research, I was surprised to learn that relatively little has been written from the
parental perspective, and I'm proud to fill the void. I think
that's so important. This is a book I wish I had as a young parent,
and that's probably what I'm proudest of. I always end my shows with
my three takeaways. And one that came
(33:58):
out that is really universal lesson is I
was assertive, nonaggressive. This observation
on who you are and what matters most to you is one,
I think, one of the most important lessons that anyone can
follow to help you identify the past in life that you wanna go
on and the fact that you knew this about you, yourself versus
(34:20):
denying or embracing. The second thing is this concept of
strength in numbers, that parents do feel such great
isolation, but if you find yourself in a community
of other people on similar journeys, and
each one of those people in that community are there to help each
other versus lecture or rule eyes
(34:42):
or dismiss or abandon, which has happened to you and with
people that don't have children with these challenges, I think it's so
important that anywhere you are in life is to find like
minded people that you can build trust with that
have your back and they have their back. And then the last thing that is
just this advocacy that you take it
(35:04):
upon yourself to say, when I read those
two notes, I knew I had to do more.
I knew I had to do whatever it takes. That alone
is exhausting, but the fact that you chose to have that not
only as your mission but a mission for others, to me, it's just
really what I find so wonderful and extraordinary about you.
(35:26):
I think Andrew and Ainsley were very fortunate that they
had you and David as parents, and I think the world
is very fortunate that you've taken it upon yourself to say,
as I blaze my trail, I wanna make sure I mark it so that
other people might be able to find even a little
bit easier path than I've gone through. And I think that's just a life well
(35:49):
spent, so I appreciate you joining my chat of the matters. I have to tell
you, I have to compliment you, Tony. I've never I've done tons
of podcasts. I've never had someone do as much research as you, and
it really shows in the questions you ask and in, you
know, and how you approach things. Thank you, Tony.
On my journey through life, I've had the privilege of meeting parents like Jan Stewart
(36:10):
and her husband David. Breck and Rachel have become dear friends of ours
in Costa Rica. Parents have once envisioned a life filled with
milestones and celebrations, the everyday joys of watching their
children thrive. But those dreams took an unexpected
turn. Could be because of their child's mental or physical
health, maybe later in life, their struggles with addiction,
(36:33):
a life altering accident, or the unimaginable pain of
loss. These parents face challenges that could easily have
unraveled their lives and their love for each other,
but it didn't, did it? And late nights then became a
familiar companion, not just from the exhaustion of parenting, but
from the worry that comes with navigating uncharted territories, finding
(36:54):
yourselves making tough decisions, prioritizing spending, not
on luxuries, but on therapies and treatments, and the tools their
children needed to simply get through the day. And the focus shifted
to what truly matters, love resilience, and the hope that
tomorrow could bring even the smallest of improvements. And in the smallest of
wins, they found a joy that few can understand. A child that
(37:17):
finally sleeps through the night, a word spoken after years, a a day
without pain. These moments, though small to others, are monumental
to these parents. They're like winning the lottery, not in dollars,
but in the currency of hope and progress.
Parents who have these children, your lives change and
often permanently, and dreams now have to factor in both
(37:39):
possibility and impossibility. But the ones I have the
highest respect for, it didn't matter. You accepted your
calling, profound commitment to stand for and stand by each
other and your family. And through every challenge, you became
advocates, fighters, offering the unwavering support your children needed
and in turn, what other parents in similar circumstances
(38:02):
needed. We managed to find strength and resilience, this
renewed sense of purpose, proving that even when life takes unexpected
turns, love and dedication can light the path forward.
As we close today's episode, I wanna give a standing ovation to Jan,
David, and all the parents out there whose life has changed,
not necessarily for their better, but for the better of others.
(38:26):
You are the pillars that hold up the world for your children. And for that,
you deserve our deepest respect and admiration. Thank you for being
part of the human race. Chatter that matters has been a presentation
of RBC. It's Tony Chapman. Thanks for listening, and
let's chat soon.
