← The OCD Stories
The OCD Stories
Jan Stewart: A Parent’s Journey Raising Children with OCD and Neurodiversity (#490)
00:44:25
In episode 490 chat with Jan Stewart. Jan is a mental health and neurodiversity advocate. She authored the book, ‘Hold on Tight: A Parent’s Journey Raising Children with Mental Illness’. We discuss Jan’s parenting OCD story, neurodiversity,...
Loading summary
Transcript46 lines
- [00:00]
A
You're listening to the OCD Stories podcast hosted by me, Stuart Ralph. The OCD Stories is a podcast dedicated to raising awareness and understanding around obsessive compulsive symptoms. I do this for interviewing inspired therapists, psychologists and people who have experienced OCD. Welcome to the OCD stories and welcome to episode 490 of the podcast. And in this one I chat with Jan Stewart. Jan is a mental health and neurodiversity advocate. She authored the book hold on. A Parent's Journey Raising Children with Mental Illness. And in this one we discuss Jan's parenting OCD story, Neurodiversity, getting help for herself and her kids, why the patient is the whole family, separating her son from his diagnosis, reducing parental accommodation, advice for loved ones and parents, the importance of not forgetting the siblings, parental self care and much more. If OCD is interfering with your life, NOCD can help their licensed therapists specialize in exposure and response prevention therapy. The most proven therapy For OCD with NOCD, effective treatment that is 100% virtual is available for children and adults with OCD and most members get started within seven days on average. Now hassle just real science backed help and support between sessions. Begin your journey@nocd.com or the link will be in the episode description. So thank you so much to Jan for sharing her and her kids stories. I really appreciate it and thank you to you guys as always for listening. It means a lot and I hope this episode helps you in some way. And at the start of this interview Jan mentions a magazine article in which she interviewed me for. She mentioned it. It was in Today's Parent. I think that's what we originally were going to put it in and then it ended up going in Exceptional needs today just in case you ended up searching for it. But I put the link in the show notes if you want to check it out. And without further ado, here is Jan. Welcome to the podcast Jan.
- [02:05]
B
Wonderful to be here Stu.
- [02:07]
A
Yeah, it's good to have you on. And you interviewed me for an article which went out in Canada I believe so that was a fun experience.
- [02:17]
B
So that was Today's Parent. We did an article on OCD and it came out a number of months ago and anyone can access it online. If you just google Today's Parent and my name, Jan Stewart and scroll down you'll see the article. You did a great job.
- [02:33]
A
Oh amazing. Cool, thank you. Didn't realize it was open access. Cool, I'll try and dig out a link to that so you know today. Be good to Hear your story, your family's story. So yeah, start wherever you want to begin and, and share with the listeners.
- [02:48]
B
Sure. As I said, it's great to be here. And my story, Stu, is really one of hope and perseverance, of turning as a parent and caregiver, heartbreaking adversity and fear into determination, hope and resilience. I have two kids, Andrew and Ainsley. They're both grown now and both of them have multiple mental health and neurodevelopmental conditions. So our story really is one of what I call OCD plus. I look back and I see how fortunate I was to have grown, grown up in a wonderful loving family that gave me everything I needed. And my parents set high expectations and I adhered to them and succeeded. I had got my mba, I started a wonderful long career in business, and I met my Canadian husband, David, who had been brought up very similarly. But looking back, I see that both of us were raised really in a bubble, in a cocoon. And we never had had any exposure to either mental illness or neurodiversity or frankly to any true adversity. When I was pregnant with Andrew, our firstborn, we debated major issues such as should we let him suck his thumb or use a soother? Should we educate him because we're in Canada, in French or English, how best should we prepare him for as our parents had done? And I look back at that and of course, and it's all pretty ludicrous, those concerns. So as a result, neither of us was prepared when out popped these two kids who quickly caused us concerns. And again, I'm going to largely focus on Andrew. Both the kids, as I said, have multiple challenges, but he is my child with OCD along with his other co occurring conditions. As a baby, his hands and feet move constantly in circular motion and he never gurgled or talked to himself in his crib like other babies do. He also had no self control when it came to feeding. We did an experiment, Stu, when he was six months old and decided to give him as many bottles as he wanted. You know how the doctors always