Connecting the Dots Between Occupational Therapy and Tourette Syndrome

In this episode, I speak with occupational therapists Shannon Floyd and Jan Rowe about their expertise helping both children and adults with Tourette Syndrome. We have an enlightening discussion around how occupational therapy can empower those with tics and Tourette's to live full, uninhibited lives.

Shannon and Jan outline the evolution of using a more cognitive behavioral approach compared to traditional sensory techniques. We also explore the difference between organic and functional tics, managing sensory issues like clothing textures, and critical emotional regulation skills.

If you or a loved one experiences challenges from TS that hinder engagement in meaningful occupations, this episode will expand your understanding of how OT can help.

Starting in 2024, there will be an "OT Compact Agreement" where about 36 states are collaborating and people who live in those can find an OT who is part of the compact and work with them. This can help people in rural communities find therapists across state lines, who are knowledgeable in TS and CBIT

Timeline Highlights:
[01:05] The shift from sensory strategies to CBT for treating tics.
[03:01] Heightened internal awareness in TS patients.
[04:03] Learning competing responses and emotional regulation young.
[13:44] Clothing accommodations for sensory issues.
[16:07] Distinguishing functional tics from organic TS.
[18:55] High treatment success rate for functional tics.
[22:48] Recognizing personal warning signs of frustration.
[25:21] OT meets needs beyond talk therapy.
[29:40] Allowing telehealth across state lines with license portability.
[32:06] Finding a TS-experienced OT in your area.

Links & Resources:
•Tourette Association of America Therapist Directory: https://tourette.org/resources/find-a-doctor/
•Learn about OT Compact for telehealth: https://otcompact.org/about/
•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

Shannon: 0:00

I think our biggest thing is we just want to teach people to live life, despite their symptoms. We don't want to live like in spite of those things, because that's what's going to make us go more into anxiety and depression and all that we really hope to empower people. Give them that independence, decrease the anxiety about their symptoms, educate them, and just really give them the tools to live a successful life.

Jan: 0:22

Well said.

Michael Leopold: 0:24

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 TMS community. Welcome to this episode of the apptech. I'm here today with Shannon Floyd and Jan row with occupational therapist with an interest in Tourette syndrome. And I want to start by kicking things off with a discussion broadly about OT and what it is and how it can help people with Tourette Syndrome. Would you each like to share a little bit about that in the work that you do with Tourette patients?

Jan: 1:06

Sure. Hi, Michael. Thank you for having us. This is a great opportunity for Shannon and I to talk about ot in the world of tic disorders and Tourette. I think before 2010 Most occupational therapist would have said that they used a sensory approach when working with people who had tics and Tourette and certainly there was nothing wrong with that it just didn't work very well. And it was very slow progress, I would say at best if there was any progress at all. But what we know now is that C bet obviously, is the frontline defense for in terms of treatment for people with tics and Tourette if they want to learn how to manage their tics and the coexisting conditions that often go with that. And so occupational therapists are now being trained in C bet, which is an excellent fit for us as occupational therapists, because it's just so in our wheelhouse. And in terms of the contextual elements that go along with treating people with tics and Tourette teaching people how to become aware of triggers those settings where either they take less and noticing that and trying to replicate that, or in those settings where they're ticking more, or maybe their anxiety is greater, which then of course triggers their tics. So you know, OTs are a great discipline to look at in terms of someone to help work with you either regarding the tics themselves, or the comorbid conditions that often go with it.

Shannon: 2:32

And I think the special thing that OTS bring to the table is we look at activities of daily living, right, just occupational therapists were trained for that. And so in the TIC disorder Tourette Syndrome world, what we're looking at is how do your current symptoms impact your ability to be independent? A big one that we look at is sleep hygiene, because we know like Jan said, the triggers they impact these tics symptoms. We're trying to not only address the tics, but figure out what is it that's making them

Michael Leopold: 3:01

worse. And so that would be understanding things like like what's causing those pre monetary urges. Like when I have a bout of tics, you know, am I frustrated? I'm stressed, my muscles often tense it my posture gets worse before I check. Is it a part of understanding those sorts of symptoms that happened before the tech? That's

Shannon: 3:19

more of in the CBT realm, but with the OT realm, we're just trying to see, is it a certain teacher for a young kid? Is it a certain teacher at school? Is it a certain time of the day, especially in adulthood? Cassie, we all like our coffee in the morning and I've seen people who are like when I have caffeine or is it more than two cups of caffeine might take symptoms get worse. It can be environmentally triggered, it definitely can be triggered by that anxiety and some of those underlying conditions as well. And then when you bridge over into CBT, which is comprehensive behavioral intervention for tics, that's where if he's really do well with the body awareness and motor planning, what are you feeling prior to a tick a curry and then trading them kind of how to manage that a little better?

