Hold On Tight: Jan Stewart's Journey Through Parenting, Neurodiversity, and Mental Health Advocacy | Season 3 Episode 320

When life hands you diagnoses for your children that reshape your entire world, what do you do? Jan Stewart, a tireless advocate and author, joins us to unravel the complexities of parenting through mental health and neurodiversity challenges. Her candid storytelling in "Hold On Tight" reveals the trials and victories of raising Andrew and Ainsley, two children with a tapestry of neurodevelopmental disorders. Stewart's reflections on the resilience needed to advocate for proper healthcare, educational support, and inclusive employment for her children are both heartbreaking and inspiring.

Navigating the labyrinth of mental health isn't a solo journey, and our conversation with Stewart underscores the pivotal role of allies, like educator Nora McKay, who illuminate the path with empathy and expertise. Stewart brings us into her world of constant learning and recalibration of expectations, as she details how early signs of her children's conditions evolved into significant challenges. Her experiences shed light on the critical importance of parental intuition, especially when professional opinions fall short, and the ongoing struggle to understand disorders like OCD and anxiety that are often shrouded in myths and misconceptions.

We wrap up our profound conversation with Stewart by tackling the broader picture—how mental health and neurodevelopmental disorders ripple across family dynamics, relationships, and societal norms. With humor and gravity, Stewart shares how her family chose to laugh amidst misunderstandings and celebrate the quirks that make her children unique. And because we understand the journey doesn't end with a diagnosis, we delve into the importance of self-care, embracing the unpredictable, and allowing ourselves to find purpose in the unplanned. Join us in this enlightening discourse, because these fucking feelings matter, and so does the way we navigate them.

#TheseFukkenFeelingsPodcast #Season3 #Episode320 #MentalHealthAwareness #Neurodiversity #ParentingChallenges #Advocacy #HoldOnTight #JanStewart #Resilience #HealthcareAdvocacy #EducationalSupport #InclusiveEmployment #NeurodevelopmentalDisorders #OCD #Anxiety #ParentalIntuition #FamilyDynamics #SocietalNorms #HumorAndGravity #SelfCare #EmbraceTheUnpredictable #PurposeInUnplanned #Empathy #Expertise #NoraMcKay #UnravelComplexities #CandidStorytelling #TrialsAndVictories

Transcript

Speaker 1: 0:02

you don't have to be positive all the time. It's perfectly okay to feel sad, angry, annoyed, frustrated, scared and anxious. Having feelings doesn't make you a negative person. It doesn't even make you weak. It makes you human and we are here to talk through it all. We welcome you to these fucking feelings podcast, a safe space for all who needs it. Grab a drink and take a seat. The session begins now.

Speaker 2: 0:33

What is up, guys, and welcome to these fucking feelings podcast. I am Micah. I got producer Crystal here with me today. Rebecca is in the middle of moving, so we'll see her soon, but right now she's and look, she moved to Florida. So I really think she's like taking an extended vacation for real, for real, right. And our guest today, arthur Jan Stewart. So, jan, a couple things I wanted to tell you right before we get started. So we took off the month of December and basically this whole month, so you're our first interview this year.

Speaker 3: 1:16

All right.

Speaker 4: 1:19

It sounds exciting, but we're a little crusty don't worry about it, it'll be fine.

Speaker 2: 1:25

I just want you to know. You know, sometimes I say things I ain't supposed to say. It's never to offend anybody, and if it is an opportunity to educate me, please do don't worry. One thing that we like to do here is we like to get our guests to introduce themselves. Really, because it's not. I don't like reading from a script. I feel like it's not real. And who can tell me more about you than you?

Speaker 3: 1:54

Thank you, Micah. I'm absolutely delighted to be here with you and Crystal and everyone who's listening in and watching. So I am a mental health and neurodiversity governance expert, advocate, author and parent. When I look back, I know how fortunate I am that I grew up in a warm, loving family and neither my husband, David, nor me really had known any true adversity in our lives before we got married. We both have our MBAs. We had great careers. We naively assumed that our children's lives would follow in the same successful paths. It was really rose-colored glasses on.

Speaker 3: 2:33

But finding out that we didn't have one we had two children with multiple, complex mental health and neurodevelopmental disorders came as quite a shock to us and really turned our lives inside out. Words like autism, Tourette syndrome, obsessive compulsive disorder, ADHD, anxiety, developmental disabilities the list goes on those words hadn't been part of my vocabulary before and it's been quite a harrowing journey with a lot of heartbreak at times. It's been quite a harrowing journey with a lot of heartbreak at times. It's a journey that continues today. We've had to work hard to navigate the complex health care system that exists across North America to 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 grew up, defined employers who are inclusive and accommodating.

Speaker 3: 3:29

We faced complications at every stage and new challenges at every stage might be complexities with co-occurring conditions or years-long wait lists for supportive housing. Wow, We've had to learn, very importantly, to accept the fact that our lives were not going to be as planned for or hoped for in many ways in order to move forward and this included recalibrating the relationships and support we could expect to receive from family and friends in the face of fear, misunderstandings and stigma. But the good news is the children's stories propelled me and, by the way, all of us in our family into advocacy years ago, and I've sat on about seven different boards and advisory councils in both Canada and the United States. I'm based in Toronto, but I've been very involved throughout North America, so I was vice chair of CAMH, which is Canada's leading psychiatric hospital. I was on the parent advisory council at Massachusetts General Hospital's Department of Neuropsychopharmacology it's a mouthful to say.

Speaker 3: 4:38

Yes, it is A number of others. I currently chair Carrie's Place Autism Services, which is Canada's largest autism services provider, and I write a monthly column for today's parent that you can find online.

Speaker 2: 4:54

Awesome, and we'll definitely make sure we include that link.

Speaker 3: 4:57

Oh, that's great. But from all these advocacy activities, so many parents and caregivers have reached out for help and I vividly remember being in their shoes, frightened, frozen, feeling isolated, not knowing where to turn or how, and really feeling terrified about the future. And that's what got me to write my book Hold On Tight A Parent's Journey with Mental Illness, and I'm thrilled by the way it's won the Mom's Choice Award and it's been number one in the neurodiversity genre on Amazon.

