Navigating Parenting a Child with Tourette Syndrome

In this episode, I share a deeply personal journey that hits close to home for many of us navigating the complexities of parenting a child with Tourette Syndrome (TS). Alongside the insightful Rena and Maggie LaSalle, we delve into the world of occupational therapy (OT), Cognitive Behavioral Therapy (CBT), and the power of emotional intelligence. Our discussion centers on their son, Liam, and the innovative strategies they've embraced to support his growth and well-being. This episode is a beacon of hope and a toolkit of strategies for parents facing similar challenges, underlining the importance of understanding, patience, and continuous learning in the face of TS.

Timeline Highlights:
[01:47] Exploring Liam's occupational therapy journey.
[03:22] How cognitive behavioral therapy aids Liam.
[05:02] Focusing on Liam's emotional growth.
[09:42] The importance of emotional intelligence in children.
[11:28] Strategies for navigating stress and challenges.
[15:59] Finding what works best for Liam through trial and error.
[18:07] Adjusting routines for Liam's needs.
[21:01] Creating a supportive environment for Liam.
[26:49] Liam's transition to a supportive educational setting.
[30:07] Seeking the best medical and therapeutic advice.
[33:58] Lessons and advice from Liam's journey.

Links & Resources:
•New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS): https://njcts.org/ 

If you found this look at occupational therapy for Tourette’s helpful, don’t forget to subscribe, rate, and review! It really helps spread the word.

Transcript

Unknown: 0:00

Some days, we both had to walk out. Yeah, yeah, some days they work. Some days they don't work may work for a couple of months. And then the next couple of weeks, they don't work. I think there's definitely a lifestyle before CBT and after CBT. But you know, our journey got really tough in January, where we had every day was a really bad thing. And we were like, it couldn't be worse. And then tomorrow it was. And I think during that time, when we really had no idea what was causing all of this, we tried to keep calm and find little things out words and said, Okay, this work this time, it might work next time, and it might not, we need to collect our bag of tricks, so that on the bad days, we can throw out all our tricks.

Michael Leopold: 0:44

Welcome to the apptech brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the T s community. Thank you for joining us on this episode of the apptech. I am here today with Rena and Maggie LaSalle from Louisiana, and they are the parents of a boy with Ts. They've had a really interesting journey with their son Liam and his recent diagnosis. Both of you have been so proactive in learning about TRS and ensuring your son gets the support that he needs. Our focus today is on lessons and insights for successfully raising a child with TS No, I got connected to both of you through an occupational therapist that your son works with. And I think a lot of our listeners may not know about ot occupational therapy, and how this can be a helpful resource for people with Ts. So to kick off our conversation, could you share a little bit about the work your son has been doing with his occupational therapist,

Unknown: 1:47

he's been working with his ot Dr. Jan round on ways he can manage his body throughout. Yes, you know, since occupational therapy is about functioning in your life, day to day, using your mind and your body to function through this is paramount. So she's able to watch his body language and listen to his descriptions and then use physical or mental strategies to diffuse the intensity of the situation. And as you practice these strategies over time, they become a reflex for those intense moments. And it's something that you can go to, to maintain control over what you want your body to do in moment. Anything you'd add to that, with him working with Ms. Jan. She was also able to help us figure out things he's trying to say, it helps us learn these strategies were in at home, we can say okay, well, Miss Jan do and try to practice the same things that she does. And try to recognize those moments or those triggers or these leaky breaks that we may see. Then we have questions for new things, we'll reach out and ask her but it really helps Liam be able to manage when we stay on top of what we do as parents by monitoring and looking at how full his cup is, and how often he may practice these strategies, whether he likes to or not, or wants to, I definitely think our role as a parent is staying on top of it for him. That way, if we need to go to any kind of refreshes with Ms. Jan, you know, we're not starting from scratch.