tell new parents, your baby will stop when he's full? Well, Andrew didn't stop. He actually downed in a row five bottles and didn't get sick and would have kept going, but we were scared of course, so we stopped him and the next morning I gave him just one bottle and he was just as happy. So we saw that even then there were problems with self regulation and these are neurodevelopmental markers. But our doctor scolded me stop being an overly vigilant triple type A parent. He said, andrew's going to be just fine, fine. I'm glad I didn't listen. It took me too long. But over the next several years we had increasing concerns about Andrew. There was impulsivity, distractibility, vocal and motor tics, high, high anxiety and there was regressive behavior. He couldn't maintain eye contact, he became a restrictive eater and he had terrible difficulty with change and transitions between activities. But our doctor kept discounting anything I brought up. He's just a sensitive child. He's cheerful and outgoing. Don't worry. Finally though, at age 9, he was happily playing one day and the next day he erupted into a two hour violent meltdown. It was frightening. Kicking, screaming, punching holes in walls, lashing out in anything and everything. And this continued almost every day for months on end. And within the next month, sudden onset of non stop rituals. He touched walls repeatedly for hours, couldn't put on his socks or go through doors for 20, 30 minutes. And as you know, the rituals kept changing and escalating. Outside, he would rub his head against poles, car tires, shrubs, he got down on the filthy subway floor and tried to gnaw it repeatedly and he even put knives in his mouth in order to feel them. These were driven by fears that his sister Ainsley would be kidnapped, we would die, he would fall through a drainpipe. Remember, he was nine and he was so miserable that he hit bottom one day and I hit bottom with it and he told me he felt he was going crazy and wanted to die. It was so upsetting. But there was an oddly fortunate situation with that because his behavior and symptomology were finally so clear that he was fully diagnosed. Ocd, autism, Tourette syndrome, adhd, anxiety, developmental disabilities and learning disability. So it's quite a suite of conditions that he has and these diagnoses. Unlike other parents and caregivers who I understand need time to process and absorb. For me they were such a relief. They validated all our concerns and they started me to be able to go down the path to be proactive and get him the right help. We were fortunate to find the right psychiatrist, although it took several months of me and I live in a major city, Toronto, but I had to go to the States to find someone who was qualified, qualified and experienced. Now it's changed. I want to make that point very clearly. Toronto has many resources, but then, no, I had to go to the States to find someone qualified and experienced in all these co occurring conditions and lifesaver he put Andrew on a number of meds, which he continues to take today. Of course, there have been many adjustments and titrations. Some have left, some have been added, new ones, but they have been life saving, as I said. And he needed the meds to kick in before he could even focus his brain on therapy. And we were equally fortunate to quickly find in Toronto an ERP therapist. And this ERP therapist also understood that with Andrew's adhd, he could not sit still in his office. They would go outside and walk around or go to a restaurant or do whatever they had to do. He also understood that Andrew needed modifications that many autistic children need, and we can talk about those later if you want. By the way, Andrew also needed a number of non OCD related therapies. Aba, cbt, speech therapy, occupational therapy, physical therapy, emdr, the list goes on. And some were effective, more or more or less, and some were absolutely not effective. So of course that seemed endless to me. Now, on top of that, as you well know, OCD doesn't affect only the individual. In the book that I wrote, Hold On Tight, the psychiatrist Peter Satmari, who wrote the foreword to the book, writes that the patient is in fact the whole family. That's so critical. First I had to learn not to accommodate the OCD along with David and Ainslie, but then I became Andrew's treatment partner, and I still am today. That word partnership I shout out about all the time now, as Andrew transitioned through his teens and into adulthood, he was doing better. There were, of course, ups and downs, but I became, and I think most parents and caregivers do, terrified about the future and what was going to happen when he was grown? Is he going to be able to function, take care of himself? What's going to happen when David and I are no longer around? Now, I thought we were over the worst with his ocd and in many ways we were. He's largely learned to control and manage it, but at times it resurrects its ugly