Episode 66: Pursuing Community While Parenting Special Needs Children with Jan Stewart

🎶 Podcast Intro: Welcome to the pursuing uncomfortable podcast, where we give you the encouragement you need to lean into the uncomfortable stuff life puts in front of you, so you can love your life. If you are ready to overcome all the yuck that keeps you up at night, you're in the right place. I am your host, Melissa Ebken let's get going. 🎶

🎶 Episode Intro:  Jan Stewart should be running the world. I have never met a person so accomplished and so capable in my life. And it is a real pleasure to have her with us today on the pursuing uncomfortable podcast.  

She spent most of her career as a senior partner with the global executive search firm Egon Zehnder. And she and her husband raised two children with multiple mental illnesses. She has written a book, a brutally honest memoir, titled Hold On Tight: A Parent's Journey Raising Children With Mental Illness. And it describes the roller coaster journey that she and her husband and her children had and still have in their lives. 🎶

Episode:

Melissa Ebken  0:00 
Hi, Jan, welcome to the Pursuing Uncomfortable Podcast. How are you today?

Jan Stewart  0:05 
I'm delighted to be here, Melissa, thanks so much for having me.

Melissa Ebken  0:09 
Sure. And you're joining us from up north, I believe

Jan Stewart  0:12 
In fact, we're having a little storm as we talk in Toronto. Yes.

Melissa Ebken  0:18 
Well, hopefully it won't amount to too much or linger too long.

Jan Stewart  0:21 
We're used to it.

Melissa Ebken  0:23 
Yeah, I'm sure you are. Jan, you have so many things great going on in your life right now and in your profession, where would you like to start? Tell us a little bit about what you do.

Jan Stewart  0:36 
I'd be delighted to. So if I give you some background, because I think that'll help a little bit. I grew up in New York City. And my husband grew up here in Montreal, which is why I moved to Canada. And after we got married, I continued my job. I was doing corporate and investment banking at the time, and then switch to executive and board search and assessment and most of my career was spent with the global executive search firm, Egon Zehnder. I had a great career there. And we decided about a year after we got married to have kids. Neither of us had known really true adversity in our lives before. Fact that the kids changed all that. So I have two children who have been through quite a journey. They both have multiple mental health disorders. So my son, Andrew, has Autism, Tourette Syndrome, Obsessive Compulsive Disorder, ADHD and learning disabilities. And his younger sister Ainsley also has Tourette Syndrome, ADHD, and learning disabilities, along with severe mood and anxiety disorders. And they really placed you know, they've really faced some heartbreaking adversity, but also some wonderful highs, both of them and we can discuss some of those today. But what this journey did for both my husband and me was propel us into governance and, in fact, the kids also. So in my case, I've sat on six or seven different boards in advisory councils in both Canada and the United States, including CAM-H, which is Canada's leading psychiatric hospital. I was on the Parent Advisory Council at the Department of neuro psychopharmacology at Mass General. And four years ago, I joined the board of Kerry's Place Autism Services, which is Canada's leading and largest autism services support organization. It actually serves over 8,000 individuals with autism and their families every year, across the entire life spectrum, full suite of community and residential supports and I became its chair this past August, I'm very proud of the organization. It's from all that governance and advocacy work that we've all done that years ago, a number of parents started reaching out and contacting us asking for help. As you know, Melissa, these are parents who are struggling, who are very frightened, don't know what to do, where to turn, they feel alone. And from that, I said, You know what, when I retire, which I did a year and a half ago, it's time to pay it forward. And so I've written my book, Hold on Tight, A Parent's Journey, Raising Children With Mental Illness that will be released this March. But it's already up for preorder. We can talk about that later, too. We will. Yeah, oh good. But the book really is there for my mission. So on the one hand, I want readers to understand the brutally honest toll that these disorders take on families lives. And I hope nothing back. But I also want to celebrate successes. And most importantly, I share key insights to help families, both parents and children optimize their lives. And that's really my mission today, to inspire and empower parents to persevere through the most difficult of times. To have hope and know they're not alone. They can do it.