Michael Leopold: 4:03

I see a and you can work with both children and adults with checks, right? Absolutely.

Shannon: 4:08

Even kids as young as five I know Dan has talked about people with tic disorder and Tourette Syndrome. They're interoceptive awareness, their internal awareness is heightened. It's IOC. It sounds like there's a spotlight internally, and they're hyper aware sometimes the things going on. But sometimes they feel those things so much every day that they just are used to it. So then when we go to try to train them for dealing with different tics, they're not associating, oh, that's the urge I feel prior to this tip, so we have to weed some of that out for them.

Michael Leopold: 4:39

I imagine it's incredibly empowering to develop that skill set at such a young age five years old, and you're already learning about the pre monetary urges before your tics and emotional regulation, which we'll talk about next. I need to teach young children about emotional intelligence. You're preparing them for a life of being able to Did you I mean so many different things because they mastered that at such a young age. I think that's incredible. We

Jan: 5:04

have kids that when they come in to see us, they're so down on themselves about their tics, they feel like they're the only person in the world that has tics. They don't know anybody else that has tics. They're oftentimes making decisions to opt out of activities. I don't want to play baseball anymore. I don't want to go to this place anymore. And then they learn some of these tools from seabed, I

Michael Leopold: 5:24

imagine that does wonders for self esteem and socializing, and just yeah, the self empowerment there. I want to hear a little bit more about both of your backgrounds and what got you interested in this.

Shannon: 5:35

I can start by saying, Jan is the reason I'm doing what I'm doing. Just a quick story. I was working in Louisiana at the time as an occupational therapist in a private outpatient sensory based setting. Like she said, we tried using sensory strategies, had a kiddo come in with significant tics that took him out of school to come out of all of his activities, and I knew nothing about CBT. At that time, I looked on the Tourette association of Americans website, found Dr. Brown reached out to her personally, I'm like, I need you to help me. This kid had said, I'm going to conquer this. I don't know how I'm gonna help you. And I don't know how we're gonna figure it out. That's how it started for me. And Dr. Rao was amazing. We did a little session together. In what three sessions, Jan, we were able to get that kid. He had such a loud vocal tic that everybody could hear him coming from like a mile away. And by session three, everyone was like, Wow, is he here is he actually in the building? It made a significant impact. And right there, I was hooked, because I've always been an OT, who does sensory processing. But this just the effects that mean it just took hold so much quicker. So that's my journey into where are you now? But yeah, it's all because of Jane.

Michael Leopold: 6:52

That's wonderful. And I think, Shannon for sharing that. I appreciate it. Jen, I'd love to hear your story. Yeah, so

Jan: 6:58

I worked. I still work with movement disorders neurologist here at Children's of Alabama. I worked with him in his adult clinic for Huntington's disorder for I don't know, two decades. It was kind of comical because everybody that worked in the adult clinic. We were all pediatric therapists, including him as a pediatric neurologist. But just through some bureaucracy, that clinic got moved to adult side of sort of the health center. And so we didn't have a clinic to work with anymore. And about six months after that happened. He called me one day and said, hey, the Tourette Association and has this. This group looking at this new behavioral therapy for kids and adults with tics and Tourette. I probably got 200 kids on my caseload with tics, why don't you get certified, and we'll start a clinic. And that was in like late 2009. We had the Tourette Association come down and train us was actually the first time they trained OTs and I was one of two OTS that got trained in that session. We started our clinic three months later January of 2010, at UAB, University of Alabama, Birmingham, and we've been going strong ever since. So I was actually the first ot to start a CBT clinic that was developed and implemented by an occupational therapist, and have since been involved in the training of other OTS have just recently submitted the OTC bid manual to the Tourette association for publication. I myself have Tourette My mother has Tourette My grandmother had to rent my mom was one of six kids and three of her siblings had or have Tourette. But it's funny because none of that really entered into my brain until I was probably three years in. I mean, I immediately started using competing responses for my own tics that were, you know, still noticeable, especially when I would get excited or stressed or presenting or that kind of thing. But it was really not until about three years in that I really realized the magnitude of Tourette history in my own family. And then on my dad's side, just like OCD to the max and I myself have OCD as well. So it's kind of come full circle for me.