Speaker 3: 5:31

I am brutally honest. I tell the toll that these disorders bring on families' lives, but equally, I celebrate successes and I gift readers with key insights to ease their journey for both themselves and their children. I'm a hope ambassador, above all.

Speaker 2: 5:51

Definitely, and that is definitely what we need Now. Can you write one of these books about raising parents? Because me and my mama right now we ain't seeing eye to eye.

Speaker 3: 6:05

Been there.

Speaker 2: 6:08

But to be serious, how old are your children now?

Speaker 3: 6:11

They're in their early 30s now.

Speaker 2: 6:13

Okay, so wow, and then when did you know something was different?

Speaker 3: 6:19

Almost from the beginning, I think David and I said in our guts something's not right. Andrew's our older child and as a baby his hands and feet moved in constant circular motion and all our friends' babies would gurgle and play and talk themselves in the cribs. They'd listen on the intercoms. Andrew never did that and he had no self-control when it came to feeding. We actually did an experiment, Michael, when he was about six months old, and we said let's give him as many bottles of milk as he wants. Wow. But he downed five straight bottles in a row and would have kept going. Didn't get sick either, by the way. We were scared, so we stopped him.

Speaker 2: 7:00

Definitely yeah.

Speaker 3: 7:02

Right. So in hindsight we know these are a number of neurodevelopmental markers. But of course we were first time parents. We didn't know any better. And every time I approached our doctor he said to me Jan, calm down, you need to stop being an overly vigilant triple type A parent. Your kids are fine, and this is far too common. So that's the initial time. But it took years and years. Our doctor kept discounting.

Speaker 3: 7:30

We had growing concerns with both kids for the next several years. Andrew couldn't maintain eye contact, had terrible difficulty with change and transitions between activities, didn't understand abstract concepts. And Ainsley, who was far easier as a baby, she got to school and she was like boom, disruptive, out of control, rude, running around constantly at the principal's office and with that came paralyzing anxiety and the inability to read her friend's social cues. And it was very sad. She lost all her friends and I remember coming home from work one day and finding her curled up in a ball, sobbing why don't I have any friends? I mean, your heart just breaks. But there was a lot of impulsivity, distractibility, vocal and motor tics, anxiety, learning disabilities on top of everything else. And we were fortunate, micah and I'm. I say fortunate because shortly after Andrew's ninth birthday.

Speaker 3: 8:34

His disorders just burst forward. He was happily playing one day and the next day he erupted into a frightening meltdown r ranting, raving, screaming. This is from sensory and emotional overload, punching holes in walls, and it lasted for two hours and continued almost every day for months on end. And within one month, sudden onset of nonstop compulsive rituals where he would touch walls repeatedly for hours, couldn't walk through a door without counting to 14, 14 times, took him 20, 30 minutes to put on his socks, and these rituals escalated and became very scary. He even got down on the filthy subway floor and tried to not repeatedly put knives in his mouth to feel them. But I said we were fortunate, yes, and that's because finally his behavior and symptomology were so clear that he was fully diagnosed. So, andrew, autism, tourette syndrome, obsessive compulsive disorder, adhd and developmental disabilities, along with learning disabilities and Ainsley at first we weren't sure, you know, was she just copying her older brother, whom she idolized.

Speaker 2: 9:50

I wanted to ask really quickly what was the age difference?

Speaker 3: 9:53

Two years, Well, slightly under two years, slightly under 22 months. So, Ainsley and I said, when she got to school all these issues came out. So she too was finally diagnosed slightly differently. Also Tourette's syndrome, adhd and learning disabilities, along with severe mood and anxiety disorders.

Speaker 2: 10:15

Wow.

Speaker 3: 10:16

So that's the early journey.

Speaker 2: 10:18

Yeah, it sounds like it.

Speaker 4: 10:20

How was it in kindergarten? As you know, they have you go in and they have you do like a pre-kindergarten screening Right. None of the teachers caught on to any of that.

Speaker 3: 10:34

Absolutely not including our doctor. They both learned to read and write on time, they both had friends, they were social and outgoing Ainsley was mischievous and funny, but the cracks just kept building and, frankly, this was our local public school. They really tried but they just weren't equipped. And this, of course, I think it's much better today. I hope it is depending on the school, depending on the principal who sets the tone, and the teachers.

Speaker 3: 11:01

And if it's not better, it needs to get better teachers, and if it's not better, it needs to get better. That's correct, and we did go through the IPRC process to get Andrew into special ed, but then we pulled them. It just wasn't working.

Speaker 2: 11:13

Right, and you know what I was going to say. Jan, I don't know if you know how this works, but you can't answer my questions before I ask them, because then it's not an interview, okay, no, problem.

Speaker 3: 11:27

I could talk all day, as you see.

Speaker 2: 11:32

But I was going to ask did you think you know that it wasn't so much that they missed it, but just kind of like the schools being overworked and overcrowded and those kinds of things? And then you went and answered that and I was like, well, there goes that question.

Speaker 3: 11:50

No, I really think we were fortunate. Our local public school really did try, but no one was equipped, as I said. So when Andrew was in we say grade three, I know Americans say third grade we did a Ritalin trial for Andrew because we suspected ADHD, even though our doctor kept saying no, no, no, it doesn't eat it. His report cards were great and he was a behavioral dream, unlike his sister, you know, rule bound, wanted to please, hated to get into trouble. The Ritalin didn't work, partly because our pediatrician didn't know what he was doing either, wasn't qualified to titrate to find out the right med and what the real issues were.