Melissa Ebken  4:20 
Jan, let's be honest, parenting in its best days, yes, is hard in the right with pitfalls and difficulties in many minefields, let alone when you start adding in challenges, and I can't imagine the diagnostic nightmare you went through with multiple diagnoses with each of your children.

Jan Stewart  4:43 
You're absolutely right. So when I said it was quite a journey, the first thing you have to do is try to find the right diagnosis. So almost from the beginning with both kids. My husband David, and I sensed that's something wasn't right. And when we look back, there were a number of that we now know our neuro developmental markers. But of course, we didn't know at the time we were new, inexperienced parents. So things like Andrew had no self control when it came to feeding. Our doctor, our family, friends all said, just feed him till he's full, he'll stop. That's what babies do. Andrew never stopped. We actually did an experiment that I talked about in the book when he was six months old. We fed him five straight bottles, and he would have happily kept going without getting sick. Unless we had, but until we stopped it, sure. We were scared. And the next day, we decided to control his intake. We gave him one bottle. And we were surprised to learn he was just as happy. So there was no self control. He didn't gurgle or talk to himself in his crib like other babies, he demanded to be picked up. He cried a lot. There were a lot of tantrums. He was very clingy to me. Lots of different things like that. But unfortunately, every time I called our pediatrician, and said help. He turned back at me and said Jan, stop being a Triple type A, be overly vigilant mother from New York City, your kids are fine. And this is very common. I hear it from other families, unfortunately, pretty regularly. But I should have trusted my gut. And over the next number of years, there were increasing concerns with both kids. No, Andrew was rule bound. But he couldn't maintain eye contact. He didn't understand abstract concepts. He was very impulsive, high anxiety, tics, learning disabilities. His younger sister Ainsley, who was a dream as a baby and toddler and we thought, we can relax, that's fine. She hit school and she was totally out of control. Disruptive, sent to the principal's office everyday, rude. Well and then came a lot of anxiety, fragility. Also, tics and learning disabilities. Couldn't read social cues. And in the book, I discussed the fact that we were so fortunate and it seems odd to say it, it's a bit of a paradox, I'm going to come back to it that Andrew's obsessive compulsive disorder and Tourette Syndrome, first forward exploded shortly after his ninth birthday. They were so severe, so extreme, that it was only at that time that he was clearly diagnosed. And that in Ainsley's case, we didn't know, if she copying him but her behavior was so vastly different. And so out of control, that she too, was clearly diagnosed. So that's the first step. And when I discuss the Tourette syndrome and the OCD, they're bizarre in terms of what his behavior was. We were fortunate that although I had been looking, and this is the paradox I was talking about, we'd been looking for years, but not seriously because everyone kept telling us everything was alright and that I needed to calm down. But when finally that burst forward and he was diagnosed it, it was clear, there are many families. Just as in habit, their misdiagnosis, wrong medications, wrong therapeutic approaches. All because these disorders cross over each other so often and so often, and it's confusing. So you really have to find a psychiatrist who specializes who knows what these disorders are. We actually had to end up going to the States, a Sick Kids Hospital in downtown Toronto is a fantastic hospital world round. But they said to us, you know, we can help you to a point. But in the US where the population is 10 times bigger, they see 10 times as many kids. So I made numerous calls to hospitals and psychiatrists east of the Mississippi because I wanted to be relatively close. And Dr. Joseph Biederman at Mass General's name kept coming up. He very sadly just died, last week. And I'm heartbroken but he's been an angel. Andrew will tell you that he saved his life. Ainsley feels so indebted to him. So that's on the diagnostic front. And by the way, as you probably know, Melissa diagnoses can change over time.

Melissa Ebken  9:39 
Sure, but before we go there, I just can't get over the fact. You were a very accomplished woman. I mean, assume your husband was an accomplished man. Correct. Very. And as a parent, when your kids struggle you take it so personally, and I can't imagine in your position how that must have been for you, as a mom that just couldn't fix it, or just couldn't make it. Right. Right, that had to do a number on you as well.