Michael Leopold: 3:22

Can you talk a little bit about what the occupational therapist has worked with Liam on? Like, what is he learning to do when tics are getting bad, or when he feels that kind of pre monetary urge the stress of work, all of that coming on,

Unknown: 3:36

the whole idea of the CBT therapy is to find what what bothers you the most, because whatever tics bothering you, you can really hone in on that feeling and figure out what it is. So by watching and talking about the feelings that are happening in the body language at the beginning of the tic, you're able to find what starts it. So it's kind of like the beginning of a sneeze, if you stop it at the beginning, it doesn't happen. So once recognize what happens at the beginning, you oppose that. And, and continue to do that until the feeling has passed. Yeah,

Michael Leopold: 4:11

with the CBT part, I think of like the poor monetary urges I get before I tick sometimes I might find my body is like tensing or I'm in a bad posture. And it's really the stress on my shoulders that I feel like it's I comes out and like my physical presence before the tech and then during the tech, so things like that it sounds like they would help me understand that and like recognize when I'm feeling that way before the tics get really bad. You know, that could mean I need to go for a walk, I need to go chew gum, I need to go get some water like you know, have a moment to myself something like that to kind of recover from that is that the the idea? Pretty

Unknown: 4:46

much you can use the strategies for that relief in the moment but also practicing them increases how much they work kind of like a sport, right? You might build a basket but you make more baskets, the more you practice. So the more you Practice those strategies to better than work in the moment.

Michael Leopold: 5:02

The idea of CBT is it's a few things. There's mindfulness, there's, there's some breathing exercises for relaxation. But the core of it is around developing like a competing response, something that you do, when you feel that urge to take that pre monetary urge. And in a way, over time can can get rid of that urge to do the tech, you're doing some other behavior that's more socially acceptable or less painful or embarrassing, or looks more natural, something like that. And you do that behavior instead of the tech. And it's easier said than done and takes months to really get good at it. But that's kind of the idea of it is developing this competing response that satisfies the urge to tick without doing the ticket self. And I know another big emphasis in the work that Liam is doing is around building emotional intelligence, being able to understand his own emotions, how he's feeling, we'd love to hear if you can speak to that piece of it, and how you've seen him grow and develop in emotional intelligence as working through his work with his therapist.

Unknown: 6:01

It's definitely been quite a journey, Liam's always been able to express things in a different way other than, like, verbally, like, he would do something funny and kind of shrug off or like, push off whatever this feeling was. So it's kind of like he was deflecting it, and pushing it away, as it is not happening. And the more that would happen, you know, then we would be like, well, I want you to tell me what's going on, because I want to be able to help you as your mom, you know, and if you can't tell me, I don't know how to help you. So when we go to our therapist, and the work we do at home is constantly, how was your day, tell me what you're feeling. And it's okay, if you're angry, it's okay, if you're frustrated, or sad or mad, or you got this, this horrible feeling in your head, that you're thinking of this horrible thought, you know, because it's natural, we all go through those periods. And to hold it in does no good. It's kind of like when you hold in baking soda and vinegar, and then it explodes. You know, and we tried to tell him as often as we can, it's okay to share your feelings, we try to be examples and share our feelings, no matter if it's sad or mad or, or whatnot. But that way, we can be that example for him to release those emotions. And it's taken, it's taken over a year for him to be able to progress where he feels more comfortable and confident telling us these things. But as we see that skill grow, we do see certain triggers get lower. He's definitely putting in the work and the effort, and we're seeing it, his school sees it, his therapists see it, we constantly ask for advice ourselves, because we'll get to a point where it's like, okay, he's grown. And he's showing this effort. And he's telling us our feelings when we hit a roadblock. How can we overcome this roadblock? What are what are some alternative words that we can use for him to express his feelings with us, you know, and also giving him the space and not pressuring him as his mom as much as I want to know, giving him that space and say, Okay, go take the time for yourself, reset, think about it. And then when you're ready, come back and tell me and I will listen, I'm all ears. So I think, you know, those learning curves from us and with him, we're constantly working together to to see him grow. And we do you know, I think, you know, when it comes to the talk therapy, I remember the beginning, the whole idea was, let's make sure we're all on the same page, and every one understands their role. And I think that once that happened, we saw an amazing difference, because he understood that his role was to be the child and our role was to be the adult, but that he also had to be able to speak about his feelings and his experience to receive any help. Being an only child scenario, he doesn't see other children struggle at home, and Anna's parents, we don't need to put our problems on him. But it's important to share our struggles that are age appropriate. So when I have a tough conversation with him, it's important for me to show him that I have the words to tell him how he made me feel. And that's okay, so that he can feel comfortable saying that back. And that's really the biggest part. Because we don't have to, we don't know what tics are like and what for monetary urges feel like all we can do is read. So he has to be the expert. You have the ones who tell us and you have to know that you are the expert. And we can support what you're going through. But you have to keep working to find the right words to express what's going on.