Speaker 3: 12:29

But in grade four, the following year, he went into his class and his teacher was one of the first true angels, professional angels, that we've run into on this journey, and Andrew's OCD had burst forward at this point Again, he was peeling paint off all the classroom walls and he just couldn't focus. His brain was so consumed with these distressing, unwanted thoughts that forced him brain overrode reason, forced him to do the rituals and she recognized it. She also recognized that I needed to go to work, that I was a better parent for it, it was healthier for me, it gave me respite. Let me rebuild my own identity. So we would bring him in in the morning. She gave him such love. She held him back from French no homework. She really worked with us and it was in the middle of that year that we were able to find a better placement for her.

Speaker 2: 13:28

Okay, and she sounds amazing. Shout out to her. We'll go ahead and give her a shout out. What's her?

Speaker 3: 13:33

name Shout out to Nora McKay and she knows it.

Speaker 2: 13:38

We believe in shouting out. Now I guess I want to ask a question, but I feel like it should be asked at the end. But I kind of wanted to know while we were ask a question. But I feel like it should be asked at the end, but I kind of wanted to know while we were talking about it, because I know that there are parents out there going through similar things but don't want to believe that something's wrong with their kids. You know, like they see the signs that you saw and you're like something's off. And you know to them, of course, because of generational knowledge and just you know, mental health doesn't exist in this community or that community, and just the stigmas. They refuse to see it. What would you say to those parents?

Speaker 3: 14:15

Oh, I would say trust your gut, first of all. In your gut you know something's not quite right looking at friends and peers, that kind of thing. Trust that gut. I think what I frankly see more often are parents who disagree, one who believes and one doesn't, and there can be major disagreements about everything from diagnoses and discipline to medications and therapy medications in particular. One parent may say my kid doesn't need medications or may not believe in medications. So it is tough, I think if you suspect anything, even if you don't want to know it, face your fears. It's much less scary when you face your fears. Reach out to me, reach out to other parents and caregivers of kids with mental health and neurodevelopmental disorders. I think you'll gain that ease and we'll help you along the journey. It's such a wonderful community, that's what we're here for, but it's tough when one parent refuses.

Speaker 2: 15:20

Definitely, definitely. But your kid look, your kid should come first. I don't know I say that, but then I feel like, if you don't come first, then how can you put your kid first?

Speaker 4: 15:31

So that's a conversation for another day.

Speaker 2: 15:39

You know what, Jan? These are all the things like.

Speaker 4: 15:40

I think I would be a good parent You'd be amazing.

Speaker 2: 15:42

But then I think about all the unknowns and I have to sit back and think do I have the capability to love a person past their pain? And that's where it kind of gets caught up for me. It's like I don't know if I can do that because I'm still healing from my own. So, you know, it's like I kind of still have a journey to go to. I'm sorry.

Speaker 3: 16:07

It's clear to me, by the way, any trauma or distress that we as individuals have. I think they give us greater empathy, often understanding, insight, and they make us more understanding. Parents and caregivers and any parent would tell you has nothing to do with a child, with challenges or not that once that child is born, you love that child and want to protect them more than life itself. So it's just natural.

Speaker 2: 16:37

Well, I don't want to have any biological kids because I feel like I have screwed up DNA. I was sickly a lot in my life and I'm just like you know what. I don't want to pass any of this on to anybody else, but I have an issue with the fact that there are people in this world that don't know love. So I, you know, if I do have kids which I probably will, just not today um, it would be like fostering or adopting or doing something like that fantastic.

Speaker 3: 17:08

That's we need you.

Speaker 2: 17:09

That's great definitely, but it's scary, you know, I listened to your story and it was like, uh, you know, asking about like support that you had, especially in the beginning, especially with no one believing you or telling you that, hey, you're overthinking it. You know how? How did you make it through that?

Speaker 3: 17:27

it was very, very tough and sometimes still tough, so it wasn't just our doctor, of course. I mentioned at the beginning family and friends and this is very, very common and you know, overall I think as a group of parents and caregivers, I hear parents say that their families aren't interested, are scared to get involved, have terrible, erroneous impressions. You know your child's just not trying, or you shouldn't have gotten him vaccinated, or you're just, you know, bad parents.

Speaker 2: 17:59

It just goes on and on, or you need to beat his ass, is what they would say in my household Correct? If he's beating that ass, then this wouldn't be happening. Go ahead.

Speaker 3: 18:08

Crystal.

Speaker 4: 18:11

Or it's they just act. They're just kids and they just act like that. Or they act like their father or their mother.

Speaker 2: 18:21

Sorry, we just wanted to add to your list.

Speaker 3: 18:23

Absolutely. Both David's and my family's were extremely understanding, but to this day seared in my mind is Andrew's. I can't remember it was the second or third birthday party where we had three or four little friends over and David's family. We were at his family cottage in the Laurentian Mountains, north Montreal, and they were all having lunch outside and after cake they all had one piece and all the other kids got up to play and Andrew, with his lack of self-control and regulation, just sat at the table and kept shoveling in piece after piece and David and I were just horrified. I remember my stomach turning and they just gave it to us. It's his birthday. Let him be, he's perfectly normal. You would get that. On the other side, my mom, who was my closest confidant in the entire world and I really thought understood everything, turned to me one day and said Jen, if you were just a stricter parent and David was just a stricter parent, ainsley's unruly behavior would disappear. Wow, so that's the family side.

Speaker 3: 19:34

What I counsel all the time is what you have to learn to do is navigate around and limit your engagement with family members who are critical, who are judgmental, or I think the worst ones are the ones who think they have all the answers. That's the family bucket. What do I do? I smile, I change the topic or I try to. I leave the room. And, by the way, that has the added benefit through the years it's role modeled it for Andrew and Ainsley and they now do the same thing, which is fantastic to see. It's really great to see. It's a clear no win to engage in discussions about these conditions with these family members. There are other ones who are fine, but you have to be aware of that.

Speaker 2: 20:20

Now friends. I was going to say, though I don't think I would have left a table with some cake on it either. Look, y'all go over there and play, because I'm going to eat this cake.

Speaker 4: 20:31

Especially if it has whipped frosting.

Speaker 2: 20:33

Right, especially if it has whipped frosting. It's now that y'all go do what y'all going to do. I'm going to sit here and I'm going to eat this. I'm sorry.