head, there's no question about it. And in many different settings in the workforce, he's had both inclusive and non inclusive employers, and those non inclusive employers that he used to have. You'd see panic attacks, you'd see him increasingly upset and anxious and that would fuel more rituals with his current employer. That word partnership again has played such a key role. They've learned and know what to do, that when he gets upset, worried, anxious or excited, it can be positive. His OCD can ratchet up. There's no question about it his living situation is another area. Unlike many people with OCD because of his developmental disabilities, he needs some type of supportive housing. So he lived in a group home for about 10 years, but six or seven years ago was able to transition to semi independent living. I found a sunny apartment for him just five minutes away from us. Lots of oversight, but he loves it. But it is a major responsibility and I can see whenever anything goes wrong, could be a scratch on the wall. Dishwasher stopped working recently, his stress and OCD increase and he also has a lot of generalized anxiety. I love this saying that he says, he says, mom, I worry about worrying. And that stress affects his ocd. So about two and a half, three years ago, his psychiatrist added a tricyclic antidepressant to his existing medication which is Flomoxamine Luvox. Now it's also anafenyl Clomipramine and that really has given him more cushion to deal with his ocd. Today his OCD is three pronged. He continues to have classic textbook OCD driven by fears of illness or dying. So he's gone back to more intensive ERP and self taught. He also has just rhydotoretic ocd, which he has no obsessive thoughts, but an overpowering feeling of unease or distress. His TV stand got a tiny dent and he got locked on needing and wanting a new TV stand. And third, and the toughest one for him to crack is body focused, repetitive behaviors, BFRBs, in his case, lip picking and scab picking. There's humor in all this. However, sometimes I don't know if he's stimming with his autism, doing a ritual with his OCD or ticking. But he's a wonderful person, amazing, who has grit, determination, optimism and who spreads joy everywhere he goes.
- [13:59]
A
Amazing, amazing. And yeah, how do you, I mean maybe it's not. I was going to ask, how do you sort of different differentiate between. Is this sort of a ritual because of autism, is this a ritual because of ocd? But I guess as you said, maybe you don't need to. But how does he, Is he good at differentiating between them?
- [14:21]
B
Yes, he's excellent. And by the way, he always has been. And I think part of the reason for that, and I'll talk about the differentiation in a minute, is because one of the mantras I learned early on is to talk openly to the children. And we made sure, like when Andrew told me that horrific statement, I feel crazy, I want to die. We picked ourselves up, we sat down, we explained nothing going on is Your fault. You're not a bad child. We separated him from his OCD and other conditions, so his identity wasn't only tied to them and we didn't hide or avoid information, including about medications. So the key, and I think it's true and so important for all parents and caregivers is to educate and involve your child so they increasingly become empowered as they grow older and can take part in their own treatment and advocacy. Both Andrew and Ainslie do it today and it's great to see. Now it can be very difficult to distinguish between OCD and autism, let's say, because some of the symptomology on the surface, and that's key on the surface are very similar, especially those restricted interests and RRBs, repetitive and restricted behaviors that you find frankly in both restrictive behaviors being hyper restricted, interest being hyper focus, whether, you know, you'll see kids hyper focused and adults, trains, buses, could be on any topic. As a child, Andrew was and still to a large extent totally locked in on baseball, which is good, but particularly the hapless Toronto Blue Jays. But he knows every stat, about every player, stadiums, you know, everything, their schedule. The RRBs are much harder to distinguish. But the key fundamental difference is the reason for these behaviors. And that's what parents and caregivers have to realize. In autism, these behaviors can be soothing, self regulating, help decrease anxiety and self regulate emotions. And this includes stimming in autism, self stimulatory behavior. Andrew will often massage his shoulders or rub the top of his head in circles. You don't need to accommodate that. That's actually a good thing to support. And I also think these behaviors feel part of the child. Whereas in ocd, as we know, those intrusive thoughts are terrifying, disturbing. The child wants to get rid of them and there we don't want to accommodate those behaviors. That's because of those intrusive bad thoughts. And that's what you want to work to counter.