The people that listen to the show, you know that I'm a proud father of
2 beautiful daughters. And their beauty radiates from the
inside out. They're loving, they're caring, they're creative. They live too
far away. I mean, one's in San Francisco and they're marketing from one of the
leading technology brands in the world. Bless me with a grandson
and one on the way. And the youngest lives in England. She works in the
(00:25):
well-being and inclusion space for one of the UK's leading financial services
groups. I mean, listen, being a parent is never easy, but
compared to many, mine was a skip in the park. I got to
celebrate their journey unless something happened that was
outside of their control that they really had a sense of the path they wanted
to follow. They have empathy, they have intelligence, they have capacity, and
(00:47):
capability. But they're both mentally and physically
healthy, and life is very different for parents with children who need
care, not just during their early informative years, but even for their
entire life. My guest today is a parent. Her name is Jan
Stewart. She's also highly regarded as a mental health
neurodiversity governance expert and advocate. We'll hear a
(01:08):
story, how she grew up in New York, moved to Toronto after marrying a Canadian.
Her life was was a skip in the park, untouched by major adversity,
and she imagined that's the path she'd follow as a parent. We all, of
course, had challenges growing up, but I was a straight a
student. I had summers in France. I went to
camps. I mean, it was an idyllic, childhood and
(01:31):
teenagehood in many years. But she wrote this raw and emotional
book, Hold on Tight, A Parent's Journey Raising Children with
Mental Illness. He would start crying instead of screaming
in so much in pain and so distressed, he would say, mom,
I don't know what's happening. It's not me. And
you would just die. And on the covers, there's this really
(01:55):
interesting graphic, and I love pictures, and it's a roller
coaster. And she candidly describes the shock she and her husband face when
each of their 2 young children start exhibiting troubling behavior.
This is Chatter That Matters with Tony Chapman
(02:15):
presented by RBC.
Jan Stewart, welcome to Chatter That Matters. Thank you,
Tony. It's wonderful to be here. And, Jan, before we begin
and talk about your journey, I know that you wanted to be very upfront in
sort of declaring who you are and what your status is. So why don't we
start there? I know how
fortunate I am
(02:40):
independent of my kids. I'm white, heterosexual. I'm a
woman of privilege, and I've been able to afford with our
family the sometimes very steep costs that come
with raising neurodivergent children. But what I
want to really stress is that what we're gonna talk about today
and the life lessons and the insights are universal. They
(03:02):
apply whether you're married or single, whether you're struggling
financially or not, and they cross all races, religions,
cultures, ethnicities, gender orientation, sexual identity,
the list goes on. You know, you talk about white and growing up with privilege,
but we also you also grew up in New York, and your early
ambitions were to become a dancer. Now a lot of children
(03:24):
wanna pursue theater and the arts, but yours was to dance in the footsteps of
your mom, who's a model and Broadway actor. Tell me a little bit about the
early Jan and why ballerina slippers
or tap dance shoes were were really what you thought were gonna be the fashion
of choice for you? I had rose colored glasses on as I did when I
got married later that we'll talk about, but my life was fairly
(03:46):
idyllic. And as you said, I didn't ever really face true
adversity. My parents instilled some very
hardcore values of hard work, curiosity,
ambition. I think my mother in particular,
Toni, made sure that I knew it was important to grow
up and be able to take care of myself and be self sufficient so I
(04:08):
would never have to depend on anyone else in a in a bad situation.
So those values drove me, But I think my mother did
influence me a lot because she had been on a show on Broadway called kiss
and tell. She was a well known model, and, I wanted to
follow a lot in those footsteps. And so I went to summer camp at
National Music Camp in Michigan, which a lot
(04:31):
of people know is a wonderful place. In New York City,
I attended the American Academy of Dramatic Arts on Saturdays,
and this continued. And when I got to university, and I went
to Northwestern University, which is right outside Chicago. It's a
beautiful university, but I changed tact.
I knew that I was assertive, but not aggressive.
(04:54):
And I didn't have that killer instinct, frankly, to
go into the performing arts. I love dancing, but
I also knew I was very, very good, but not great. So what do you
choose to do next? Because when you're dreaming of the stage,
that's a fairly narrow lane to dream about. How did you open your
mind to other possibilities? And when you did, what did you choose to
(05:17):
do? Well, first, I think I opened my mind, Tony, to money to
help others. That had been a core part of the values that
my parents had instilled in me. And throughout my
youth and adolescence, I had always volunteered with different groups.