Speaker 3: 20:40

But you can, you can joke about it. We can joke about it now, but it really was.

Speaker 2: 20:43

No, no, definitely, yeah, yeah, yeah. And I did want to say I do want to be invited to the next birthday.

Speaker 4: 20:50

You're invited.

Speaker 2: 20:59

I want to. I want to come to Montreal for the next birthday, Okay.

Speaker 3: 21:01

Getting to the friends part of this. So friends are a whole different ballgame, but to me, far more black and white. So there are certain friends who, for the same reasons lack of awareness, lack of education, leading to that fear, misunderstanding, stigma distance themselves. And I've had it happen and it's extremely upsetting and even more upsetting for me because I had no time to invest in my friendships. I was so consumed with both kids and what was going on and I needed their support.

Speaker 3: 21:32

I had one friend, for example, who had three children, young children. Example, who had three children, young children, and her youngest became seriously ill and had to spend months in our downtown sick kids hospital. So David and I volunteered and for all those months we took the other two kids in every weekend. They became part of our family. All week we did their grocery shopping and at December holiday time we bought the holiday gifts for their teachers. So fast forward, two years later, when I was going through these horrific times with my kids, I reached out to her Right and she was great on the phone, very sympathetic, and I never heard from her again. Wow, and many other examples like that. So when I said black and white, white, what I've learned through the years shed them, get rid of those non-supportive friends. But they're silver linings. And the silver lining for me, as I've mentioned, is those other parents and caregivers of similar kids, right, right I was waiting for you to snap I know, I know because she said that.

Speaker 2: 22:37

look, she did say that. Okay, I I give you the snaps. Now If I was Jennifer Hudson, I would throw my shoe at you. Right, all right show exists is to show people that, no matter what you're going through, there is a community there that will support you. You know, and I think that's why they exist. You know, it's like, yeah, we're all supposed to cohabitate and live on this earth and get along, but not everybody's going to understand you, but there is a community that does, and it just takes you doing a little bit of work to find it Correct.

Speaker 2: 23:16

It sounds like you did the work.

Speaker 3: 23:18

You have to put in the work. In fact, one of the first insights in my book is embrace the power of research. That research not only helps you find what you need but makes you a better advocate. By the way, and so you know, when we were starting our journey, even before the kids were diagnosed, I read everything that I could. There were classic books about OCD, like the Boy who Couldn't Stop Washing, by Judith Rappaport, or Driven to Distraction by Edward Halliwell about ADHD. I watched videos about autism and Tourette syndrome.

Speaker 3: 23:52

Once we knew that those were on the docket, so to speak, and David and I started going to parent support groups. Now, the first one we went to was for parents of kids with ADHD. As our kids, we knew they were bouncing off the wall, they were hyperactive, distracted, impulsive, but no one else had a child who was going through those daily two-hour frightening meltdowns or who couldn't maintain eye contact. And again, it was just through more work and research that we found both Tourette syndrome and autism are associated with those and we ran to those parent support groups. Now, in addition to that work that you're talking about, sometimes you have to create what's not there, depending on your community. So there was no parent support group for OCD at the time in Toronto, so I approached Andrew's psychiatrist and today we created one, and it was so reaffirming Okay.

Speaker 2: 24:52

So look, I have like 13 questions.

Speaker 3: 24:56

You ask anything you want.

Speaker 2: 24:59

I wanted to ask. Well, first I wanted to ask about your marriage. Like how did your husband and you stay so strong throughout it? And just you know, because I know there had to be moments where you just wanted to punch him in his face sometimes.

Speaker 3: 25:11

There still are.

Speaker 2: 25:14

So how do you not punch him in the face? You know?

Speaker 3: 25:17

Look, every marriage and partnerships face stress, but it's magnified when you're raising a child in crisis or who has any kind of disorder, disability or condition. The stress and strain can just be debilitating. And again, what have I heard before I get to us? I've heard parents blame one another, accuse one another, undermine each other and, as we talked about, there can be disagreements about so many things, and those meds being one of the big ones. But I counsel parents remember that your children have inbuilt antenna and they know when their parents aren't on the same page.

Speaker 3: 25:58

So, david and I, of course we want to throttle each other from time to time. You know, for me he's slow, at least in relation to my pace which, as you both can see, probably doesn't say much. He's probably far healthier than I am, he's much more accommodating than I am, he avoids conflict and it drives me up a wall. But in return, I know he rightfully finds me overly decisive, overly quick, you know, and he's correct. But early on we knew, of course we love each other, but more than that, we trust each other, we lean on one another and above all, we give each other the benefit of the doubt, even if he's doing not what I would do and I think I can do it better. I know he's trying his best and he does the same with me. So we even joke frankly, micah, about the genesis of the kids' disorders. David has a restless leg and so I point at him and go aha, adhd. And he points right back at me with my perfectionist tendencies and says aha back, ocd, ocd, right.

Speaker 4: 27:12

Well, there's different types of OCD, is that correct?

Speaker 3: 27:15

That's correct. So Andrew Ainsley has a very severe anxiety disorder but not OCD. Is that correct? That's correct. So Andrew Ainsley has a very severe anxiety disorder but not OCD. Andrew has severe OCD. So again, if we go back to so everyone understands what OCD is is these unwanted distressing thoughts that the person with OCD knows makes no sense. That's what's terrible about it. But their brain, as I said, overrides reason and forces them to engage in these repetitive, compulsive rituals in an effort to relieve the thoughts. Unfortunately, the relief is only temporary, so it causes an endless loop of these rituals.

Speaker 3: 27:57

Now, when Andrew when I said burst forward when he was nine, it was classic OCD. He had terrible unwanted thoughts that Ainsley would be kidnapped, we would be murdered, he would hurt someone. Now he learned through both medications and a type of therapy that's commonly used with OCD called exposure and response prevention. He learned to largely control it, but it rears its head. It's an endless roller coaster. From time to time and more recently his OCD has been bothering him, but it's a different type of OCD. It's called Touretic OCD or Just Right OCD. He doesn't get those terrible unwanted thoughts, but he gets a severe feeling of unease and discomfort that still force those rituals. Right now he's having a lot of trouble with scab picking and lip picking until they blow up and get infected.