Jan Stewart  10:09 
Oh, it absolutely does, but maybe not in the way you think. And everyone responds and reacts differently. So I can only talk about our journey and what we experienced. I was like a dog with a bone. And I believe that you've got to persevere, you keep hearing that from me. It's that grit determination. You've just got to keep at it. But you, you know, you don't want to be overly aggressive about it. But we kept reaching out, kept trying to do different things. But until Andrew's disorders because he was older burst forward first, we really weren't too consumed with it. Once they did, it was like living in the Twilight Zone. There were so many days and there sure from time to time when I just wanted to disappear. When I would question why me, why us. Even though I know that's not the way life works, but it just didn't seem fair. And it's, and there's some families where you look at them. And you know, it's not fair, however it is life, and you can either embrace it or be defeated by. So the way I'm wired is not to rest, but to just dig. And I promised both children that I wouldn't rest and David wouldn't rest until we found solutions for them, and gave them the right help. And that's what we did. It meant, I told you about calling all the hospitals and psychiatrists in the US till we found the right one there. Same thing with psychologists, we had to find psychologists who were specialized in these disorders. Even general psychologists, often aren't trained and qualified to deal with the more esoteric mental illnesses. I'm not talking about mild ADD or anxiety, for example. We went to support groups. And that was and continues to be extremely reaffirming. And it's those other parents of special needs kids who really formed a community with us of love, of support, of encouragement, as we've done with them. And they're the ones that gave us help and propelled me forward. But you stop thinking about the future, you stop thinking about tomorrow. You don't even think about the next hour. You're just trying to get through the next five minutes.

Melissa Ebken  12:37 
How do you talk to your children about what's happening?

Jan Stewart  12:41 
You talk as openly as is age appropriate. That's my strong strong advice. You know, children with these disorders are frightened. They know something's wrong, but they don't understand what's happening in their lives. Why are they causing so much pain, home school, wherever they are with friends. And so you want to sit down with them, embrace them, talk openly without criticism or judgment is very key. And you want to listen carefully. Obviously, we all hear that but we listen really carefully and let them know they're valued and understood. I'll tell you a quick story if that's okay. OK. When when I said that Andrew's OCD and his Tourette Syndrome exploded, what I meant by that, rages are commonly associated with Tourette's Syndrome. Now, Tourette Syndrome are vocal and physical tics. And we had seen that on and off for years. And what did our doctor say he's just under stress, they'll disappear. But these rages just came out of the blue and they were terrifying, up to two hours a day for nine months. Screaming, punching holes in walls, kicking anything and everything in his way. And when he wound down from the rages, my heart went out to him because he would start crying. That was the signal. He was transitioning from the rage to back himself and he said, It's not me. This is not me. I don't know what's happening. I just, I feel like I'm going crazy. I don't know what's happening. I want to die. When your child says that to you. You feel like you want to die. You know, it's just terrifying. And with Ainsley who was so out of control, she came home from a really bad day. At school one day and left me a note and it said, Mom, I know I'm a bad kid. But I can't help my out of control behavior because of everything that's happening at home, and I just wept. But David and I picked ourselves up, forced ourselves to overcome those hesitations. And we sat down with the kids. And we said, just what I said to you, we promise you, you're gonna get help, and I'm not going to rest till we do it. We importantly explained that this was not their fault. They were not bad children, really important. And we separated them from their disorders, so that there's no question that disabilities are part of their identities. But it's not who they are only. A key point, we discussed medications with them openly and fully, so that they knew what every medication they were being prescribed was, what it was meant to attack, so to speak. And what the side effects might be, again, age appropriate language. This was key not only so that we could observe what was going on, but so that they could give us feedback. And that we could then talk to their doctors about what was happening. But it also informed, educated and empowered them. So that as they became older. And it's been wonderful to see they can self advocate to a large extent, and really get involved in their own treatment, which is what you want as a parent.