So as I thought about it, I became enamored a little bit of Helen
Keller and Anne Bancroft. It it still has a performance aspect to
(05:39):
it. And so I learned American sign language ASL and
then started working with, the deaf
community as well as with the broader physically disabled lobby in
Washington DC for several years. I can. This is an interesting part that
I find because the performing arts, for sure, there's an ensemble,
and then you're going into speech pathology, which is 1 on 1, but
(06:02):
very soon that you're into it, you start becoming this advocate.
What do you think brought you into this journey in life
where you felt that you're not on your on your shoulders? You're not just gonna
help 1, but you could potentially help many. I think I'm probably just wired that
way as my entire family was growing up, and I have several
friends who have children who are disabled, both physically and mentally.
(06:24):
And I think we've all found the same thing.
When your child is in pain, in distress, when you
see what's going on, when you're so frightened that you don't
know if you'll ever climb out and see the light, You stay
motivated. You keep going. And then when you're out of
crisis, because it's an endless roller coaster, as you said with the book,
(06:46):
you learn that, at least for me, it's
so beneficial and personally uplifting to help the
broader community in whatever community it is. So, again, there's
another move on the chessboard, and you get your MBA.
Put that as as sort of we're building this knapsack that's gonna
ultimately serve not only the business world, but you
(07:08):
as a parent to your vantage, but why an MBA? Well, I think it was
for two reasons. 1, in working
with the physically disabled and deaf communities, I came
to the realization that I'd be a far more effective advocate
if I was disabled myself. And those are the voices that
I always follow in every community, whether it's physically disabled,
(07:30):
autism, Tourette syndrome, whatever. But secondly, I think my initial
thought was to get my MBA and you round out
my skills, get those business skills, and then apply it to
nonprofit organizations. But while I was getting my
MBA, I fell in love with finance. And
and so I made a huge pivot into corporate and investment banking
(07:53):
at JPMorgan. And this is, again, it's so interesting. It's it's
almost like your kaleidoscope. And every time you turn the handle, I
see a completely interesting individual emerge because
you do very well in finance. I mean, so almost everything you've
touched, you've been successful at. Were there any transferable
skills? Because one of the things I'm trying to do is as I talk to
(08:14):
youth is to realize that every situation you're in
is an opportunity to learn, to grow, to bank
skills. Looking at your life, the MBA, speech
pathology, advocacy, performing arts, the values
instilled, into your sister and your family, your parents, Is there a way to
say at this stage in my life, I really feel I have
(08:37):
these superpowers? I think in every job, particularly, you know, I was still in
my twenties at the time. You learn new skills and you learn
everything. But what threaded it all together was I have
and I know I'm, again, fortunate I have a strength in terms of
my team skills, communication
skills, connection with others. And that really has tied
(09:00):
it all together, which, by the way, led to yet one
more career change and the most important one.
So after 10 years in corporate and investment banking,
and in the middle of that, by the way, I met and then a year
later married my husband, David, who, as you mentioned, is up here in
Canada. So I moved from New York to Canada, a
(09:22):
huge change on top of everything else, spent
another 5 years in banking, and then pivoted
to executive and board search with the global executive
search from Egon Zehnder, where I spent 25 years and really
thrived. As you look at, like, 25 years you spent
there, and if I said the rewards were intellectual,
(09:44):
I I was stimulated, emotionally, I
was grounded, hands, I got to put some people in
some very important positions or financial rewards, what mattered the most to
you during the time you were building your career and now as you reflect on
it? I've always loved everything I've done from a career point of view, or I
wouldn't have done it. I would have made a change. But at Aegon Sender,
(10:06):
I had a chance to place some of the
most important exciting CEOs, c
suite executives, and board members, and really make a
difference in the lives of Canadians, and many of these searchers
were international. But on the other hand, I also got it was
a win win for the candidates because they their
(10:28):
careers were bolstered, and it was great to see the difference that
they could make in the companies and organizations that they
joined. I I was so fortunate. I used to always say it was like going
to a cocktail party every day. It was huge work. It was long hours and
high pressure.
(10:52):
So now we're gonna move the story to the the heart of the matter.