Speaker 2: 28:52

My mom is doing that too. She scratches everything and then she's like I made myself bleed and I'm like I told you, stop scratching. I told you we need to get together, jan, because we need a book for parents. Okay, because I'm like I think I could just read your book and just apply it to my mom, cause that's what she's going through now. She's going through like this scratching phase and she's like causing scabs and picking and I'm like you know, we're, we're Hispanic, so I think moles are like hereditary. I have probably like I have 200 across my body and she has a lot also and she's always picking at them and I'm like stop it.

Speaker 3: 29:31

But so that may or may not obviously be OCD. I'm not a professional, you're not, but that certainly is an example of what you would see in heretic or just right OCD.

Speaker 2: 29:40

I'm not a professional. That certainly is an example of what you would see in Tourette's or Just Right OCD. Right. And my mom? She suffers from anxiety and depression and all those things too, so I'm always just up here telling her business and she'd be like you don't have to talk about me in every episode. Yes, I do.

Speaker 4: 29:52

Because you're a part of her too. It could probably be her anxiety too, as she's it could probably be her anxiety too.

Speaker 2: 29:59

Right, yeah, and it probably is her anxiety. I feel like, you see, for me it's I hate notifications, so I have to, as soon as they come on, I have to like, I don't even like, even if it's a text message and I don't read it, I have to like, make it disappear. You know, if I'm out of work for a week and I come back and I don't read it, I have to like, make it disappear. You know, if I'm out of work for a week and I come back and I have a hundred emails, I click mark all unread. They just can't be there.

Speaker 2: 30:24

I do that too, I just can't, they just cannot be there.

Speaker 3: 30:27

for me it's like let me help you both with something I think that most people would say. The definition of an issue crossing into a disorder is when it meaningfully interferes with your daily function.

Speaker 2: 30:42

Right.

Speaker 3: 30:42

We all have different quirks and things we do, but if it doesn't really have a significant impact on your day-to-day life, you can probably deal with it much more easily than a true mental health or neurodevelopmental disorder.

Speaker 2: 30:57

Okay, and is that how people should look at it?

Speaker 3: 30:59

I think so yes.

Speaker 2: 31:01

And that was. You know, we always say the same thing about um uh, weird example. But um, we're actually releasing an episode this week and and the woman we were talking to, um, was sexually assaulted. Um, but it came up in a conversation about people liking. Some people like to be choked during their playtime and to me it was kind of like the same thing as long as you're not really, as long as you're not at risk, you're safe and you're not being hurt, it's okay. It's like, if that's what you like, if that's what you like, then that's what you like, kind of thing. Like everybody is different. I can see how that can be triggering for one person or, to hear it, how it could be painful for another person. But some people enjoy that and it doesn't have to be trauma for them. You know it doesn't have to be what it is to you.

Speaker 2: 31:57

That's right In these cases these disorders are really trauma, very disturbing, and was there ever a time that you questioned yourself as a parent, or you and your husband went through that, where, like, did we do something wrong?

Speaker 3: 32:14

Sure it's not. Did we do something wrong? So much as well? Maybe it is so. When, way back when, we would approach the doctor and he'd keep discounting and tell me, essentially I was the problem. You know, it does toy with your I'm a pretty confident, assertive woman and it toyed with that and my self-esteem and I wondered am I really doing something wrong? Again, I was a first time parent. I didn't know, but I trusted that gut and so I think, and all along you know, I just did a post on Instagram the other day in talking to Ainsley about her executive function deficit. So again, for those that don't know what that is with ADHD, it pairs executive function deficit. So again, for those that don't know what that is with ADHD, it pairs executive function problems.

Speaker 3: 33:05

Executive function think of it as the symphony conductor in the brain. It's what helps us get things done. So organization, time management, multitasking, paying attention, and it helps us avoid saying or doing the wrong thing. And it helps us avoid saying or doing the wrong thing. Angie has severe problems with getting anything done and it's something she works on actively with her therapist. But I recognize that all these years I've been enabling it and because I didn't want her to stop functioning and after a while in her case, when I have done it in the past it builds to a point where she just bursts out and says I need your help desperately. And I've wanted to avoid that, and I'm wrong. I mean, she's in her early 30s now, so I've backed off, reminding her you're running out of this medication. You need to order it from the pharmacy. You forgot to make this important appointment. It's hard for me, it's not natural, but I'm trying to help her by backing off, learn to live with her mistakes, the consequences and hopefully, learn for the future.

Speaker 4: 34:16

So yeah, of course, there's never a perfect parent.

Speaker 2: 34:17

I think that's just being a mom, I know, and I was going to follow up and say, like, how much sleep do you lose over that? Because I know deep down inside you're like, does she remember to get the medicine? Does? She remember to do this. Does she remember to do that?

Speaker 3: 34:30

It's hard to back off and I think, crystal, you're right, it's true for all of us, parents and caregivers, but again, magnified in our cases when we know our children. You know, if she doesn't have her medications, it's a real issue, and if she doesn't get to an appointment that she has to or something for work, it's a problem.

Speaker 2: 34:50

Right, right right.

Speaker 4: 34:51

Definitely so. I have a daughter. She's eight now and she has a learning disability. She's eight now and she has a learning disability and we actually just went to the doctors and I told them that they thought that she had ADHD and the doctor did all these tests on her and the doctor was like I don't see anything wrong with her, I don't even see that she has a speech problem which clearly.

Speaker 4: 35:15

I know she has a speech problem and the doctor just brushed it off like if the teachers were just saying stuff to put her in special ed.