Melissa Ebken  16:21 
They were partners with you in this journey.

Jan Stewart  16:24 
 as much as they can be they are

Melissa Ebken  16:29 
And what's life like in your household today?

Jan Stewart  16:32 
Well, our life. I mean, look, the key to having children with these disorders, is accepting the fact that your life is not going to be as planned for or hoped for, that's absolutely the key. There are still times when I have anger, fear and resentment, and that's totally normal. And I hear this from the community all the time. So my life is different. But it has such purpose. And it's so fulfilling. You know, when David and I retire, we're not going to be free to leave Toronto and go to the warm Florida sun for winters or travel extensively. The financial burden is immense with these disorders. You're talking about medications that aren't all covered by insurance, even in Canada, and we're socialized, but you have private therapy, both kids had to go to private schools, by the way, not only in Canada, but in the United States. As they've transitioned into adulthood, now, not every family with kids with mental health disorders has to do this. But in our case, we have to take care of our children for the rest of their lives. So that's housing, transportation, clothing, you know, you name it. Yeah, so we don't spend needlessly, we watch our pennies. And you know, we take it from there, even though we are in positions of privilege. We're the first to recognize that. But I tell you wait, can I? Can I interrupt? I just, hi. You asked what life is like and I forgot the by far the most important. So while my kids have been through this heartbreaking adversity, and by the way, they know their lives are gonna be like this, the rest, you know, those cycles. I am so proud as them. Andrew and Ainsley have great full time jobs. They found their niches in life. Andrew was a charmer. I tell a great story that he was recently at the barber. And Andrew has no filter with his autism. And so he's chatting up everyone in the barbershop. And when he got up to leave the barber said, Andrew, you don't have to pay, the customer who just let paid because he was so impressed by you. That happens to Andrew all the time. And eating. Ainsley is such a valued, she's a child and youth counselor working with young autistic children. And I know that it's her own experiences, as well as her real deep knowledge of Andrew, that have made her such a valued resource. What I see in them, that I find so breathtaking is their grit. I'm gonna keep repeating this, that determination, that perseverance, they really have internalized it, and it's just beautiful to see. So that's what my life is like today.

Melissa Ebken  19:28 
I can see where they got their grit.

Jan Stewart  19:30 
Thank you. That's not to say that they're still not in crisis, up and down. Ainsley grapples today, and is working with her psychologist and psychiatrist on paralyzing anxiety and on what's called executive function deficits that come with ADHD. She has terrible difficulty organizing anything remembering what she has to do, and some of these are important appointments like a doctor's appointment or completing tasks. This is all part of ADHD. So she's working on that. And in Andrew's case, his impulsivity and anxiety are very high. And he's still, you know, his OCD is fantastically under control, but it still pumps up. So we still have to work on these strategies and approaches that way.

Melissa Ebken  20:20 
That's a lot. That is a lot. So Jan, you are wonderfully articulate, articulate, ironically, I stumbled over. You're very compassionate, so determined, and these children are so blessed and fortunate to have had you and your husband in their corner all of these years. And I would imagine you are an incredible blessing and incredible force in the communities that you're a part of these shared communities with other parents who are also struggling. So I want to commend you on that. And tell me a little more about your book, and how the people that those who are listening to this podcast can do a few things, one, how they can support others who are struggling with their own parental journey into how they can also advocate for better mental health for all kids.