You meet David. He's a Canadian. I'm glad he's a Canadian because we get to
bring you here versus, you know, the brain drain that I'm always worried
about. And I imagine you get married and you think that this
life is, you know, I'm going to instill the same values and work ethic in
my kids that my parents did in me. And you have 2 children, Andrew
(11:14):
and Ainsley. Today, they're grown adults. But take us back to the
time when you and your husband started sensing that something wasn't right. Who was your
oldest child? Andrew's the eldest. Okay. So talk to me first about what
you experienced with Andrew. From almost the time he was born,
Tony, David and I felt that something wasn't
right. His hands and feet in constant
(11:36):
circular motions. And unlike all of
our friends' babies that I knew, he never gurgled or talked to
himself or played in his crib. You know, we had intercoms in the room, and
we kept listening. Nothing. But the minute he woke up, he would
start crying and say, come get me, feed me.
And he had no self control when it came to feeding. It was pretty scary.
(11:59):
He would have downed as many bottles as we gave him without
stopping and without getting sick, which was surprising,
if we didn't control that intake. He also was
very, very difficult to soothe in those early days.
And we read every book we could, talked to
anyone we could about normal developmental behavior, but
(12:20):
we never could read about or hear about what we were seeing
and observing. You go to the doctor with this, and instead of the
doctor having empathy, they basically
label you an over concerned AAA mother from New York. I mean,
how did that make you feel? Because your intuition's wired, your
observation's wired, you're clearly that's who you've been since day 1,
(12:43):
wired in terms of how other people are feeling. It must have been just, I
don't know, confusing, chaotic, conflicting, maybe. How did you deal
with doctors that just said, you might be the problem? Well, it shook me. I
think it would shake anyone, but I was a first time parent.
I didn't know any better, and I had been brought up to trust our doctor.
He was the medical expert. He knew everything. I
(13:04):
remember one afternoon leaving his office and feeling
totally helpless, even questioning whether I really was
indeed the problem because every time he would discount
what I said, it would perplex me. It would make me despondent,
and it did take some toll on my confidence, which is
usually very, very strong. Of course, as I've since
(13:26):
learned, this discounting of caregiver concerns
is far too common. And I do empathize, by the way, with
doctors. They see a number of parents who excessively worry,
but there's a balance. Talk to me about Ainsley now. How how many
years after Andrew did Ainsley come along? Ainsley
is 22 months younger than Andrew. And what about Ainsley?
(13:48):
How did she sort of react in terms of what
you thought might be normal compared to what you were dealing with with
Andrew? Let me back up just one second if you permit me.
Sure. Of course. Because that affects her a great deal. Over
the next several years, David and I had increasing concerns about
Andrew. There was impulsivity, distractibility. There were
(14:10):
vocal and motor tics, anxiety, learning disabilities.
Yet all his teachers said, oh, he's keen and
enthusiastic. He learned to read and write with his peers.
He was eager to please, but he was also
very active, very chatty. He needed a lot of
reminders to focus and follow instructions. And
(14:33):
just like that doctor, who, by the way, kept discounting my
concerns and telling me, stop worrying. He's just a sensitive child.
He'll grow out of this. Again, very common. None of his
teachers thought he needed help. But by grade 3,
we had really heightened concerns about him. There
was inability to understand
(14:55):
abstract concepts. He couldn't maintain eye contact, and
he had terrible difficulty with change and transitions between
activities. I remember a group of neighborhood kids
playing, I think it was hide and seek one afternoon, and then making the
change to capture the flag. And Andrew just couldn't handle
the sudden change, and he just had a meltdown. And there
(15:17):
were some other issues too. But then Ainsley came along
22 months later and she was far easier as a
baby and a toddler. And she was very different. She was fun and
mischievous. And unlike Andrew, who was very rule bound,
she was a risk taker. She loved adrenaline
generating activities and she'd fly off stairs, climb on furniture,
(15:41):
but she also had some of the same similarities. She
couldn't sustain attention, but of course, we didn't realize that this
wasn't the norm. These were both our kids. And overall,
we were delighted with this captivating little girl who we thought probably
had none of the challenges Andrew did. What happens
in a relationship when you realize that
(16:04):
the path that we thought we were going to travel together as
a couple and as parents is going to veer very
differently now because your children are going
to require a very different set of needs
than you might have expected? It's very difficult. Let's be honest.