Speaker 3: 35:27

So a couple of points for you that might help. One is find another doctor, find a specialist. Yeah, you need to find one who will do a proper assessment because you need. The diagnoses are not your enemy. You need them at school to get the proper accommodations for your child. And you know, learning disabilities, anxiety, adhd are so rampant today. But if your child, you know, you know trust that gut. If you think something is wrong, it generally is again, of course you have to listen to your doctor, to teachers and later when your kids go up to their employers. But if what they say doesn't resonate with you, keep looking. So, crystal, keep looking.

Speaker 2: 36:13

You deserve it right, I'm gonna say, jan, one thing, jan, to teach you was, uh, that intuition, follow that intuition, right, stick with that gut feeling. Um. But, jan, while you're over here educating and explaining things to us, I wanted you to explain what autism was also so autism, a lot of people think, is a mental illness.

Speaker 3: 36:34

It's not. It's a neurodevelopmental disorder. It's neurologically based. All it is is differences in brain functioning. Now there's a wide continuum of autism. Every individual is unique, with their own capabilities and needs, and you'll see many very successful people who used to be diagnosed. We no longer use the term Asperger's and we no longer use the term high functioning, but those were words that were used Einstein, bill Gates, a number of others, entertainers. And then, of course, you go to the very other end, where an individual is non-speaking, needs 24-7 support and everything in between. I'm very proud of the autism community. They're really organizing themselves and advocating. It's wonderful to see. Not everyone has the capability to do it, but so many other marginalized and racialized groups have done a great job of it, and mental health is probably the last frontier. So we're getting better, they're doing a better job, but we do have to remember that differences in brain functioning are often just that differences, and other times they are deficits.

Speaker 2: 37:54

And now, how do you, as a new parent, deal with a diagnosis? And I guess not let it affect you and your child, because I've known people to pull back. You know. I've witnessed a parent being told something was wrong with their child and they were in bed for like three weeks and I'm like can you feed your baby? The baby is hungry.

Speaker 3: 38:17

You know there's nothing wrong with that. It takes it takes parents a certain amount of time to process and really absorb it, and then they're in a better position to move forward. In our case, the diagnoses were such a relief because then I knew we could start down the path of getting the right help, getting the right medications, getting the right therapeutic approaches, the right schools, you know, and doing everything that we needed. So everyone reacts differently, but we do have to give parents that time to grieve, to mourn. These disorders throw every family member's life into disarray. These disorders throw every family member's life into disarray. There's going to be fear, anger and resentment on top on top of that pullback as you're trying to absorb it.

Speaker 2: 39:04

And I can't tell you how many times I've wanted to just run away, but you don't see, and there go me speaking as a non-parent, judging and stuff like if you don't get your ass up. And then you came over here and just like, hmm smack you in the face, right.

Speaker 4: 39:20

That's basically what she did. I kind of spanked her real quick.

Speaker 2: 39:23

I was like I don't like you spanking me on my own show. But I'm sorry, friend, I didn't, I didn't look at it like that and I didn't that was. That was another snapping moment, right, because you know what is? It's just ignorant. Sometimes people are ignorant to things, and I'm ignorant to a lot of things, right? So and then I have a dark sense of humor, but it's like I know, not everything is funny, I just can't stop. That's okay, I'm working on it.

Speaker 3: 39:55

Humor. Humor, by the way, is such an important part of my coping toolkit. I give two examples. Years ago one of Andrew's teachers told the class that a certain school rule was set in stone. And Andrew's totally literal, he doesn't have abstract thinking capabilities, so I bet you know what I'm going to say. He raised his hand and he said so where's the stone kept? And another time he was vocally ticking from his Tourette syndrome. So Tourette syndrome are vocal and motor ticks, to simplify. And we were walking our dog who was a therapy dog, by the way in a park in Toronto and he was hooting, it was woohoo, and a passerby came running up and said to him are you okay? And I remember thinking, how's he going to handle that? And he, without batting an eye, he looked at her, he said oh, I'm just bird calling. I don't know how he found it. It was brilliant. But we do try to poke fun in our lives and have some humor.

Speaker 2: 40:55

And definitely, yeah, definitely. Sometimes I feel like it's only what they say you laugh to stop from crying. That, yeah, definitely. Sometimes I feel like it's only what they say is you laugh to stop from crying. One thing I think that is so inspiring about you is the fact that you recognize there was something was wrong and you were seeking answers. You know you were, you were actually looking for, you know was like I say it was cool for me to see you like we're relieved. You know the diagnosis kind of. You know it kind of helped, it helped, it helped. What do you think we have to do to help other people get to that point where you are, where they recognize that you know mental health or knowing about mental health or even having a diagnosis isn't a bad thing.

Speaker 3: 41:40

That is actually a good thing having a diagnosis isn't a bad thing. That is actually a good thing. We have to shout out about it for starters, which is why I wrote my book, which is why I do the column, which is why I speak all over the world. The more we give facts versus myths, we demystify it and then there's greater awareness. And, by the way, you'll see and I know it's true across North America today that even family doctors have much better awareness and are diagnosing and screening better and knowing when to refer. It's not perfect, especially in areas where there aren't a lot of services and supports, but it's getting better. But we just have to get out there. I remember talking to the kids' schools, their classes, and now I do to many other schools. Of course you do the same thing with companies, organizations. You know where Andrew works in particular. We've gone on. Both Andrew and I go in and do in-service education sessions. So the more we can let the world know about it session, so the more we can let the world know about it, the better, because when these disorders remain hidden from discussion, that's when you get the stigma, the misunderstandings.

Speaker 3: 42:50

Now the media is another factor, I think. Again, greater awareness, but there still are far too many. You know I love Law and Order, it's my favorite TV program in the world but even they have a lot of violent offenders who are homeless and mentally ill. Right, and that's you know. Most homeless people may have mental health concerns but they're not violent. Or movies years ago Fatal Attraction Glenn Close. Her character had borderline personality disorder and was violent and aggressive and obsessed. Those kind of things don't help. Or in the newspaper with Tourette syndrome, a small minority of individuals with Tourette have what's called coprolalia. That is the sensational bit that you read about, where people repeatedly blurt out obscenities and we've all read that. You know that doesn't help people's understay and it just builds those stereotypes and stigma.