- [17:19]
A
Yeah, yeah, thank you for that. That's a good definition. And yeah, and I like what you said about keeping his identity separate from his, his difficulties. You know, they obviously are part of him, but they're not a defining, don't have to be a defining factor. You know, there's more to him than just these, these conditions, these labels.
- [17:38]
B
Yeah, yeah. And I think that's one reason many therapists, including Andrews, immediately had him name his OCD to separate him. He named his OCD Howie. Nothing to do with Howie Mandel. This is years and years before Howie Mandel came on the scene about his ocd. But that was his OCD separate from him.
- [18:01]
A
Yeah, yeah, Good, good. And just thinking for, you know, parents listening more generally or caregivers or anyone. What. So what other key points would you want them to know or be aware of in supporting their loved one or child with ocd? Ocd?
- [18:20]
B
I think there are several key points that really have more to do with caregiving than the child itself, but will really expedite what you do for your child in a positive manner. So the first, and it can be really a grind, is to embrace research. Stay current. To this day, I read everything I can. I go to the IOCDF and I present at conferences, I watch videos, podcasts. And yours is fantastic, right? All anything that I can do. I read research papers. And I'm fortunate because in my second career since I retired from business, I've not only written this bestselling book, but I write for many magazines, including for the IOCDF newsletter. And for instance, next month in Autism Parenting magazine, I've written an article where I interview Dr. Steven Shear, who's the director of research at Toronto's Sick Kids Hospital, which is a world leading hospital, who's just found a new gene never before associated with autism. That kind of information is wonderful for us all to have. So whether it's about autism, ocd, Tourette, whatever it is, keep current. Now, of course with that come you can't always do your research. You've got to take breathers. But you never completely stop. And I tell parents and caregivers, the Internet is your friend, but make sure you verify information with experts. We're all not a little bit ocd. And OCD doesn't come from not being strict enough or from your child being attention seeking. We hear all those myths all the time. So just verify that information. So research is one. I've already talked about the importance of talking openly for yourself. Oh, and let me go back to talking openly because this to me is critical. Stu, don't forget siblings. They're just as needy, but it's very hard intellectually. We know it. When your child is in crisis, how can you spend enough time with their other child? Coming home one day and finding Ainsley shaking in fear when Andrew was in the midst of one of those violent meltdowns, really was a wake up call for David and me. And so we started spending whatever time we had, and it was tiny, one on one with her. Harder if you have more than two kids in activities that she enjoyed. We sent her to sibling support groups. Perhaps most importantly, in age appropriate Language. We really dug in much more detail what was going on with Andrew. So we demystified it. That really helped her, which in turn helped Andrew. I think two more things that are critical to set the foundation to helping your child. One is I mentioned the word partnership. Insist on an integrated partnership approach with anyone touching your child, even as an adult. This goes across their lifespan. I make sure that the kids, psychiatrists and psychologists regularly communicate with one another and with me. If they don't treat me as an equal partner, as difficult as it can be, I look for another health care provider. When they were in schools, monthly meetings with the principal, the teachers, their external psychologists, and David and me. And now that they're grown, lots of communication and partnership again with their employer. As long as that employer is willing to be inclusive and create an environment of belonging. If not, they don't belong there, it's not going to work. So partnership. And then finally, I would say you've got to reset the expectations for your life. It may not be as planned for or hoped for in many ways, but if you accept it, then you can move forward. And that includes resetting expectations of support from family members and friends. Today, with family members and friends that are critical, judgmental, or the worst, think they have all the answers. And we all have people that say, oh, if only you did this or you're not being strict enough is a big one. I've learned to navigate around and limit my engagement with them. You know, I'll smile, I'll try to change the topic. If that doesn't work, I'll quietly excuse myself, go in another room, close the door and silently scream. And what's great is I didn't realize I was modeling this for the kids. But Andrew and Ainsley do the same thing today. And of course, resetting expectations means remembering to be kind to your partner, to your spouse. True for all marriages, but again, when you have a kid with OCD and other conditions, the stresses and strains can be debilitating. So give each other the benefit of the doubt. Remember, your kids have inbuilt antenna. They know when you're not on the same page and celebrate each success, no matter how small.
- [23:38]
A
Yeah, good words. Yeah, and I was going to ask you about that because as you said right at the end, having kids with any, any kind of difficulties, disorders, stuff going on can put a strain on relationships and marriages. And, and so it's. You've given some pointers there, but any other tips of like keeping the marriage strong because obviously if that. Or partnership strong, because if that weakens, there's even more sort of stuff added onto the the kids mental health conditions.
- [24:09]
B
Without a doubt. Yeah. I mean this is a challenge. And I know we all try our best. I'm convinced parents try their best. But I' parents and caregivers blame, undermine, accuse each other. You're not trying hard enough. Or your dad said this, but I'm going to do this, it's okay. And I think disagreements, particularly about medications where one parent doesn't believe in meds or doesn't think their kids need meds can cause big schisms. But again, our kids know. So the key give each other the benefit of the doubt. Know that your partner is really trying their best even if it's not what you would do. Try to emotionally support each other and be there for each other. Doesn't always work. I'm the first to tell you that. Don't forget humor again. Andrew with his autism is very literal. And years ago a teacher said to him, now Andrew, that rule is set in stone. And he looked at her and said where's the stone kept? So we try to laugh at ourselves and even more as partners. David and I joke about the genesis of the kids disorders. He has a restless leg and so I point at him and go aha, adhd. And he points right back at me, rightfully with my perfectionist tendencies and says aha, back ocd.
- [25:38]
A
Yeah, nice. Yes. Keeping humor in the relationship, I like that. And I once heard someone say with their partner what they did where their kid was really sick physically and going through all kinds of surgeries and stuff. They set a rule where after 8pm they weren't allowed to talk about their kids illness. And then it allowed time for them to talk about other stuff that's interesting to them or just their kids more generally about something they learned or because otherwise it can become all too consuming, right?
- [26:11]
B
It can. But I think we also have to be realistic. David and I tried, have tried that many times. We tried to say one night a week. But especially when a child has a mental health crisis, it's permeating and you know, there have been many times I've wanted to run away and hide where I've looked at myself and said why is this happening? Is there a God? You know, you question all that kind of stuff. So yes, it's a great goal to have and if you can do it, more power to you. I think what's worked better for us is to carve out part of our life as our own away from each other and Away from the kids. We don't have the luxury because of the extent of the kids co occurring conditions. And I know that may be more extreme than many of your listeners but we often take separate vacations. David plays golf or skis. I go to bridge tournaments or go to IOCDF conferences, other conferences, things like that. Hobbies. I love the treadmill. It lets me think through my issues and really regain perspective. Work for me has been a lifesaver again. It gives me respite from the challenges at home, separates me from the issues and it frankly has made me a better parent. Now that doesn't mean that my co workers. I've been very open, I am an open book as I said. But if either child needs me for any reason, no matter if I'm in a meeting with the most important CEO in Canada, it doesn't matter. I'm interrupted and I leave. They come first. So all that's important even when your child is in really deep crisis. 10 minute walk by yourself, bubble bath, closing the bathroom door by yourself. Anything to refuel and to regain some breathing room.