Jan Stewart  21:19 
So those are great questions. And it's quite a handful. So I mentioned at the beginning of our chat, and I had gotten involved in a lot of governance and advocacy. And that's why I chose to write the book after a number of parents who had been struggling have reached out, you know, and I remember looking back and saying, Boy, I would have benefited so much from knowing what other parents had experienced, what worked for them and what didn't. And so when I started the research for Hold On Tight, I was somewhat surprised to find that there's relatively little that's been written about raising children with mental health disorders from a parental perspective. And I'm really delighted that my book fills that void. So as I said, I tell the un-sugarcoated reality some of the stories we've discussed, I celebrate the successes that I've also discussed. And these key types there 13 key insights for parents to help them and their children lead more fulfilling lives. These key insights are universal. It doesn't matter what income bracket, you're in what age you're in, race, religion, ethnicity, sexual orientation, you know, the whole shebang, they cross every boundary. Again, it's those themes of perseverance, determination, have hope that you're going to hear in the book. So that's the background. The book comes out in early March. But it is already available for pre-order through Amazon, both in Canada and the United States, Barnes and Noble, and Indigo in Canada. Your listeners can also access my website, which is JanStewartauthor.com. And they can sign up for a newsletter, we'll get a lot more information on the insights, insights, that, you know, we had one that we talked one of them about talk openly with your children. You know, there are a number of others that we can discuss, are you surprise listeners when they go to the book, but I'd be quite excited if people ordered the book. And if it resonates with you, please write a review on Amazon, it would mean a great deal. And lastly, I post every day as you, Melissa know, about mental health on both Instagram and Facebook at JanStewartAuthor.

And those are really informative posts. Oh good. Yeah, I've learned a lot. I also appreciated the poems that you put in.

You know, it's important. It's important when you have well, it's important for everyone. But I always say that parenting a child with a mental health disorder is just like everyone else parenting, but it's magnified. And we do try to poke fun at our lives, and have some fun and not take them too seriously all the time. So whether it's posting holiday poems on social media, that made fun and you know, each day I took a different mental health disorder and we did that. But there are also some great stories with the kids that I had a lot of fun with. Andrew and I were walking. He had a therapy. The kids had a therapy dog, a golden retriever when they were young that was absolutely wonderful. And the most calming presence in the house, and that included for David and me. And we were walking or one day Andrew and I in the trails in Toronto, and Andrew's Tourette was acting up vocally and he was hooting. So it sounded like whoo, whoo. It's a little bizarre. But we were outside and didn't bother me. I was so used to it. But a passerby came right up to him and said, Are you okay? And I remember thinking about, well I'm from New York. So I'm used to this, but I don't know how Andrew is going to take it. And he smiled and looked her right back in the eye and said, Oh, I'm fine. I'm just bird calling. I don't know how he came up with that. It was absolutely brilliant. So we do try to have some fun and, and keep some balance in our lives.

Melissa Ebken  25:29 
Neat. They sound like individuals, I would love to know, they sound like beautiful, wonderful, flawed and perfect human beings.

Jan Stewart  25:37 
They're my heroes. You know, what they deal with, every day is overwhelming at times. And yet they face like with optimism, and they keep going even when they're really struggling.

Melissa Ebken  25:53 
That is beautiful. Facing the world with optimism, even when you're struggling. That sentiment can carry so much for a lot of people I believe. Yes, I think that's true. And all of the links you mentioned, they will be in the show notes. There'll be a link to your website and a link to Amazon. And believe me, I'll have a link to buy the book and interact with the book in the shownotes. So make sure you check that out. And Jan, what would you like to leave us with today? Do you have any advice? Any forwarding actions? What is it that you would like my audience, our audience, to know and to do?

Jan Stewart  26:34 
I think my biggest advice to you is, when you're going through this, it's very hard to take care of yourself. And I'm not talking I am talking obviously about exercise, healthful eating and sleeping that's given almost, but reach out for the support you need and the help you need. Whether it's to psychiatrists, psychologists, social workers, support groups, other parents that I described, of special needs kids particularly, you will form a community and that will really help you. And keep that mindset that you can do it. I talked at the beginning about all the governance and advocacy work I've done. I couldn't start engaging or until the children's medications and therapy had really started to work. I didn't have the emotional reserves are the energy. And I know that many parents don't. But if you do, it's such a wonderful way to give back. And to really have an impact on the mental health agenda more broadly. So persevere, have hope. Hold on tight.

Melissa Ebken  27:43 
Thank you, Jan.

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