Speaker 2: 43:49

Yeah.

Speaker 4: 43:50

There's actually a girl on TikTok that she has Tourette's and hers is like that, but she's speaking, so people are aware of it, and she said when she starts thinking about it, that's when it gets worse.

Speaker 3: 44:05

There's a very famous surgeon in well. He's retired now. Years ago in British Columbia in Canada he was a neurosurgeon, did brain surgery and he had severe Tourette syndrome with tics. But when he operated the brain is a fascinating place. Not one tic the minute he was done and you'll see many children in schools with tics and Tourette syndrome able to hold it together at school a bit or through most of the day and come home and just erupt because it's the safe place.

Speaker 2: 44:42

Definitely, and we're big on that safe place. It's one thing we talk about a lot. You always got to have your safe place, but it's sad that we don't live in a world where everywhere could just be safe, right, but but that's why we have these conversations, because hopefully we educate people and we can work on healing together, because I think that's all we really need, right, it's just to heal as a people and to recognize that these things are okay. And I know that you know you talk about Andrew and his work and Ainsley. Am I saying it right?

Speaker 3: 45:14

Oh, yes, yeah.

Speaker 2: 45:18

Don't name and it's like you can. You can talk about them now with so much pride and not saying you didn't have pride before. But I'm pretty sure there had to be a point where you didn't know how their lives are going to be when they got older and how scary that had to be.

Speaker 3: 45:33

When Andrew was going through those frightening meltdowns and those bizarre rituals, he told me one day he felt he was going crazy and wanted to die. Wow, and Ainsley was sent to the principal's office for the 80th time and wrote me a note that afternoon that said Mom, I know I'm a bad child, I can't help it. Wow, that's when you think, oh, my God Right. But David and I knew we had to pick ourselves up, sit down with them, explain they weren't bad kids, that what was going on wasn't their fault, and we separated them from their condition so that their identities weren't only tied to them and tied to that, tied to them and tied to that. We openly discussed medications, didn't hide or avoid information, so that we could empower them as they gradually grew older, very, very scary and there's still harrowing times.

Speaker 3: 46:34

Andrew grapples today with severe impulsivity, distractibility, the torretic OCD. He has a lack of filter and a lack of understanding social cues that lead to him over communicating, he interrupts and he shares over shares whatever's on his mind. But he has a wonderful full-time job. He lives in semi-independent living now last five, six years after living in a group home before, and he has an infectious charm he wraps everyone in love and warmth. I tell a story that he was recently at the barber and, with this lack of filter, shots up everyone, all the customers, all the barbers. And when he got up to pay, the barber said Andrew, you don't have to pay. The customer who just left was so impressed with you that he paid. And this happens to Andrew all the time.

Speaker 3: 47:27

And Ainsley, I would say she grapples a lot with social and communication deficits, with her ADHD, her executive function that we talked about, and very high anxiety, lots of social anxiety too. But she who has the most severe learning disabilities of anyone I know, she's in her early 30s. She just learned to tell time on the clock a few years ago. Not something you need today because everything's digital. Same thing with adding If I ask her today, what's two plus five? She has to count on her fingers. If I ask her today, what's a two plus five? She has to count on her fingers. But she not only graduated from high school, she graduated from university with a lot of support Unbelievable and she has become the most gifted child and youth counselor working with young neurodivergent kids in the classroom and I know it's because she understands she's been there and she knows her brother too.

Speaker 2: 48:22

Right, right. That's incredible. While you were talking, I was thinking about all the people that watch us or that are listening, and it's not their kids they're worried about. It's themselves. You know they're. They're listening to some of the things that you're saying and they're like, wow, you know why I do that, or the things that I do. What advice would you give to those people?

Speaker 3: 48:47

A couple of things. One is trust your gut. If you think something isn't there, go, seek help. And again, if that professional doesn't resonate with you, find another one. Just keep a second opinion. Third opinion doesn't matter. That's number one.

Speaker 3: 49:03

Now, I'm assuming most of the people you're talking about work in some capacity Ask yourself can you do the job as described, or would you benefit from some type of support and accommodation? Once you know what you know, once you either have diagnoses or know what issues you're dealing with, most people can benefit. And there's so many positives to the transparency of disclosing to your employer. It helps build partnerships that I always shout out about, integrated partnerships with everyone, and it allows you to get those supports and accommodations. And, by the way, if you don't, and then you have performance problems, you can't use your conditions. So that's the kind of thing that I would recommend Equally disclose to those around you who form your support community and you'll know who to shed in friends, and you'll learn who to shed in friends and you'll learn who to navigate around in family members. It's not an easy journey, but it'll be a much healthier and happier one in the end, I believe.

Speaker 2: 50:10

Yeah, and I agree. I agree because I feel like I kind of did that myself. So the first time I ever saw a therapist, I was 16, and I had what was called Guillain-Barre syndrome. The syndrome paralyzed me from my neck down and I was in the hospital. Look me and medical problems are like people talking about how they watch TV every day. I got so many stories right, but in this particular time they thought it was good that I see a therapist, mostly because I couldn't do anything for myself. So I was'm 16 and I lost all my independence and he came into the room and we were talking and the first thing he said to me is everything you are going through right now you caused. Yeah, I never wanted to see a therapist again after that.

Speaker 3: 50:59

Right, that's exactly right. And am I right that you've had cancer? Yes, yeah, so have I. So, in the midst of all this, I had 18 months of treatment for breast cancer.

Speaker 2: 51:12

You know, you officially are a superwoman.

Speaker 3: 51:16

You know what? I appreciate you saying it, but it's something that I refute all the time. We all do our best and some of some of us are just wired to do more than others, and that's OK. But I truly believe in my heart People do their best and that's good enough.

Speaker 2: 51:35

Right, right I am. I say the same thing I always think about. So I lost my dad a few years ago and I have a little issue with the fact that I don't feel like I mourn him the way I should. Of course, when he passed away, I cried and I had emotion, but I seem to like get over it quickly, or more quicker than what I think the rest of my family is, and so it's a place that I visit often Like why do I feel like I should feel differently? And it took me a long time to realize that I think I don't mourn him because I was always the best version of who I can be at the time to him and he was always the best version that he can be at that time to me, and that was enough.

Speaker 3: 52:22

That's exactly right, one of the biggest advice I give to parents and caregivers. Obviously, self-care is important and it's hard when you have a child in crisis or you know you can barely get through the day minute by minute. But part of that is being kind to yourself, which is not easy for me. It took me a long time to forgive myself for finding Ainsley one night when I came home from work, sobbing uncontrollably outside in the snow, barefoot in just her nightgown, because Andrew was having one of those frightening meltdowns and she was terrified and I should have protected her better.

Speaker 3: 52:59

And Andrew, he went to a special high school. Actually, it was an experimental high school for him. Well, they took him as an experiment because it was a well-known high school for kids with ADHD and learning disabilities and they weren't used to the co-occurring conditions. But he thrived there and he got it in his head, for whatever reason, when he graduated that he wanted to attend MIT. Now Andrew wasn't a candidate for any university or community college for that matter, but that's what he wanted, and it was my fault because David and I had told both kids and they had internalized it, which I'm happy they did that they would never be limited in their lives, by their issues, that they could be and do anything they wanted. And he rightfully resented me for a long time and I agreed because I gave him unrealistic dreams, wow.

Speaker 2: 53:55

And that's why you should tell your kids that Santa ain't real. No, it's the same thing you lying to them. There is no Easter Bunny, there is no two fairy, okay, and Santa is not real.

Speaker 4: 54:09

I see watches this, I'm sorry.

Speaker 2: 54:12

Dad, it's just what you said was deep right, but I feel like parents lie about the simplest thing and then, do you know the trauma I have to go through now to find out that Santa isn't real, when I could have just known from the beginning?

Speaker 4: 54:27

Kids just brush it off now. They don't even say like oh, you lied, you know they're just like.

Speaker 2: 54:33

Well, I got the gift I asked for, which is still the wrong message, and here I go trying to teach parents how to be parents, and I don't have no kids, right. And now, jan, before we close, is there anything that you would like to say, that we did not give you opportunity to say or to give out?

Speaker 3: 54:51

yes, I think, as I said at the beginning, reset the expectations for your own lives. You know and accept you don't have to embrace it, but accept the fact that your life is not going to be necessarily as you had hoped or planned, but it is going to be a meaningful, purposeful life. And with that you can either choose to be defeated by life or embrace it. I choose to embrace it and I want you to persevere through the most difficult of times. Have hope and hold on tight.

Speaker 2: 55:25

Awesome, and can I ask you what are some of the things that you do to maintain your self-care?

Speaker 3: 55:30

Oh yes, so I haven't been always the best role model. When the kids were in crisis, you know, I would just shovel in ice cream to get through the day, eat junk food, I told myself I didn't have time to exercise and this did lead to some health issues, probably culminating with my breast cancer a number of years ago. And I woke up and so ever since then and it's been many years now I exercise like a fiend. I'm in the gym five times a week. I find the treadmill really helps me think through my issues and regain perspective. I compete at a high level in duplicate bridge and that forces me to focus on bridge and not on anything else.

Speaker 3: 56:17

Humor, as I said, is really important. My career was very important and when a child of mine or yours is in crisis, critical short breaks even a 10 minute walk by myself or I love a warm bubble bath, it's so soothing really helps me gain that breathing room that I need. So I think the last thing that I do that's important, that, I think, surprises people. Separate yourself from your partner and your kids. Carve out part of your life as your own. You're going to burn out otherwise.

Speaker 2: 56:52

Definitely. I find, too, that I love being alone, maybe a little too much so, but, jan, I did have a happy end to my story. So about three years ago I decided to try therapy again and I searched and I searched and I searched and I searched and I found the most perfect person and she was completely different from anybody I ever would have thought, um. And she was my therapist for two years. Unfortunately, we kind of started becoming friends so we had to end the relationship, but she taught me how to talk, yeah, and to speak in truth, and to tell people what I really feel, and it's since then.

Speaker 2: 57:39

I can't shut the hell up, so I guess thank you and maybe not thank you, but I do want to and I say that to say because I don't want anybody to ever take that I'm saying therapy was wrong. I agree a lot with what you said throughout this episode and it's find the answer that makes sense to you the good news about therapy.

Speaker 3: 58:03

Since the pandemic particularly, so many therapists are doing virtual appointments. So if you're in an area that doesn't have a lot of services and supports rural or wherever do that research that we talked about and and then do your exploration as you have right and and that's kind of what I did.

Speaker 2: 58:22

So I started therapy during COVID and so we did everything virtually and she was in California and I was all the way in Virginia. So but, like you said, I did the research and I did the work. And I'm so glad that you and your husband did the research and did the work and that you were able to raise incredible children and that you wrote this book to teach people how to do it. So you did some research for them and then she's going to give you some research to go do, because in this lifetime we should have a little bit of happiness and we always shouldn't be in a trauma state or in bad moments. So, jan, thank you so much for being on. Crystal, thanks so much for filling in and just looking gorgeous over there and talking for like three minutes.

Speaker 3: 59:14

It was a delight. You were both lots of fun.

Speaker 2: 59:17

Thanks so much, and I'm going to list all of your contact information and where to buy your book. I'm going to buy a copy of your book, but I want it autographed, so we're going to need to work that out and I'll buy yours. I'm going to send you a pillow.

Speaker 3: 59:30

Good, I love that I was going to ask.

Speaker 2: 59:33

Yes, we will send you a pillow. I like squeezing it. It kind of this is my emotional support pillow, because sometimes conversations can get really deep. This is my emotional support pillow, because sometimes conversations can get really deep. You are our first interview of the year, so I hope we didn't do too bad you did great. Awesome and just. Happy New Year to everybody out there, because we haven't been able to tell you yet and we will see you next week Peace, love and blessings.