Michael Leopold: 9:42

And for context here. Liam is in fourth grade, right? Yeah, so very young, and we don't teach this stuff in school emotional intelligence. I think this is such a huge asset for him to have and for kids in general to understand how to how to recognize and also articulate your emotions and motional intelligence is one of the greatest skills that unfortunately, we often neglect to teach kids. There's been research on this showing that having high EQ is a better predictor of positive life outcomes than grades in school or your IQ or your SATs score. So to teach this to a kid and have them working on it at such a young age is is incredible. I keep thinking that when Liam is an adult, he's just going to be at such an advantage for having developed that that muscle at a young age because it really is a muscle, like emotional intelligence is something that anyone can learn. It just takes that commitment and practice and it's a different way of thinking. I want to talk about how you handle that the the frustrating, tough days days when Liam's tics are bad, he's getting stressed out about doing homework. Growing up, I remember working with my parents on my schoolwork. And as someone with Ts and ADHD, it could get very frustrating, especially math class, math was always a struggle for me. My mom would sometimes be explaining a concept to me, and we both ended up getting very frustrated. I was upset that I wasn't grasping the material, you know, as fast as I wanted to. My tics were flaring. I was getting angry. She was getting angry. And then my mom would say something like, Oh, Michael, I need to go get some water or I need to go use the restroom. I'll be back. And when I learned years later, she told me that she was doing that to give me time to calm down. And also to give herself that moment to breathe and relax and regain her focus. I'd love to hear if if you echo that or how you handle these these particularly tough, frustrating days.

Unknown: 11:29

Absolutely. You know that homework, in particular is one of the biggest triggers trilliums. Because anxiety just goes through the roof. The thought of homework at home. Yes, anywhere else, it's okay. But at home, it's not Yeah, his anxiety just goes through the roof, the thought of the word. It's just, it's crazy. And we went through I mean, my first grade, second grade, and even last year in third grade where it was, why are we doing four hours of homework, this is ridiculous. Like it should take 30 minutes, maybe an hour, it should not take four hours, we shouldn't be struggling this much. And he grasped the concept. But to sit down and focus into put what he knew in his mind on paper was just such a struggle. Kind of like if you asked him to read, he can read it in his head. And he knows what the story is about, ask them to read it out loud. And his tics would flare up. And we had no idea what was even going on at that point. But we started seeing these things. And of course, you know, we get frustrated. And then we would kind of fuss and then we started to pick up on patterns. Like if we plus, it's just making it worse. Why is it making it worse? You know, nothing's get corrected. It's actually just we're not getting anywhere. So let's take a break. Let's reevaluate how to handle this situation. And we just trial and error tried multiple different things, I would work on some things some days like math or reading or spelling. And then if I had enough, Rena would come in, and she would work with him. Or sometimes we would tag team in the same day. We've tried every combination. One of my sisters who's in education department down here come in and help with like, ela, which is English, English Language Arts. And you know, because it got to a certain point where for me, I just couldn't help anymore. I was like, This is not my subject. We would see his tics flare up so much that sometimes yes, certain noises, certain things he did were. They were they were a bit much. And for us, we were like, Okay, we can't let him see us get super frustrated with this and then make him feel like it's not okay that he can't let us take us out. So we would take breaks and we would do the same thing your mom would do. I'm going outside for a moment. I'll be back. I'm going up. What are the flowers? I'm going feed the cats outside. Why don't you go take a break to why don't you go run in the yard and have that moment. You know, do some grounding, take your shoes off, go build with your Legos, go draw picture, whatever he needed to do just you go decompress yourself. And the more we we tried new things, we figured out hey, this is working. And up as we as parents criticized him or tried to correct him so much on things he was doing wrong or not picking up fast enough. We're like, we just need to let them learn at his pace. And let's see where that takes. And then once we realized if we just let him learn at his pace, he can do this. We will see those triggers go down now with school in general is started to progress more into the classroom. It particularly last year was very rough. It didn't matter what subject it was. It could be his favorite subject. It could be PE the teachers were seeing it and we would relay the messages of like, Hey, if you try this, it may help. If he relaxes, his tics are going to come out. If you give him a fidget cue or a fidget spinner or something he can play with these stretchy bands that you put on your your chairs where he can wiggle. He's gonna get he'll be alright. Some days, we both had to walk out. Yeah, yeah, some days they work some days they don't work may work for a couple of months and then the next couple of weeks they don't work. I think there's definitely a lifestyle before C bid and after C bid. But you know, our journey got really tough in January where we had every day was a really bad thing. And we were like, it couldn't be worse. And then tomorrow it was. And I think during that time, when we've really had no idea what was causing all of this, we tried to keep calm and find little things out words and said, Okay, this work this time, it might work next time, and it might not. But we need to collect our bag of tricks, so that on the bad days, we could throw out all our tricks. And if we were all under tricks, and nothing work, well, let's just go let's go cry all sides together.