Michael Leopold: 9:02

Oh, that's that's incredible to hear. Thank you for sharing that a lot of our listeners are adults with TS or allies to the community. And I can so clearly see the benefit of OT for children. I can also see it for adults. But I'm wondering it for our listeners sake if we can talk a little bit about like SEL o CI for an adult with Tourette. Why should they go and see you? How can you make their life better? That's what I would love to hear. It doesn't

Jan: 9:28

matter how old you are, if so, the term occupational therapy occupational is a little misleading. And I think as a profession, we haven't always done a great job in terms of explaining, but occupations are basically anything you do in your day that have meaning and purpose to you. So whether that's work or playing your guitar or taking care of your children or being the best at your job or you know, being the best student that you can be it doesn't matter what it is that you do is your occupation. If there's something in your Life that's getting in the way of your performance and your engagement and that occupation, then you need an occupational therapist that's kind of cut to the chase right there. So if it's tics, for instance, that are impairing your ability to engage in the various occupations that you find just to be important in your life and that you're passionate about, then an occupational therapist can help you with that. A lot of people who have tics and Tourette have difficulty with executive functioning skills, they have difficulty with sensory processing. So all of the things that are kind of in an OTS wheelhouse are still beneficial to you, whether you're an adult or a child, married, single doesn't matter anything about your status, if there are things getting in the way of you doing what you want to do, and being able to do it to the best of your ability, then an OT could be helpful to you. Well

Michael Leopold: 10:50

put shed any thoughts you'd add on to that? Jan? Got it. Oh, that was great. That was very thorough. Yeah,

Shannon: 10:56

she's right. I mean, it really does. It's just, it impacts you differently throughout life. And maybe for later time, but as you get older driving, or holding a job and retrain people on accommodations, and rights that they can access as well, because sometimes there is a little discrimination in the workplace, we really bring them to that Trade Association of America, we're like, Okay, here's the resources, here's the support and get them plugged in that way too. And then a child, you're talking about the educational rights and all of this for people with tics and Tourette in the school system. And Jana and I got lots of stories to share about that kind of stuff. But we really are a great advocate as well. So not only being the occupational therapist, and a little bit of figuring out, there's a tick iceberg that a lot of people will see when they first come to see bit or see a neurologist, it just shows that ticks are the tip of the iceberg. And there's a lot of underlying conditions that can impact symptoms. And so sometimes we're the person, the first person who's been able to take a look at all of those and say, Okay, your cheeks are the biggest factor right now. Your OCD or anxiety are things that need to be addressed first. So we're just looking at the iceberg saying, What's the most impactful sent them on your ability to engage in these activities of daily living,

Michael Leopold: 12:12

it makes so much sense, prioritize our stressors, and that changes, like you've alluded to changes through life. I mean, my OCD went into remission at some point in high school. ADHD has impacted me in different ways depending on the job and my manager and the work I'm doing, I find like different ways that impacts me, ticks still wax away, and even as an adult, so it is a constant adjustment and evolution or adapting to, I would love to dive into the iceberg idea that the model I think all of our listeners are familiar with that the sensory piece specifically, growing up I had some of this I grew up in a family of four, there are four of us kids, three of us have a TS diagnosis. But we're like the perfect kind of Punnett Square Tourette family because we each have different co occurring conditions and like, I'm more chicks, my the two siblings are more than CO occurring and their tics are more mild than mine. But my brother and I both had a lot of sensory issues. Neither of us wore jeans until while at least until high school, we just didn't like the fabric. We didn't like the feeling of it. My brother did not drink soda, the carbonation just bothered his throat. There were a number of things like this. And no, I don't think they got to the point where they were preventing us from engaging or enjoying major life experiences, the wearing jeans thing I mean, every American wears jeans like so I that was kind of like something by high school, I kind of made myself do that, and eventually gotten used to it now I'm fine with them. But I would love to share how you work with the sensory pieces, especially at how you help folks bring more comfort around some of this.

Shannon: 13:44

Yeah, that's been my career focus pretty much the entire time I've been an OT. And it's interesting how it's changed as I've worked with the TIC and Tourette world. So initially, I would just work with sensory processing issues. And so I had worked a lot on sensory diet, and mostly in kids, you know, what are they craving? How can we give them the input they're craving so they can feel more regulated. And it's interesting, as I dive into the the tick and trap world and those processing issues, it's almost like everybody's almost hyper responsive to everything. And so I find myself more coming up with accommodations, adaptations to things, you know, you talked about clothing, there's different clothing lines, like smart knit and those types of things that make clothing designed for people with sensory processing issues that don't like tags and their clothing or the way that socks feel on their feet. Yeah, yeah, you've got that right. Now that one is that misophonia piece of this. There's a lot of hypersensitivity to auditory input. And so especially in the adolescent world, they're very social. They go to concerts and movie theaters and all the things and just the noise level to be really insulting to their nervous system. And so we talk a lot on noise cancelling earbuds and things like that, and then teaching them to adapt. So maybe put both of those noise cancelling earbuds in your ear as you're walking into the venue to prepare yourself, then we teach coping and self regulation strategies when you're there to calm your nervous system down. As you feel more comfortable in that space, maybe take one of those earbuds out. And we're really good at it. Well, we call Cheney, we want to get you to where you can go and not have to use these adaptations. But we got to progressively get you there. Can we

Michael Leopold: 15:27

actually get allow ourselves to get sidetracked a little bit, I would love to talk about functional text with you, because that has been an issue that's coming up, especially during the pandemic and social media. We've seen this massive rise in especially teenage girls that are presenting with these take like symptoms. It's so big, we don't know exactly what all is going on. Some could be real Tourette cases, others could be another tic disorder, it could be a number of things going on. How do these patients and I don't want to generalize but but the patients that come forward with with functional tics and that kind of symptom? How does the work you do with them differ from someone with like a pure Tourette's kind of diagnosis?

Jan: 16:07

That's a great question. And I think when we first started seeing the real upswing in functional ticks, early in the pandemic time, there were a lot of us that were reaching out to the threat world is kind of small, even, you know, across all of the country borders. It's a small world of specialists. And so we were all sort of reaching out to each other. And it's not like functional disorders were new. But this manifestation of functional tics, and the propensity in which we were seeing these functional tics was definitely new. And so I think in the beginning, I would say probably the first three months, I don't know that we in my institution, I don't know that we did such a great job to begin with, because it was a big learning curve. The numbers were incredibly huge. Just to give you an example, I mean, prior to COVID, and the pandemic, I would maybe see one or two functional kids in a year. And during that time, I was seeing upwards of 10 to 12 new kids in a week. That was the new once a week, in addition to kids that were coming back on a weekly basis. So I mean, the population it just absolutely exploded. I think within the first couple of months, we got pretty good at saying, Okay, we're going to kind of have an approach to this. And so the first thing that we need to do is make sure that people have the right name for what's happening, because they were coming in oftentimes with diagnosis of Tourette, mostly pediatricians, were actually diagnosing them with Tourette and then sending them to see that. So we were trying to explain to them that I'm not a physician, I can't diagnose. However, I can tell you that what I'm seeing and that if I had one of my neurologists here with with us, they would likely tell you that this is not Tourette. This is not organic tics, you know, this falls under that umbrella of functional tics. And so we started basically zooming in one of our neurologists with each new console, because I wanted them to hear from a neurologist, the diagnosis, the actual diagnosis, and then we did some education with that. And then we basically said three things, we think we can help you by doing see that although see bits, that's not what this seat is designed for. But we have seen some good success. But you've got to agree to a couple of things, you've got to agree to see a therapist to work on the underlying, you know, condition of anxiety, trauma, grief, whatever this is, you got to stay off the social media platforms and following people with tics and Tourette and you have to show up for these sessions. And if you're willing to do those things, then I'd love to like get you started and see that and see how much we can help. And once we took that approach by naming and what it was and doing the education, having them buy in with almost like a verbal contract. And then using see that we started seeing great results. I've