- [28:11]
A
Yeah, I completely agree with that. I do every couple months run sort of a parenting course and in that I talk about self care for the parents and often say it's not even a nice to have. It's. It's crucial because if you don't look after yourself, you're not going to show up for your kid in the best way possible. So I'll talk about find parents finding even micro moments, you know the, the Apple watches, you can do the mindful breathing for a minute. You can do that while you're on the toilet, you know like you can find those moments. You don't have to make long periods of time if you can. Amazing. But yeah, like you said, 10 minutes doing something, finishing the day with 10 minutes of a book you enjoy or that it's important to unwind, otherwise it's just the stress builds and builds and builds.
- [28:57]
B
Yes, it absolutely does. And by the way, I learned this the hard way. I ignored all my stresses and strains for many years and I had a very high pressure job which as I said was a lifesaver. But it culminated in a number of illnesses, surgeries and lastly breast cancer. And I endured four operations, chemotherapy and radiation in the midst of all this and had to deal with that and not. But it was a wake up call and so I started eating as healthfully as I can. I'm not, it's not natural for me. I love lots of junk so I, and I'm Lucky I'm thin, so that saved me. I've started, you know, I always worked out and fitness has become really very important to me again after a little hiatus there sleeping, but also reaching out for the support I need on top of that. And for me, I don't care whether you go to a healthcare professional, but for me it's parent support groups that have always been so reaffirming and empathy and understanding and we help and love one another and can. Can laugh about situations that other families might not understand.
- [30:12]
A
Yeah, yeah. Amazing. Yeah, yeah. Parent support groups I think are really important. So one thing. So you mentioned earlier about semi blanking now it was on. Yeah. Partnerships with everyone, with the whole system. Right. With the psychiatrist or with your son's work now. So it's obviously what my question is going to differ based on their age, but I think there's. You're right, it's great to be involved and have partnerships, but I also imagine some parents, and I kind of see this sometimes in my work as a child and adolescent therapist, some parents can be all in, but it's almost in an overbearing way which then causes a different problem for the kid. So how do you manage that kind of. I mean now I guess you, with your son's work, you obviously got his permission to like speak to the work first rather than going behind his back, for example.
- [31:05]
B
Oh, absolutely. Legally. And that includes his psychiatrist, psychologist, anyone. Legally, he's an adult and he needs my first. Now in his case he has developmental intellectual disability, so it's a little different. But that's true I think in every country.
- [31:21]
A
When he was a kid though, how did you manage that? Did you. Because I know you said earlier like you were honest with them about everything, which I really liked. Is it. Yeah. Did you, for example, like when I'm working with kids, if there's something I have to share like a safeguarding concern, I still would check with a kid. I'm going to do it regardless because it's in their best interest to protect them. But I'm still giving them the credit of like this is what I'm going to tell your mom. I kind of have to do and. Or if there's not a safeguarding. But I think, you know, your mom or dad should really know this. I think it would benefit from them. But I'm. I don't have to break confidentiality. I'll still get their permission and you know, because I want to treat them like humans, not just kids. So just. Yeah, I wanted to see because I Know, some parents will just say, no, I'm the adult, and they'll run. And then the kid feels betrayed. And then there's interpersonal issues between parent and child, which is a whole separate issue.
- [32:15]
B
Right. So first of all, safety first. If there's a situation, whether it's a potential suicide or child is threatening or, you know, any other safety concern, obviously you don't wait for permission. You might say something, but you've got to take care of that situation. You are their caregiver and you must remember that you're not their friend. You might be their friend and caregiver, but that's your primary responsibility. I think that base of talking openly for us really set the stage. But I think self awareness as a parent and caregiver is equally important. There have been times where David and I have disagreed about things the therapist has said or Andrew or Ainsley have said. And so we've checked in with the therapist and we've had over the years several sessions without either child, just with ourselves to sort out our communication because it's that open, transparent communication at the base of it all. And there's certain things we're always going to disagree about, but not the most important, critical things. One of us always takes the lead in one area, another in another area. We defer to another and we never disagree in front of the kids. Even today grown, we take that offside. And if, you know, I hope a therapist wouldn't be the right therapist if they didn't say, Jan, you're being overbearing, or Jan, forget about this, or David, do this, or whatever it is. David is much more private than I am. He's much less decisive than I am. And it takes him, in my view, way too long to make a decision. But he rightfully sees me as overly decisive and overly quick. And I can be too quick to make a decision and then regret it. You know, you have to be very self aware, check in with a therapist. At one point I even went to my own therapist when the kids were young to check in and see what am I doing right and wrong. That was helpful to an extent. But I, in our case, I found it more beneficial to work with the kids therapists.
- [34:29]
A
Yeah. And obviously you were open with your, with your children of like, we're gonna have a meeting with your therapist and you know, this is maybe what we're going to discuss or if you're not.
- [34:40]
B
Open, it's going to come back and bite you.
- [34:44]
A
Yeah, good way to put it. Yeah, absolutely. Yeah, yeah, yeah. And then the kid doesn't. Doesn't trust the therapist or psychiatrist anymore because they're like, are they colluding with my parents? Because if there's open. Yeah. Open communication, the trust remains.
- [35:01]
B
And by the way, I think that point, particularly when your kids are in school, that school must be your partner in the same way, if the school isn't open with what's going on. You know, we had notes coming home every day at the end of the day, which we'd return the following day. And at one point, I remember Andrew's psychiatrist put him on a new, very powerful medication. And while he started in a small dose, it was obviously too big to start with. And the next day, he fell asleep in class, which he had never done for three hours. But I had sent a note that morning to the school. In fact, they had known before we were seeing the psychiatrist, we were thinking about this. He's on this. So there was no problem. They knew what had gone on. It was reaction to the medication. Had I not done that bum, it would have been. That's just one small example. Ainsley. Andrew was a behavior dream in the classroom. Ainslie was just the opposite. Disruptive. Jumping on desks. Spent more time in the principal's office calls almost every day. If you don't work with the school, you can't get success. But if the school is not willing to work with you, and sometimes a school isn't, a principal might be, but a teacher might be, then you need to make a change.
- [36:27]
A
Yeah, yeah, yeah. Because if the school can then quickly see the kid as naughty or troublesome, as opposed to understanding the root causes of what's going on.
- [36:36]
B
Correct.
- [36:37]
A
Yeah. Yeah. You see that a lot of adhd, right, Kids just get labeled as naughty and then all come on.
- [36:45]
B
That happened to Ainsley. In Andrew's case, when he was nine and he was in grade four, his ocd, when it had just burst forward. One of the rituals he went through was picking the paint off the school hallways, which was chipped anyway, and he would spend hours doing that. His teacher that year was an angel. She knew what was going on. She would purposely shove me out the door every morning when I brought him to school and send me off to work for that respite and would only call if she really had to.
- [37:17]
A
Yeah. Nice. That's really good. Yeah. And like you're saying now with Andrew's work, you know, having a boss that's on board makes a hell of a difference to him.
- [37:27]
B
Without a doubt. So what did this employer do? He's been there about six and a half years now. Before he even started, they agreed to an in service education session with us. So Andrew and I went and we explained not only about his OCD and associated conditions, but about his strengths and how best they could work together to maximize his success. They've treated us as partners. There's that word again. I shout out about from the start. So they listen to our thinking, they share their thinking, they listen to our recommendations. The first of which was been to bring in a job coach for both the company and Andrew. And to this day, six plus years later, they continue to work together. They customize accommodations for him. What they get in return is an employee who is loyal, who is valued, who wants to stay there till he's 70 and be the best employee, not the best disabled employee.
- [38:26]
A
Yeah, yeah. That's the way to look at it, right? Yeah. His loyalty is no doubt high for that company and his work ethic is probably really good because he cares and he knows he's cared for and. Yeah, that's why it's important to invest in people from a business point of view, because it pays off. If you just look at it from a business money point of view, it's the sensible thing to do.
- [38:47]
B
Exactly. Right.