Michael Leopold: 15:59

Yeah, you hit the nail on the head there. I mean, it is a trial and error approach. And it is I think, I've never raised a kid with Tourette but having it myself and seeing what my parents did and other families. Yeah, you collect a lot of tools in the toolbox and use them as you need to. And then it changes. Yeah, a month later, you know, a few months later, there's a different class he's taking that has different struggles and, or you change medication or whatever happens. And it's like you're almost back at square one changes,

Unknown: 16:25

the weather change. Yep, it's exciting. There's

Michael Leopold: 16:28

a break coming up in school, summer vacation, or Yeah, or an exam. Or it's

Unknown: 16:33

funny that you say, you know, excited because he loves math, and he'd be so excited to come home and do some math homework. We're like, Oh, you're excited, okay, let's run with it. Like, we're gonna have a good day. Right? Right, in turn, would trigger his tics to come out in what's that would happen, you know, the anxiety of I can't finish in time, I can't do what I want to do that something that I like to do, you know, so we would have those times as well. I mean, it's a it's a roller coaster some days, but we just got to try to stay positive and all those little tricks out. It's true. I think that when it comes to living a healthy life, minimizing stress is important. And and on a day where the tics are bad, doing the things that are making them worse is not helpful to anybody in the situation, remembering that none of the tasks that we need to do are more important than then that stressful experience. You know, the laundry can wait, the seller can wait the homework and wait, the bath can wait. The conversation can wait, the cleaning can wait, everything can wait till until this situation can diffuse. And once we were able to collectively do that, as a family and know that, hey, we're all here, however long this lasts, you know, and let's just let's just try to keep this as chill as we can. And we do it together, putting our health and mental health and wellness and that that diminished stress scenario as a top priority. It creates the environment for us to work on all of the tools and skills and improve our emotional intelligence throughout all of this.

Michael Leopold: 18:07

I know some families have a rule, like when the kid gets home from school, there's no play no TV or anything until homeworks done. If you tried anything like that. And I imagine it is like this, it doesn't work well, like you have to kind of be flexible. And what are your thoughts on that?