Michael Leopold: 18:55

heard that the prognosis for functional tics is great that like you can use therapy and kind of more or less get rid of it in most cases like make it go away. And that's another reason I think people kind of distinguish it from like the pure Tourette organic Tourette is because like it's like more or less durable, or a lot more treatable. It sounds like that's something you've seen as well. Interesting stuff, I might actually bring you guys back on to do a deeper dive into that I've been looking for some people that can speak to the functional tics side just because that is very new. And it's kind of Yeah, like you said being talked about in the trek world. Now, getting back to our topic that I do appreciate you entertaining, that kind of a side would love to dive into the emotional regulation piece I find as an adult I mean, now I run my own career coaching business, but when I was going into the office every day emotional regulation was something I think I could have benefited from working with some kind of therapists on and not that like there were big issues but just a stifled a lot of the challenges that I was going through working with a manager that I maybe we didn't get along well or I go bouncing from one task to another has always been difficult. And that can be some of my ADHD as well, making that transition. Talk a little bit about if you can about how you help clients with emotional regulation and your clinical practice.

Shannon: 20:13

I loved how you you said that I stapled things down, right? That was like that's a perfect segue into what we're going to talk about. We talked about a frustration beaker, we all have one, what fills yours? And so we do a really good job at like really diving in and like you said, is it a certain person at work? Is it the climate in your office? Sometimes, right, we respond to hot, cold temperatures, that sensory piece of things, too. But what are those things that are frustrating you throughout the day, and just having tics in general, you already wake up and your beakers already a little bit full. Because if there's OCD that goes along with that, maybe getting out of bed, you have to do that a certain way, and you have a ritual before you leave. And if it doesn't go the right way, you have to redo it. So now that's setting you behind, and you're getting to work late. And it's like, what are these factors that are impacting you altogether? But we take a look at what's going on? What is your frustration, beaker, what's filling it. And then we really take a look at what are those early warning signs that are telling you that you're about to get overwhelmed. We're not always keen on that we don't understand it all the time, we just kind of go from zero to 100. All of a sudden, we've got all these things happening. And so we really work on that body awareness, interoceptive awareness, what is my body doing when it's getting increasingly frustrated or stressed out? And then we use self regulation and coping skills to kind of help bring that down. I know how to use it there. Stress thermometer a lot for all ages, and we all need it. And so it's like, when you have a small amount of stress. What does that look like? When you have a moderate amount of stress? I always knew when I was young that my mom was really frustrated, because you would hear the cabinet start closing a little bit harder, right? So I was three years into it, especially kid, we all have a beaker, what does it look like for you? And then we start to identify, you know what, before lunch, your beakers getting really full, because we see these body signs. Maybe it's because you're hungry. Maybe it's because you're getting fatigued, let's incorporate a protein based snack, you know, so it helps us figure out what those triggers are even more. And if we can address those, it helps with that overall ability to self regulate. And a lot of times in school or workplace people are suppressing tics, symptoms. And one thing we know about tics that's like that volcano experiment, right? The baking soda and vinegar you suppress all day long, and you get home and it is just like an overflow of tics symptoms. So how can we help you better manage throughout your day, so you don't come home and have those big explosions?

Jan: 22:49

Assuming you've hit on all of the pieces of it. And I think one of the biggest deterrents to that is people just being willing to recognize just be aware of themselves and admit that, yeah, I'm frustrated, or Yeah, I'm feeling overwhelmed. Or, Yes, I'm hangry give me that Snickers bar, whatever it is. I mean, I'm 64 years old, my partner will look at me and say, I can tell in your eyes that you're hungry. And I know you're gonna tell me you're not hungry. You don't feel like you need to eat. But I'm telling you right now they'll get something. And sure enough, I could just stop myself for two seconds. Then I realized, yeah, she's right. I'll get something to eat and take a few seconds to just breathe or walk outside, stand on the porch, whatever, play with a dog and things are better. So I think admitting to ourselves that we do have that Baker that is about to explode, really paying attention to those warning signs, because these things don't usually happen without it. And it may not be obvious. So sometimes it's like putting puzzle pieces together that are laser cut pieces, and they're hard to discern. But you can usually find some kind of warning signal that's happening, then you act fine. What is it that I can do that unloads my beaker a bit, that gives me a little room from the top so I'm not quite as near to the top and ready to spill over. And sometimes it's just as simple as taking a break, taking 15 seconds even it doesn't have to be when you say breaks to adults, they oftentimes are like, I don't have time for a break, you have 15 seconds, you can breathe, you can look in another direction, you can walk to the end of the hallway, you can get out of your cubicle. I am such a news junkie. And right now in this world that we live in, I mean, there's so much going on on a daily basis. It's like I have to know but at some point, I also have to tell myself enough, because I know that my a lot of my body and mental stress and response is simply because what's going on in this world. There's just so much chaos or so much hatred and visceral response from people and it's some point you have to just allow yourself to unplug and to take that 15 seconds

Michael Leopold: 24:57

to have you it's relatable to a lot of people that work in an office setting or where they could have just go leave for the afternoon I found person I'd go for a walk. And being in a city like New York was nice because it is so walkable, I could just go for a 15 minute walk and come back or take a longer bathroom break restroom break, get some water or stuff like that. Talk to me a little bit about why someone might want to see an OT as opposed to an LCSW. Like a social worker.

Shannon: 25:21

I think because of all those factors that we talked about, we're not just looking at the mental health components, we are looking at underneath that iceberg. And I think they're really good at helping in different ways. But I think we all benefit the patient in different ways.

Jan: 25:35

And that's also a tiny piece. It's just like the iceberg it's looking at what do you need now. And then what therapist is going to help you achieve what you need. Now, you may need a multitude of things. But right now, it seems like the sensory issues, or the biggest, or the executive functioning issues are the biggest problem for you. So I think it does take that team, but we and oftentimes we all are working together. And then other times, it's a matter of let me see you for six or seven sessions, and then go to so and so. Or maybe you've done a year with a psychologist. And now you're coming for kind of about with ot to help with some of these other issues. So part of it is diagnostic, ly driven. And the other part is just in terms of, you know, timing and what your priorities are and what's causing you issues,

Michael Leopold: 26:22

I want to transition into a discussion around how our listeners can find people like you and work with you, especially if they live in rural communities, they're not in the south, getting your work be done remotely.

Shannon: 26:34

Yes, that's all I do. I do tell us a bit. It is very nice for people in rural areas and in the state of Tennessee. And there's a lot of people who will drive into Nashville, go to Vanderbilt, they've got some amazing neurologists there. And there's a limited number of OT and mental health professionals that are certified in CBT. So it's not always that they can find a provider that they can drive to. So I think during COVID, I was kind of doing tele seated prior to that, but during COVID, we all really learned what a benefit it could be. And it's just as effective as the in person sessions, what I love about it, I actually will have people, okay, take me to the grocery store, let's work on tick management while you're getting groceries and things like that. So I love it because I'm a little portable, where I couldn't be everywhere at every time. But it gives me some of that flexibility too.

Michael Leopold: 27:24

I love that actually, that you have, it's more immersive, you can actually see me in the situations where I would need this. And otherwise I'm in my session hours later with you, I'm trying to remember how I was feeling at the grocery store hours ago days, you can actually treat me in the moment, which is wonderful.

Jan: 27:39

During the pandemic, all of the restrictions and the licensure piece got relaxed across the states. So we were all able to see people across state lines via telehealth, which was awesome. And we were hoping that would be the one thing that stuck post COVID. It didn't. And so now we're back to for a lot of insurances. There are still some that we'll pay for it. But the good news, I think, is that through the American ot Association and our National Board of Certification, that there's a thing called ot compact, it starts next year in 2024. And it's actually an agreement state by state with the National Board of OTs, that will allow occupational therapists that have from states that have signed on to compact agreement to see people across state lines. So for instance, if you're in Virginia and on and Alabama and both states have signed the OT contract agreement, then I can see you I can be your treating therapist in Virginia, I want to say it's 36 states now have actually signed the agreement. And so this is becoming a real doable kind of thing for people. The other thing to note for your listeners as adults, if they have children, up to the age of 21, a third of the OT workforce is actually based in school systems. And so for their children, if they are having issues, or they have tics or OCD or some of those co morbid conditions themselves, their children can actually be served in schools from three years to 21 years by Occupational Therapist. And then outside of the school setting. Obviously, they can find us on the Tourette Association website, they can also just Google occupational therapist in their area. And then they'll get a pretty good list just from Google in terms of who has private practices who's associated with certain maybe outpatient hospitals, that kind of thing. And it's a bit more work just making cold calls. But yeah, obviously, the more specific they get in the Google search, the better fit they'll find in terms of an OTA I

Michael Leopold: 29:40

love that you brought up the OG compact agreement. And and for our listeners, you can read more about this at Oh chi compact.org/about. One of the things that's come up a few times in this session is around building it with a team around the patient. It could be an MD It could be an OT on the team. We've got maybe a social worker psychologist. If someone One is working through telehealth with an OT. What advice do you have for those patients to build that team and get that maybe a little bit of collaboration between the professionals that are working with them, especially and I always bring up the folks in rural areas because I grew up in Indiana. And this was a challenge for my family. How can we make that work? What are the best practices for the patient to take that initiative and and build that team?

Shannon: 30:21

I will say, that's something that OTS just kind of naturally do. We really do. I have an amazing team here in Nashville, Dr. Isaacs and his team at Vanderbilt are wonderful. They have a trek clinic there. He actually holds once a month meetings for professionals who work with people with tic disorder and Tourette syndrome, and you just collaborate and share ideas. So anytime I have a patient with tics and is referred from a certain neurologist, I'm always sending them in the report and communicating with them because that is so important to have both people on board, because if they're getting told by the neurologist is something different than what we as OTC, then it just it the progress isn't, is it's just not going to work as well. And so I do think we do that pretty naturally, especially with mental health professionals. I want them to know what we worked on where we've left off, and kind of what my concerns are, because like you said, when you leave a session, two days down the road three days down the road, you're Wait, what was it like? Does she want me to go see that provider, I always had them sign a release so that I can speak with the mental health provider. And then I can just express things we were working on that I found it difficult, or that they found it difficult to manage, and so that it just gives a clearer picture for that therapist as well. And the patients really appreciate that because they're trying to communicate with so many people, they forget they leave those meetings, like I shouldn't ask this question. We can be that middleman and go okay, let's reach out to your neurologist and see what they say makes a lot of sense. So yeah, how do

Michael Leopold: 31:53

patients or clients find someone that is an OT and has a background in Tourette syndrome, or can do CBT for track because not all OTS can do C but what tips do you have for listeners that may be trying to find someone like that

Jan: 32:06

the best points is going to be the Tourette Association, you can actually put in their occupational therapist and every ot that has been CBT certified should be on that list. The other thing is, if you live in an area where there's a Tourette Center of Excellence, then you can reach out to them. Many of the TS Centers of Excellence now employ OTS as part of their centers for different reasons. Some are doing the seabed, every Central is a little bit different. But it's kind of a good place to start. If you're not finding that person on the Tourette Association webpage.

Michael Leopold: 32:37

I'm gonna have to bring you guys back on, there's just so much we could discuss. I

Shannon: 32:40

think our biggest thing is we just want to teach people to live life, despite their symptom. We don't want to live like in spite of those things, because that's what's gonna make us go more into anxiety and depression and all of that we really hope to empower people, give them that independence, decrease the anxiety about their symptoms, educate them, and just really give them the tools to live a successful life.

Jan: 33:02

Well said.

Michael Leopold: 33:04

Thank you so much for this. This has been a we've we've covered so much. And I still only scratched the surface. Each of these could be so much deeper. So thank you both for your time. I'm so grateful to have you on the uptake. Thank

Jan: 33:15

you, Michael. This has been fun. Thank

Shannon: 33:16

you for having us.

Michael Leopold: 33:17

This has been the apptech brought to you by The New Jersey Center for Tourette Syndrome. Join us in two weeks for the next episode. 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