- [38:48]
A
Yeah. The right thing for the human. Cool. So is there anything else you want to say? Maybe words of hope for parents?
- [38:57]
B
Okay, sure. In my wallet, in my purse, I carry two things. One are the lyrics to the main stanza of the song Everything's all right from the musical Jesus Christ Superstar. And those lyrics say, try not to get worried. Try not to turn on to problems that upset you. Oh, don't you know Everything's all right Everything is fine. The other thing I carry is the Winston Churchill quote. If you're going through hell, keep going. There have been so many times where I felt I've been punched in the stomach. And just as I'm about to get up, another swing comes at me hard. You know, it is an endless roller coaster, but with grit, determination and perseverance. Whether you have OCD yourself or whether you're a parent and caregiver, you can succeed. We have to remember, no one is alone. There's help, there's hope, and we are all more than enough.
- [40:00]
A
Yeah, good, good words. Absolutely, absolutely. And like you said earlier, like, enjoy and celebrate the wins, no matter how big or small. And okay, so a couple random questions now. One is, you've got a billboard in Toronto. What do you want written on that billboard?
- [40:19]
B
I think what I would say is, don't go through mental health concerns alone, persevere and have hope.
- [40:30]
A
Yeah, I like that. And then you pick up the phone and call the 20 year old you what do you tell her?
- [40:39]
B
I tell her when you become a parent, which hopefully isn't at 20 in my case, trust your gut. You're going to know your child better than anyone else. Of course you have to listen to your child's doctor and anyone else they interact with. But if what they say doesn't resonate with you, keep looking, don't settle. Refuse to give up. Accept that life may not be as planned or hoped for. Those wonderful hopes and dreams of happy, successful children who are going to be just like David and me certainly didn't come true. But that doesn't mean life isn't. In fact, it's more meaningful and productive. And remember, pat yourself on the back. You are your child's future champion and warrior and you do your best.
- [41:33]
A
Yeah. Nice. Yeah. Thank you. And then lastly, anything else you wish you could have said or shared, and also if you want to plug your book, please do so.
- [41:42]
B
Sure. So the book's title is hold on A Parent's Journey Raising Children with Mental Illness. It came out just about two years ago and became number one in Amazon in the neurodiversity and mental health genre at the time and it's won many awards. The reason I wrote the book is because of the Children's journey. The journey led me into all kinds of advocacy. I currently chair the largest autism service provider in Canada. I'm very active with the IOCDF both in the US and Canada, and many other organizations. But that advocacy has led many struggling parents and caregivers to reach out for help over the years. I vividly remember being in their shoes. Frightened Rose, feeling isolated and alone, not knowing what to do or how, and terrified about the future. And so I wrote hold on Tight. Not only to be brutally honest and I am, and tell the real story for families, but also to celebrate those successes and to give readers. I think There are about 13 key insights to ease the journey. So that is absolutely any advice I wish I had had as a young parent I would have benefited from. And I hope the book does the same. Remember, there's a whole community of us like minded parents and caregivers out here waiting to hold you, embrace you, help guide you and laugh together. You are not alone.
- [43:16]
A
Yeah. Nice, Nice. Thank you. And also put a link in the show notes to the book. Jan, thank you so much for sharing your story, Andrew's story, your family's story. I appreciate it and hopefully it's helped. No doubt it's helped parents out there.
- [43:31]
B
Great to be here Stu. Thanks for inviting me.
- [43:33]
A
Thank you for listening to this week's podcast and thank you to our Patreons who helped make this episode possible. And if you would like to find out more about Patreon and the rewards and benefits, then there will be a link in the episode description. If you enjoy the OCD Stories podcast and would like to support us, please subscribe and rate the show wherever you listen to the podcast. And thank you to NOCD for supporting our work. If you want to find out more about nocd, you can click the link in the episode description and quick disclaimer Guys, this podcast is not therapy. It is not a replacement for therapy. Please seek treatment from a trained professional and until we speak. Take care.
- [44:17]
B
Sam.