There's no marriage or partnership. Whether you have children with challenges or
(16:26):
not, that is perfect. But for parents and caregivers
like David and me, the stresses and strains can be
absolutely debilitating. You know, I've heard parents
disagree about everything from discipline to diagnoses,
therapy to medications. I think medications in particular
cause huge schisms. You know, one parent doesn't believe
(16:48):
in meds, doesn't believe their child needs it. And what
we have to remember is that these issues not only
divide partners, but the children know they have that inbuilt
antenna. And David and I have not been immune from
this. There's no question about it. We
have wanted to throttle each other from time to time,
(17:11):
and, you know, he rightfully sees me as overly decisive,
rigid, direct. And I see him as
not firm enough, too accommodating, slower to
make decisions. Of course, I have a pretty unrelenting pace.
But at the core, we trust each other. We lean on
one another, and we know that we're trying our best even if
(17:34):
it's not what we would ideally wanna do. So what advice can you give to
other parents? I mean, trust was a key component that I just heard because I've
heard some statistics about how situations like
this or losing a child early,
often end to marital breakup. That this is, you know, that because
you're not marching in step, because there's just too wide of a gap
(17:57):
in terms of what you might want and what David
might want. A lot of children are struggling with their mental well-being
and aren't embracing or haven't got the same appetite for
life that we might used to have because they're just living in all this negative
headwinds. That give each other the benefit of the doubt is the
core of what I say. And if you're going to
(18:19):
disagree about something, you need to talk about it. I think that's natural
and you've got to talk about it, but away from the kids.
And you what you really wanna do is act together as
harmoniously as you can in the children's best interest.
Even try to find some humor. You know, David and I joke about the
genesis of the kids' disorders. He has a restless leg, and so
(18:42):
I point at him and go, ADHD. And he points
right back at me with my perfectionist tendencies and says, back
OCD. So you really do wanna lean on each
other. It's open, transparent communication
just as it is with your children. So now you're donning a new
cape, still being an advocate, but you've now gotta become
(19:04):
warrior mom. You've gotta now navigate the
healthcare system. You've also got to have conversations with your
children. I have to imagine at times they've been bullied, laughed at
by other kids because they might be different. They can't change from one game to
another. So talk about when you decided
that this isn't just gonna be about my children, but I
(19:26):
also wanted to make it about helping other parents
dealing with similar situations. When Andrew
reached 9 years old, we were at my husband's
family's cottage in the Laurentians, north of Montreal,
and the kids were having a great time with their cousins, aunts, and uncles, and
playing. But on the 4th morning, out of
(19:48):
nowhere, Andrew ran out of the living room,
streamed upstairs, and started screaming for hours.
He was ranting and raving and kicking and even punching
holes in walls. And he didn't know what was happening, but this
happened almost every day for up to 2
hours. And within 1 month, he
(20:10):
started engaging in nonstop compulsive rituals, touching
walls repeatedly for hours, couldn't walk through doors for 20 or
30 minutes, and they escalated. He
placed his head against shrubs and car tires, put
knives in his mouth to feel them, and even got down on the
filthy floor and gnawed it repeatedly. You can imagine how I
(20:32):
felt. And when he said to me one day,
mom, I think I'm going crazy and I wanna die, you can
imagine how I felt. Now park that for a
minute. Ainsley, great, as I said, as a baby and
toddler, and then she got to school, and all hell broke loose.
She was disruptive, unruly, morose,
(20:55):
jumped on desks rude, constantly sent to the principal's
office. Those daily calls almost every day just killed me.
And she also had paralyzing anxiety and
couldn't read her friends' social cues so that she
gradually lost all her friends. And after she was
sent to the principal's office for the umpteenth time, she wrote me a
(21:17):
note that said, mom, I know I'm a bad
child, but I can't help my behavior. These are
shocking things for any parent or caregiver,
but I was determined to find them the right help,
and I promised them I would. And after I
said, we've gotta help others too, there was just
(21:40):
there there was nothing written from a parental perspective at the
time and no one really to help us. We had to be
out there and find our own path. You know, reading those notes, I mean, I
I have tears in my eyes in each one of the ones you described, and
I can't imagine as a parent getting those like that. But did that
suddenly fire you up in the sense that you knew that inside
(22:01):
each of those children, they knew what was going on and they wanted to
get better, they wanted help? Without a doubt, Tony,
not only my kids, but every child I know going through these
complex challenges are naturally frightened. They don't
understand what's going on and why there's such pain and havoc
around them. And even if they don't say it, and, by the way, this includes
(22:23):
teenagers, they want help. So
it's important to give them the help, but then to
go broader if you have the energy and time.
I am so empathetic with parents and caregivers who are
wrung out. I've been there, and you don't have to do it. Let
others do it who can, but hopefully benefit from it.
(22:46):
But you've got to sit down with your kids. It was so important
for us to explain to them that they weren't bad
children, that it wasn't their fault, that and to
separate them from their issues so that their identities weren't only
about what was going on in their mental health
and neurodevelopmental behavior. It was just critical and
(23:08):
not to hide or avoid information. All that is so
critical, but when you see your child in such pain and
in such distress and when you're so frightened with
what's going on, how can you not help them? I think there's an interesting
part of your book, Hold on Tight, A Parent's Journey to Raising Children with Mental
Illness, where you also talk about the isolation that
(23:30):
the parents can feel raising kids with
exceptional needs. Because it must be hard to be the parent who
has the child pounding the wall or jumping on desks or always in the
parents' or always in the principal's office. How
do you advise parents to deal with isolation
and to also reach out and find support so
(23:52):
that they have the strength to keep moving forward to not
only help their children, but also to help themselves? I
would say well over 50% of the calls and emails I
get from struggling parents deal with isolation that
what they're facing. So first, there are 2 different buckets.
There's family and there's friends. So with
(24:14):
family, you're stuck with your family members, and many of
them can be great, but many of them can be critical,
judgmental, or many offer solutions that they think
they know about and they really don't understand. So you do have to
learn how to limit your engagement with those folks, navigate around
them. I have strategies that I use, like I smile a lot. I
(24:36):
try to change the topic. Sometimes I go in another room, and I
silently scream. And, by the way, these strategies
have worked not only for me, but Andrew and Ainsley, as they've grown up,
are now using the same strategies. I modeled it for them without
realizing I had, and it's great to see. So you that's the
family side, and neither David nor I has any
(24:59):
family in Toronto. So, by the way, we had to depend on ourselves
largely. But with friends, it's much clearer
to me. I'm much more black and white. A number
of friends undoubtedly distanced themselves. I've had it happen.
It's extremely upsetting. I write in Hold Untied
about a friend whose daughter, when they my kids were very
(25:22):
little, had become seriously ill and had to spend several months
in hospital. And David and I volunteered to take her other 2
kids every weekend, treated them as part of our family. We
did their grocery shopping, a lot of other things. Well, fast forward
2 years to my kids, and I'm in crisis. I reach out to her,
and she's very empathetic on the phone, and I never heard from her again.
(25:44):
I don't think that's atypical. There's a lot of fear,
misunderstandings, and stigma that come from a lack of awareness and a lack
of education, and it's compounded for many of us
parents like me because we're so consumed with our children's
care that we have no time to invest in our own
friendships, but there's a silver lining. And that
(26:07):
silver lining for me has been other parents
of similar kids. It's a wonderful community,
so reaffirming, and to this day, propel me
forward. It's a community that for all of us
exist, whether virtually or, most importantly,
in your own community, physically. When
(26:31):
we come back, I wrap up my interview with Jan Stewart, my 3
takeaways, and then I talk a little bit about these extraordinary
parents, like Jan and Dave Stewart, that truly
matter.
Hi. This is Tony Chapman, host of the radio show and podcast, Chatter That
(26:52):
Matters. Did you know that only 1 in 5 youth with a mental
health illness can get access to the care they need? Well,
a big shout out to the RBC Foundation and RBC Future Launch
for supporting over 150 youth mental health organizations.
And in doing so, they help youth and their families get the care they need
and deserve.
(27:17):
But you must reset the expectations for your lives. This is another key
insight in the book. Many family and friends who want to do
the right thing but are scared, don't know
how. There's still, unfortunately, a lot of stigma.
Discrimination, it comes from a lack of awareness, lack of education,
misunderstandings. You're listening to Chatter That Matters with Tony
(27:39):
Chapman presented by RBC. Joining me today is Jan
Stewart, extraordinary parent and an advocate
for all parents who need the kind of help their
children deserve.
Early on in the interview, you made a a life decision to
move away from performing arts, to get involved in
(28:01):
what would turn out to be a lifetime of helping others, and you framed it,
I did so because I was assertive, not aggressive. Has that
lesson ever come back and served you well in other times
in your life? That early lesson of being assertive
versus aggressive has served me extremely well as an
advocate for my kids and for the broader community because
(28:24):
you have to put yourself in the other person's shoes
and realize that they're trying their best too in different ways.
They may be having a bad day. They may be having a good day, whatever.
But once you can be empathetic and do that, it really serves
you well, and you go a lot further. Talk to me about Andrew and Ainsley,
how they are today and what you and David
(28:47):
have done over this time to
hopefully that they'll never write a note like that again. I hope they won't. That
that would be absolutely terrible, but, both
my kids are really, really amazing. I I say that
they're my hero and the the heroes, and they really
are. So in Andrew's case, he grapples
(29:08):
still with impulsivity, anxiety, and his
obsessive compulsive disorder. He reformats his computer
repeatedly. He picks his lips and his
scabs till they bleed, and that's always a concern. He
asked for reassurance constantly and over apologizes.
But he has a wonderful full time job at
(29:31):
one of Canada's leading telecommunications companies, Rogers Communications.
He's been there over five and a half years, and they've been
true partners with us in terms of creating an environment of belonging.
He spent 10 years living in a lovely group
residence, but after 10 years, he thought and we thought he could handle
(29:53):
supportive semi independent living. And so I
found just a 5 minute walk from our house, a sunny one
bedroom, and he's been there for the past 5 or 6 years. David and I
take turns going down every morning to wake him up, prepare his
meals, make sure he takes his medications,
is tidying up, and off he goes to work. And he
(30:15):
has immense charm. I was just thinking the other day. He
went down to one of the first Toronto Blue Jays games of the
season. He's a huge Blue Jays fan. And we were on the
subway together at the TTC, and he
spotted across the aisle a young man with a Toronto Blue Jays
cap on. So we started engaging with him. And the next
(30:37):
thing I knew, all 5, 10 people all around us on the
subway are are all chanting, go, jays. Go. Go,
Jays. Go. He just has that effect on people. It it's absolutely
amazing what he does. And Ainsley Ainsley
has severe, severe executive function deficits that come
with her ADHD along with still overwhelming
(30:59):
anxiety. Now for those people that don't know what executive
function is, think of it, and I posted this today on
Instagram, as the symphony conductor in the brain.
It helps you organize time management, get things
done, and it also helps you avoid saying and doing the wrong
thing. Ainsley has a lot of trouble getting things
(31:21):
done, and it upsets me when she forgets to pick up her medications
or make an important appointment. But,
also, she has these severe learning disabilities,
extreme, and yet she was always determined to graduate from
university. And with a lot of support, she did. It was
absolutely breathtaking, and she's become the most gifted child
(31:44):
and youth counselor today working in the school system with
young neurodivergent children. And I'm convinced, Toni, it's her
own lived experiences as well as her deep intrinsic knowledge of her
brother that have made her so gifted. They are
amazing. Speaking of success and gifted, you write this book,
Hold Untight, A Parent's Journey to Raising Children's Mental Illness, honored
(32:06):
with a mom's choice award, wrote to be Amazon's top seller in the autism
genre last spring. Why did you write it, and
what are you most proud of? Because I asked you earlier, what was you most
proud about in your career? I'm gonna ask you the same question in terms of
publishing this book. In reflection, time well spent, and are
you happy with how it all turned out? I'm ecstatic with how it all turned
(32:27):
out, and you're gonna hear the same theme about my pride in
helping others. But I originally wrote the book as a
catharsis for myself a number of years ago. I started writing it,
But as I was doing so, it ruminated in my
brain and my mind, help others, because that's a core
part of who I am. And I also wanted
(32:51):
to educate the other constituencies, you know, family members,
friends, educators, health care providers, employers,
who don't often understand the
sometimes very complex and overwhelming overwhelming issues that
we parents face. As I look back, I
know David and I would have benefited so much from
(33:13):
being able to read about what other families experience, what
worked, what didn't, and learn from that.
So I did my research as I started shifting
and decided to be brutally honest. I do tell the
toll that these disorders bring on families' lives in detail,
but I also celebrate success, many successes,
(33:36):
and I give readers with the insights. But during the
research, I was surprised to learn that relatively little has been written from the
parental perspective, and I'm proud to fill the void. I think
that's so important. This is a book I wish I had as a young parent,
and that's probably what I'm proudest of. I always end my shows with
my three takeaways. And one that came
(33:58):
out that is really universal lesson is I
was assertive, nonaggressive. This observation
on who you are and what matters most to you is one,
I think, one of the most important lessons that anyone can
follow to help you identify the past in life that you wanna go
on and the fact that you knew this about you, yourself versus
(34:20):
denying or embracing. The second thing is this concept of
strength in numbers, that parents do feel such great
isolation, but if you find yourself in a community
of other people on similar journeys, and
each one of those people in that community are there to help each
other versus lecture or rule eyes
(34:42):
or dismiss or abandon, which has happened to you and with
people that don't have children with these challenges, I think it's so
important that anywhere you are in life is to find like
minded people that you can build trust with that
have your back and they have their back. And then the last thing that is
just this advocacy that you take it
(35:04):
upon yourself to say, when I read those
two notes, I knew I had to do more.
I knew I had to do whatever it takes. That alone
is exhausting, but the fact that you chose to have that not
only as your mission but a mission for others, to me, it's just
really what I find so wonderful and extraordinary about you.
(35:26):
I think Andrew and Ainsley were very fortunate that they
had you and David as parents, and I think the world
is very fortunate that you've taken it upon yourself to say,
as I blaze my trail, I wanna make sure I mark it so that
other people might be able to find even a little
bit easier path than I've gone through. And I think that's just a life well
(35:49):
spent, so I appreciate you joining my chat of the matters. I have to tell
you, I have to compliment you, Tony. I've never I've done tons
of podcasts. I've never had someone do as much research as you, and
it really shows in the questions you ask and in, you
know, and how you approach things. Thank you, Tony.
On my journey through life, I've had the privilege of meeting parents like Jan Stewart
(36:10):
and her husband David. Breck and Rachel have become dear friends of ours
in Costa Rica. Parents have once envisioned a life filled with
milestones and celebrations, the everyday joys of watching their
children thrive. But those dreams took an unexpected
turn. Could be because of their child's mental or physical
health, maybe later in life, their struggles with addiction,
(36:33):
a life altering accident, or the unimaginable pain of
loss. These parents face challenges that could easily have
unraveled their lives and their love for each other,
but it didn't, did it? And late nights then became a
familiar companion, not just from the exhaustion of parenting, but
from the worry that comes with navigating uncharted territories, finding
(36:54):
yourselves making tough decisions, prioritizing spending, not
on luxuries, but on therapies and treatments, and the tools their
children needed to simply get through the day. And the focus shifted
to what truly matters, love resilience, and the hope that
tomorrow could bring even the smallest of improvements. And in the smallest of
wins, they found a joy that few can understand. A child that
(37:17):
finally sleeps through the night, a word spoken after years, a a day
without pain. These moments, though small to others, are monumental
to these parents. They're like winning the lottery, not in dollars,
but in the currency of hope and progress.
Parents who have these children, your lives change and
often permanently, and dreams now have to factor in both
(37:39):
possibility and impossibility. But the ones I have the
highest respect for, it didn't matter. You accepted your
calling, profound commitment to stand for and stand by each
other and your family. And through every challenge, you became
advocates, fighters, offering the unwavering support your children needed
and in turn, what other parents in similar circumstances
(38:02):
needed. We managed to find strength and resilience, this
renewed sense of purpose, proving that even when life takes unexpected
turns, love and dedication can light the path forward.
As we close today's episode, I wanna give a standing ovation to Jan,
David, and all the parents out there whose life has changed,
not necessarily for their better, but for the better of others.
(38:26):
You are the pillars that hold up the world for your children. And for that,
you deserve our deepest respect and admiration. Thank you for being
part of the human race. Chatter that matters has been a presentation
of RBC. It's Tony Chapman. Thanks for listening, and
let's chat soon.
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