Unknown: 18:24

So we've tried me I've done for whatever works like growing up, when I got home from school, I got a break, I got a snack, I got to go play with my friends out in the neighborhood. Then by certain time I came home, did homework, eight, take a bath and call it a night, right? So my idea was, hey, we're gonna kind of do something like that, too. When Liam gets to that age. Well, we did for a little while, and it worked. And then once we realized he was ticking and what they weren't and becoming more familiar with it. We're like, well, let's try this. We pick him up from school, let's just go straight to homework, get it done, and then you have the rest of the night to yourself. And it worked for a little while. And then it didn't work. So we're like, Okay, well, let's try the opposite way. Vicki out from school, you have a break and then you do some homework. We eat and then you have the rest of the night to yourself. And that worked for a little while and then it didn't, you know, we have our own challenges. And then so we're like, Okay, what about aftercare in school, you've got, you know, two and a half hours in aftercare where you can play with all your friends, you can play on the playground, you can try to do some homework, if you want, you got two teachers to help you. So you got you can do both options if you want. Then that worked for a little while and then it didn't. So it's just you know, we took it day by day, whatever worked, that's what we did, and to make the best out of it. And now you know, we've been incorporating our new tools into our day and it's also part of the school so we talk about our highs and lows and and and it gets a temperature on the day you know when He walks out of school to the vehicle, we watch him. And we watch for the leaky brakes. Do we think he practiced his strategies today? Is he smiling is he talkative checking out that body language, seeing how he greets us in the afternoon, talking about your highs and lows, that little 510 minute conversation tells us everything we need to know without asking the questions directly. And that pretty much sets the tone for how we handle getting home. Sometimes, a good day means we're going to go outside and play and sometimes a bad day means we're going to go outside and play. So it's not, it's not so much that that determines what we do. But how we approach the transition from the end of the work slash school day to the home time, because it's really the transitions that trigger him the most. Once he's in a place he's good now change that. And being a child and not choosing when you leave and how you leave, you know, that becomes uncomfortable and causes this transitional anxiety that that can just tip the scales at any moment. Yeah, feeling

Michael Leopold: 21:01

like you're not in control. And now you have to switch and do a different subject or do some other activity. That's a lie. That was a lot for me growing up to transitioning between tasks or subjects in school. I want to talk about confidence and self worth. Liam was in fourth grade. Now he was diagnosed with a tic disorder in 2021. And then that got the tried diagnosis earlier this year. With Tourette self esteem can be a challenge, we often feel that we're different. We stand out because of our texts. They're embarrassing and can look and look awkward to other people issues with bullying, social exclusion. I'm curious to hear about how you as parents foster an environment where Liam is supported and affirmed and able to build his self confidence.

Unknown: 21:42

Well, I know I was bullied as a child for being dark skinned in a school of light skinned people and having old parents that adopted me. So I've taught him as long as I've been around about bullies, and how it's not a good thing and how the times that I chose to be a bully. So we at least identified that. And surprisingly, rarely did he ever come home with that story of bullying. But what he did have was his friends, he would say all the time. I'm just so sad. And I don't know why. And it would come out of nowhere. It could be we just had the most fun, we were laughing and cutting up. And three seconds later, he's frowning. And I'm just so sad. And I don't know why. And we wondered about this for years, and now pretty much put the nail on the head that the knowledge of suppressing the ticks making side. So we've really tried to frame the terminology we use and the way we talk about it as not something with a negative connotation. But it's just something that's a little bit different for you kind of like somebody who has to check their blood sugar doesn't change who they are, they just have to do that. I can't chew gum because I have TMJ disorder, I just can't do go. It's not a big deal. Just a little different. And I told him I said, you know, I'll, I will stop and have a breakdance break with you anytime. So we'll like, suddenly, you know, and, you know, calling it something that he's just a little bit different, or that it's a superpower and also tried to take the skills you use and Ts and explain that it's not just for people with TLS. Here's how someone without TLS uses that same strategy. So you're not alone in this strategy. All humans use it. You just have to learn a little bit younger. It's a life skill. Yeah, totally. And I think that's the big thing is what skill can we teach them now that that will last forever, and it will just help his childhood and that much more enjoyable? Yeah, I

Michael Leopold: 23:43

love that. Just your your whole attitude and outlook on this as being a difference, rather than like a diagnosis or clinical you know, problem is beautiful. The disability, the disc part just makes it oh, there's something wrong with me, you know, and we internalize that at a young age. So really applaud you on efforts to to normalize this and yeah, like you have this this thing it can it can be a superpower. It can also be a challenge at times. And you have to be aware of how it affects you and others and take charge of it. That's amazing for someone so young to be learning. Has he been able to find a friend group get that social support in school? Does he feel connected with

Unknown: 24:24

the school we're at now? Yes, definitely. You know, we had originally started him in public school and that was I was just nuts. We had ups and downs. Yeah. When we had our worst down period with that we switched to a private school and loved it absolutely loved it. We got to walk to school every day and enjoy those moments. It's a small private schools, everybody knew everybody. And it was like a big family community over there and had a lot of support from the principal and the teachers until third grade, which I'm not gonna say that it was bad. but they were not fully aware of what his challenges were now we click with, yeah, handle it, we quickly updated them. And as we saw, this was like the worst year so far, they just weren't equipped to handle it, they wanted to, but they just did not have the resources, or the staff being at their private school and are required to have that. So we're like, Okay, here's our hard decision, what do we do? Do we homeschool? And, you know, find these alternatives to keep them involved socially, and keep friends and things like that? Or do we find a homeschool based program, where it's a group of kids that get together throughout the day? Or do we put them back in public school, and for me, it was like a no go with the public school just because I knew he would not have, he would not be put me on here. I'm thinking of how the public school and private school system creates a space for you to fit in. And if you don't learn that way, at their speed at their pace, you don't feel like a success. And we found a school that creates a space around him to learn the way that he learns. And I do that for all the students there. And, and it's a private school, but everyone there is excited about helping children who are a little bit different, still gain the skills to be as successful part of society and go to college, if they choose to. That environment in itself is wonderful. Liam doesn't have to fit the fit his round peg into a square hole, because it just doesn't fit that school told us today. We don't even remember what our school was like before Liam,

Michael Leopold: 26:49

does he disclose his tics to classmates? And how does he feel about that, like his comfort and disclosure?

Unknown: 26:55

Usually, you'll hear him say, that's just my tics. And that's kind of how he's always talked about it. There are times that he's more proud to explain and other times where he's just nonchalant. You know, that's just the work we did in the beginning was was making it normal and giving him the phrases to say, in those moments, we want those answers to just flow and let it be normal. And I think that's kind of how how we make decisions on how to approach things. How do we normalize this so that it looks normal sounds normal to other people, but also feels normal to us?

Michael Leopold: 27:27

What advice do you have for parents who just found out that their kid has TSA, they just got the diagnosis? They're feeling a little nervous about it, not sure what it means? What would you say to them,

Unknown: 27:39

I would say the fear comes from the unknown. And when you first get the diagnosis, there's something you think it means in your mind, and you know that what's in your mind is not right, because that's not what you're seeing in front of you. That unknown feels very scary for a lot of people when researching medical things that is equally as scary or if not more scary. And what I find with with TLS, is there's so much information and it's a lot to digest, take that at your own pace, learning it faster, doesn't mean that it gets easier faster, because you could read every piece of information tonight, and you're only going to retain 1% tomorrow. But if you do 1% for 100 days, you'll retain a lot more. So just take it bit by bit. approach it as learning a different approach to mental health or cooking a different type of cuisine. It's all skills and tools we already know and use. We're just using them a little bit different. Little bit different mixture a little bit sooner. Yeah, I would agree. You know, the more you educate yourself and take it at your own pace, because it is quite a lot. And we've been doing this since he was diagnosed with his tic disorder, you know? Yeah. And my first thought was, there's no way he's got to Yes, No way, like he's gonna outgrow this, right. And the other half of me was like, Well, what have you done? My advice to a parent would be don't be afraid to start wherever you need to start. You may be in the wrong spot. Or it may not be something that 100% pertains to you or your child. But don't be afraid to learn it. Because when that door opens, then another door opens and another door opens, right? can also get a good support system. Build a good support system with school, your community if you can, friends, family, and your partner, the person that you're with, because there's going to be days where once had more than they can take and the other one has to pick that up, right? And then there's going to be days where you're both just at your wit's end with it, but you both have to be able to bounce back and say, okay, look, I got this, you know, so that support system is definitely a big help and not only for you that child, but for you as well, because you can go invent and create your own safe space. It

Michael Leopold: 30:07

is a team effort. I'm curious, given that you live in Louisiana and what your experience has been like finding those professionals, the physicians, the therapists, what advice do you have to other folks that may be, you know, not living near a major city? How do they navigate this? And what tips have you learned?

Unknown: 30:25

Well, here's here's a healthcare pro tip. All right, this is what we all do in health care. You ask your co worker, who they would see I called a pediatric nurse friend of mine said, This is what's going on? Who would you send your kid to? If you were in my shoes? And ask a couple people that question, we got our GP and one of the GPC suggested is our GP, who also happens to have tics had no idea. Wow.

Michael Leopold: 30:50

It is more common than people realize. Yeah, I mean, a minimum of 20% of kids have sometimes while growing up, and sometimes it doesn't go away. One thing I hear a concern from parents is around medical insurance coverage for things like C bet. For a family that is looking to get something like CBT covered by medical insurance. What advice do you have for that

Unknown: 31:11

when it comes to, to healthcare and insurance and the amount that that it charges, there's a whole level of services and tiers. So seeing a physician is a higher tier and seeing a nurse practitioner or physician's assistant than seeing a nurse. So when it comes to a psychologist and an occupational therapist, you have that same hierarchy, the psychologist is the physician and the occupational therapist is is the therapist appear lower. What happens is the services in general you charge less and reimburse less. And we know insurance companies, the less they pay, the more they're willing to sign up. So that's kind of how it works. It's a less intense therapy. And it can be provided by someone that has the skills and knowledge to perform it. And a psychologist observes the body language and the language in the whole person, just like an occupational therapist does, too. So it's really neat, where those two branches can come together to create the same outcome, but it'd be more affordable and accessible. The most important thing we learned about CBT and not being covered, and successful, you know, is important. And there were options about seafood being available online and, and all these options. And is that the right thing, and I struggled with that thought for a while it can work, virtually, what that's going to take is a lot of being able to describe the feelings, you know that verbalizing of what are you feeling, were you feeling it, and being able to demonstrate your full body language to that person, but then also that person having enough CBT experience to pick up on those things, and work with you through it, I find that through that you also get some skills that you can repeat. So to get a new strategy, you don't have to go back to sleep it. So once you learn how to do it with the tics you have, you can probably continue to keep it up if you're able to gain the skill. So there is this, this thing of you can't just go to one CBT session, it's eight sessions. And I'm sure that's scary to a lot of people. But at the end of those six to eight sessions, you have the skills and now you can take it and run with it, ot will most likely be covered. If your insurance covers additional therapies. For

Michael Leopold: 33:33

sure. That's wonderful. That's wonderful. Yeah, and a lot of people have insurance plans that don't cover mental health or it's very limited and stuff. So this can be a challenge for families to find someone that is a good and experienced in TLS and see bid for it and be also covered by their their insurance plans. Any other things that come to mind that you really want people to know or anything you've learned in this experience that you want people to take away.

Unknown: 33:59

I think from a parenting perspective, the parts of our mind that we dig into when we try to parent comes from them natural instinct and some experience of our childhood in some way we think I'm not going to be like our parents, I'm going to be like somebody else. But then when you're hit with something that you have zero experience in, it just really throws throws a monkey wrench in the whole thing. And you're just trying to grab an angle. It's scary because it's uncomfortable. But you find it. I don't know when I found it, but you feel it. You're like, oh, wait, I found it like, you realize it after the fact. And it's a matter of taking it one day at a time and taking it one step at a time and never giving up on learning more. Right? Because the moment you stop trying to learn more, stop trying new things or stop trying to hold yourself accountable. That's the time where things become uncomfortable and scary. Absolutely. I wake up every day and do it and then it makes every day the best day You can be Yeah, you can be comfortable with the uncomfortable. That

Michael Leopold: 35:04

is the nature of the beast here. Yeah, being comfortable with ambiguity with having to do trial and error with all these approaches with you think you found something that works and then a year later it stops working. It is an ongoing journey and continues into adulthood as well. But hopefully by that point, he's developed the skills to, you know, through seedbed and therapy to tackle a lot of that on his own. Well, that's been really great. I'm so happy I got to have you on the podcast. Thank you again for being a part of this. Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment