Empowering Parents: A New Approach to Supporting Children with Tics

0:04 Okay. Good evening and welcome. 0:05 Thank you so much for joining us for tonight’s webinar, Empowering Parents, a New Approach for Supporting Children with Ticks. 0:15 As you can see, I have Tourette’s myself. 0:17 This presentation is going to be by Ms. Morgan Iskowitz. 0:27 My name is Katie Delaney, and I am the Family and Medical Outreach Coordinator for the New Jersey Center for Tourette’s Syndrome and Associated Disorders. 0:37 I will be your facilitator for this evening. 0:40 Before I introduce our presenter, I want to go over some housekeeping notes. The audience is muted. 0:46 If you’re attending the live webinar, questions can be submitted in the questions box at the bottom of your screen. 0:52 During live Q &A, the audience will gain access to and mute themselves. 0:56 We will stop recording right before this. At the top of your screen, you’ll see a paperclip icon. 1:03 There you will a copy of the slides and upcoming events. At the bottom of your screen, you will see a react button. 1:09 To the right of it is an arrow. 1:11 When you click the arrow, you’ll see a few emojis appear such as a heart, a thumbs up, etc. 1:16 Throughout the webinar, feel free to use this feature to let a presenter know how she’s doing. Give me a thumbs up if that sounds good to you guys. 1:23 I just want to make sure you guys know where it’s at. Okay, beautiful. Thank you, thank you. 1:31 For those viewing the webinar you will not have access to these features. However, any questions you have for the presenter can be submitted through the chat box to the left of your screen. 1:40 The presenter will answer those questions on our webinar blog located on our website njcts.org under the programs tab. 1:47 This blog will be monitored until Tuesday, June 3rd. Any personal information will not be included in the post. 1:54 The New Jersey Center for Tourette Syndrome and Associated Disorders, its directors and employees, Assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on our site. 2:07 We do not endorse any recommendation or opinion made by any member or physician, nor do we advocate any treatment. 2:13 You are responsible for your own medical decisions. 2:17 Now it is my pleasure to introduce our speaker for this evening, Ms. Morgan Iskowitz. 2:21 Ms. 2:21 Iskowitz is a doctoral candidate in psychology at Rutgers University and a current intern at Mount Sinai’s Center for Learning and Development, where she conducts neuropsychological evaluations and provides therapy for individuals with ADHD, learning challenges, ticks, and related concerns. 2:44 She has been deeply involved with the Rutgers Tourette Syndrome Clinic as both a clinician and coordinator and is now focusing her dissertation on supporting parents of children with ticks through a program she developed called Mindful Monitoring. Ms. Iskowitz, the floor is all yours. 3:04 Thank you so much, Katie. I’m going to share my screen now. Just want to make sure. 3:10 Can you all see it. That’s good to me. Amazing. And I could see the thumbs up. 3:18 So I’m glad that that feature is working. Beautiful. Okay, awesome. So welcome, everyone. Good evening. 3:25 Thank you so much for joining me tonight, and for listening and hopefully engaging and participating. 3:32 And I hope that you all enjoy the talk and find it informative and helpful in whatever way and whatever you want to take from it. So first, I want to go over objectives. 3:47 So what I want you guys to get out of this talk is really to gain a better understanding of ticks, gain a better understanding of your role. 3:56 So whether you are a parent, so that’s going to be the focus of my research and of my proposed study that I’m going to be talking about. 4:04 But whether you’re a teacher, a caregiver, a peer, a friend, really anybody who knows somebody with tics or Tourette’s syndrome and how you could best support them and the importance of a parent group in supporting parents as well as children as then their children with Tourette’s which we’ll talk about. 4:26 So today we tonight we will talk about first tics and diagnoses in general, types of tics, the environment tech relationship, behavioral therapy, and then the parent support group that is my research and proposed study. 4:42 So what is the tech? 4:44 What is Tourette’s syndrome? 4:46 So we’re gonna start off by launching a poll that hopefully you guys are all gonna be able to participate in and answer. 4:58 Okay, perfect. 5:00 Let me see if I see that it’s up. 5:03 Yeah, here. 5:04 So when you think of Tourette syndrome, what is the first thing that comes to mind? 5:08 Now, again, there’s no right or wrong answers. 5:11 It’s really just to get an idea of where you guys are at in your knowledge for ticks and Tourette syndrome. 5:26 Give you guys a couple more seconds to answer. 5:38 Seems like a lot of you guys really have a good grasp on voluntary motor and vocal ticks, and we’ll talk about that some more. 5:45 And some of you voted, you know, blurting out obscene gestures. 5:48 And I think for a lot of people, that is something that they think of and the first thing that they think of because it might be the most obvious, it might be the most in your face. 5:58 And especially people that don’t really have a lot of experience with individuals with tics, at least before I learned a lot about tics, I kind of didn’t know much about them either. 6:07 And it wouldn’t have surprised me if that was one of the first things I thought of. 6:13 So, what is a tick? 6:15 A tick is a sudden, involuntary, brief, repetitive movement or vocalization that are not typical behaviors for the context in which they occur. 6:25 Now, it’s important to say for the context in which they occur because you can be putting your hair out of your face, you know, not realizing you’re doing it, but if it’s because your hair is in your face, then that is not outside of the context in which they occur. 6:41 You know, if you’re putting your hair out of your face when you don’t have hair or your hair is not in your face, then that’s outside of that context. 6:48 And they’re typically done in order to reduce an involuntary pre-monitory urge or itch or sensation or feeling, which we’ll talk a little bit more, which functions as the signal that a tick is about to occur. 7:04 So when someone has this feeling, sensation, itch, it’s saying, okay, a tick is coming, which is then reduced after you actually complete the tick, which we’ll talk about more. 7:17 So ticks vary, they change based on person and they also wax and wane and wax and wane means they come, they go, they change. 7:27 A tick can present in a certain way, it could be a blinking tick, it could go away for a certain amount of days, it could go away for a certain amount of months, it could come back, it could never come back, it could come back and it could be a blinking with like a lip smack. 7:43 You know, it could be, it could come back in any different way, which makes ticks really unpredictable and sometimes hard to manage because they change so much in nature. 7:52 And something else about ticks is there’s no exact cause or cure. 7:56 It’s thought and research has shown that it could be genetic and neuro biological in nature. 8:01 But for the purposes of the talk, we’re going to be focusing on a different aspect of ticks. 8:06 But I definitely urge you all to look, if that’s something that you are interested in, look more, do some more research on that. 8:18 So now, diagnosis of a tick disorder really depends on the presence of motor and or vocal ticks, the duration of the ticks, the age of onset of the ticks. 8:31 And it’s also a hierarchy based on diagnosis, which you’ll understand a little bit more once I explain. 8:39 So at the bottom of the hierarchy is provisional tick disorder. 8:42 So it basically, if you are diagnosed with something lower, a higher in the tick hierarchy, you’re never gonna be diagnosed with something lower and it’s gonna be self explanatory once I explain it. 8:54 So provisional tick disorder, you get diagnosed if you have a motor and or vocal tick lasting four weeks, but not longer than 12 months. 9:04 A persistent or chronic motor or vocal tick disorder means that you tick many days, many times a day, nearly every day, or at least a year, at least 12 months, but it’s either a motor or vocal tick, not both, and the onset is before 18. 9:21 So if you are diagnosed with a persistent or chronic motor or vocal tick disorder, you’re not going to later on be diagnosed with a provisional tick disorder because you’re already at that 12-month mark. So that’s what I mean by the hierarchy. 9:34 And then on the top is Tourette syndrome and how you get diagnosed with Tourette syndrome is you have at least one motor and two vocal ticks many times a day, nearly every day for at least a year, 12 months, they wax and wean so they come and go, they change in frequency types, the duration in which you have them and the number of ticks. 9:56 Tourette syndrome is also more common in males and it usually starts with motor ticks and goes into vocal tics, which I’ll explain in the next slide. 10:05 And they usually start around the face and the head, and then go on to the rest of the body. 10:10 But again, this is just typically, not everyone is the same. So there are different types of tics. We have motor tics and vocal tics. 10:22 Motor tics are body movements that could include an R movement, an eye movement, and a vocal tick or sound. 10:29 So that could be humming, clearing your throat, or most noticed and most out there, which is what some of you had voted, is saying or yelling a word or phrase. 10:40 And so, like I mentioned before, often people’s first ticks are motor ticks and then can turn into a vocal tick or add on a vocal tick, but that’s not true for everybody. 10:50 And ticks can also be on the bottom. 10:51 You see simple ticks or complex ticks. 10:54 So, simple tics are actually more common, involve one part of the body or one simple sound. 11:02 And complex tics involve many parts of the body or sounds and can be a pattern or appear to be more coordinated. 11:09 So examples of simple tics are shrugging a shoulder, blinking, clearing your throat, grunting. 11:16 And then examples of complex tics are jumping, twisting, repeating words or phrases, repeating other people’s words or phrases, and they could really present in any, in any way. 11:30 So the development of tic. 11:32 So tics, the onset of tics are usually between the ages of five and ten, so averaging about six or seven years old. 11:40 And on average, the people report that their tics are most severe around nine years old. 11:49 And as children grow into adulthood, tics can resolve in some people, they could become substantially less severe, or they can persist into adulthood. 12:01 It’s virtually impossible to know which category you are going to fall into, which makes it really hard for kids with tics because you don’t really know if this is something that you’re going to live with for the rest of your life. 12:15 And as I’m sure, you know, if any of you are presenting with tics or have family members with tics, I’m sure that they are hopeful that they outgrow it, but it does not always happen. 12:24 So, the worst is usually around nine, and it’s with puberty, and then it tends to sometimes get better. 12:31 Now, adults may also have a more chronic or severe form of the disorder, and again, the reason for this is really unknown, but it is proposed that ticks can become better or worse because of environmental factors, which we will talk about more later. 12:49 So, I know I just threw a lot of information at you. 12:52 Can I just get a quick, you know, thumbs up or reaction if you guys are with me? 12:58 Um, okay, awesome. 12:59 It seems that, okay, good. 13:02 Um, it’s a lot of information and for the sake of this talk, I can’t, unfortunately can’t get into everything as much as I would love to. 13:08 Um, you know, anyone could always reach out to me and ask more questions or do their own research. 13:13 Um, but I just want to make sure that. 13:16 Everything is clear and that you are following along. 13:19 So amazing. 13:21 We will move on for now. 13:24 So according to the CDC, five in six children with Tourette syndrome also have diagnosed another disorder, which is significantly more than children who do not have Tourette syndrome. 13:39 So you know, sometimes that stat just, you know, you hear that stat and you’re just like, okay, but then when you think about it, you’re like five out of six children, that’s a lot of children, that’s 83%, are not only presenting with tics and struggling with their tic symptoms, but they also have something else going on. 13:57 Most common disorders include ADHD, attention deficit hyperactivity disorder, and obsessive compulsive disorder, OCD. 14:07 Some others have disorders such as anxiety, depression, behavioral difficulties, learning disabilities, speech or language problems, developmental delays, ASD, which is Autism Spectrum Disorder, Intellectual Disabilities. 14:21 So I put up here the most updated like percentiles of how many children are affected. 14:28 You could take a moment to really look at that. 14:31 And I feel for some people, those numbers are really jarring at how high those percentages are. 14:38 And again, thinking how five in six children with tics are also with one of these. So we’re going to go into two polls. 14:47 We’re going to do two in a row. So the first one, let’s see, get launched. 15:02 Okay, so do you think a person with tics is more affected by their tics or the co-occurring disorders that can come with it? 15:10 So comorbidities are the same as co-occurring disorders. 15:15 So whatever is happening at the same time, the tics, the other things or both. And again, there’s no right or wrong answer. 15:23 Um, only an individual can really report back if that, you know, which one is bothering them. 15:30 But I can imagine that it’s a really hard thing. 15:32 Again, you know, I’m going to stress the number five out of six children have ticks and something else. 15:38 So it seems like most people are really saying both. Um, and then the ticks and the comorbidities are split. 15:46 And I think probably it has to do with what the, you know, co-occurring disorder is, how bad their tics are, because tics can really be severe, or both, you know, they’re really struggling with a lot of things. 16:02 And so then again, take a look at all of these co-occurring disorders. 16:07 I’m just going to ask you another question is of the following comorbidities or co-occurring disorders which surprised you the most if you didn’t know about it or even if you did which one surprises you the most I appreciate everyone who’s engaging it’s really helpful to get the feedback and be able to engage you guys in the talk seems like learning and speech or language delays is taking the lead but each one really got a vote OCD OCD ADHD and Tourette syndrome are often called like the trifecta, the three of them, it’s most likely a lot of people have at least two, but sometimes even all three. 17:07 And especially with OCD, a lot of the symptoms are very similar. 17:13 They can present similarly with the obsessions and the compulsions. 17:17 And again, not for the sake of this talk, but it really is a lot for these kids to be going through a lot of it. 17:26 So when I first learned about it, I was very shocked also about how many different disorders and really I was really like it really striked me how high those numbers were. 17:41 So we’re going to move on to the environment tech relationship which is really like I feel like the meat of my research and my work and my proposed study. 17:57 So there are a lot of different parts to it and they’re all going to hopefully come together and you know we have room for questions at the end and along the way I’m going to be checking in just again just to make sure you guys are with me. 18:08 But I really want to you know be as in depth but also not get caught up in the little things. 18:17 So I’m going to talk about now the environment tech relationship. 18:22 So the behavior what is the behavioral model ticks or the way of looking at ticks through a behavioral lens is the behavioral model of ticks suggests that ticks are learned behaviors often resulting from negative reinforcement, which I will explain. 18:37 Individuals experience a premonitory urge and performing the tick provides relief reinforcing that behavior. 18:46 So reinforcement refers to the process of strengthening a behavior by making it more likely to occur in the future. 18:53 So essentially, what this is saying, that performing the tick itself is reinforcing, which is making it more likely that it’s going to occur in the future. 19:02 So by ticking, you are reinforcing that it’s gonna happen again and again, because it provides relief. 19:08 So essentially, children will learn, oh, I have this urge, this itch, this sensation, this feeling, right, that we spoke about before, and it doesn’t go away until I do this tick. 19:19 But once I do this or it does go away, but it’s really, really uncomfortable before it does go away. 19:25 So right when I feel this urge sensation feeling, whatever you want to call it, I’m going to do this tick right away or however many times I need to do it or whatever way that I need to do it so that this feeling goes away. 19:39 So next time you’re not going to wait until that feeling gets super, super uncomfortable. 19:43 The second you experience that feeling, you’re going to say, Oh, let me just engage in the tick. 19:47 So you are essentially reinforcing, right, making the behavior, strengthening the behavior, and making it more likely that it’s going to happen in the future. 19:56 Does that make sense? Thumbs up. 20:01 And it’s okay if not, if thumbs down, I can explain it again. 20:04 But it seems like we’re doing okay. Okay, awesome. 20:09 Thank you again for the feedback. I really appreciate it. 20:14 So despite being genetic and neurobiological in nature, right, which I mentioned before, Our research has really shown that ticks are capable of being worsened, improved, or even maintained by environmental events that happen both before and after the tick. 20:34 So more specifically, antecedent variables, so what I have on the left side of the screen, antecedents, which are events, stimuli, or circumstances that immediately precedes or before a behavior, and in this case, the behavior is the tick, such as setting, so it could be a place, a situation, the presence of other people, or the lack of presence of others, of other people, so people being there, people not being there, emotional or cognitive states, so internal feelings or experiences or certain activities. 21:20 So commonly individuals report that ticks increase as they become upset, anxious, stressed, tired, excited, hungry when they transition from a class to another or one situation to another, a special date. 21:38 so it could be a birthday that they tick more. 21:42 Big social gatherings, watching TV whether in a crowd or by themselves, being alone in general, or just talking about ticks. 21:51 So all these things happening before are things that individuals with ticks commonly report that their ticks increase when these things happen and then they tick afterwards. 22:04 And then we have the other end of things, which we kind of spoke about in the previous slide. 22:11 I’ll reinforce that as well. 22:13 Reinforce. 22:14 I’ll talk about that again. 22:17 Our consequences. 22:18 So that’s on the right side. 22:19 We have our consequences, which is any event or outcome that follows a behavior or action. 22:24 In this case, that’s the tick. 22:26 Influencing the likelihood of that behavior, again, in this case, the tick, is going to be repeated in the future. 22:33 Now, for consequences, these can be positive and negative reinforcement. 22:39 And now, again, back with the reinforcement, positive and negative, and there are consequences. 22:45 And this could be a whole lecture on its own, and it’s in a psychology class. 22:49 If any of you guys are psych majors or have taken a psychology class, you could thumbs up me to support me that you will learn a lot about behavior and about reinforcement. 23:02 it is not only its own lecture, but it could be multiple lectures. 23:06 It could be an entire class. 23:08 I took an entire class about learning. 23:11 So for the sake of this talk, I’m not gonna go into depth about that and explain that, but I do want it to be clear enough for the sake of this talk and for the research and like why this is important. 23:23 So I’m gonna make it pretty simple. 23:25 So we have positive reinforcement. 23:26 So it’s a process where you add something desirable after a behavior in this case It’s the tick to increase the likelihood that the behavior will be repeated and then we have negative reinforcement Which strengthens a behavior by removing? 23:43 An unpleasant stimulus or something that that the person does not want or something that is uncomfortable the person doesn’t like so in this case Consequences could be positive reinforcement. 23:54 So we have on the top and what I have in parentheses are social reactions to ticks. 24:01 Now, typically, so an example of this would be parental attention. 24:05 And now parental attention, when you’re thinking about it, it could really manifest as both positive and negative. 24:12 And it’s so hard to continue using the words positive and negative. 24:15 So if I’m unclear, you know, someone please shout it out. 24:18 Um, but positive, what I mean in this sense is offering support or offering comfort saying, are you okay? 24:27 Um, you know, giving them a rub on their back, um, really just like checking in on them, or it could be negative or, you know, a little bit more harsh by saying, stop doing that or why are you doing that or something, bringing attention to the ticks. 24:45 And similarly, pure attention or anybody’s attention can really be reinforcing as well, whether or not they whether or not like it’s something that you you want or not. 25:02 So negative reinforcement, which is the reduction of the urge, which we spoke about previously. 25:08 Right. So the negative what you’re getting rid of is this uncomfortable feeling this like itch. 25:14 this urge, you do the tic, so it goes away. 25:16 So that’s the negative reinforcement. 25:19 And then negative reinforcement can also be escaping a situation that they don’t want to be in. 25:24 So I wrote activities really from discomfort. 25:28 So an example that I would want to give that you can think about, how does this apply to me? 25:34 Because that’s what I really want you guys to take away from this talk is, how does this apply to me? 25:39 Is letting your child or your student or, you know, your friend get out of class early or get out of a dinner or get out of a social situation because they are ticking. 25:54 So you’re eliminating a potentially let’s call it stressful situation for them and providing relief so that they feel they’re like, oh, you know, I get to leave and I get to avoid or leave this uncomfortable or stressful situation. 26:10 So it’s going to become more likely that they’re gonna take in the future to be able to avoid those situations They’re gonna say oh, you know, whether it’s Consciously or subconsciously they’re going to Continue taking a student who’s constantly getting out of their really hard math class or their really hard science class It’s going to say I’m gonna continue tip gang because every time I do my teacher says, oh, why don’t you go grab a water? 26:32 Why don’t you go sit in the nurse? Why don’t you take a break? 26:35 They’re getting out of that stressful situation Um, I know that that’s like a really hard topic to delve into, like with really short amount of time. 26:46 So I just want, again, like a quick reaction. 26:49 If that was clear, thumbs up. 26:52 If we’re good, thumbs down. 26:53 If we need a little bit more clarification, okay, it seems like we’re getting some thumbs up. 27:04 Okay, amazing. 27:06 Um, and again, if you have any questions, please write them down. 27:09 please ask them whether it’s tonight on the talk or on the forum afterwards. 27:13 I’m happy to answer. I know that this can be very confusing. 27:18 I feel like it’s taken me a little bit of time to fully understand it myself. So definitely take the time to research and ask questions. 27:27 So now we’re going to do another poll. 27:31 For some people, they might know that their behavior can tech presentation but did you know that your own behavior can impact tech presentation? 27:40 Did you know that you had an influence on how people’s techs present? And again, there’s no right or wrong answer. 27:52 It’s really just to gain a sense of if you knew before this talk. Give me a couple more seconds. 28:09 Even if you’re not 100% sure, feel free to chime in. 28:15 So it seems like a lot of you actually did know this, which is awesome, especially if you are a friend, a relative, or a peer of somebody with tics, because as we’ll talk about a little bit more, your impact on the environment and your reactions, and you yourself have such a huge influence on an individual’s tics, so it’s really important to become aware of that. 28:43 And if you weren’t aware of that, I’m really glad that I was able to shed some light and you were able to learn a little bit about that. 28:50 So now we’re gonna go into another poll is that I spoke about a lot of antecedents that impact tic behavior. 28:59 And for some people, even people who have tics have been surprised with some of these. 29:05 So I’m just curious to hear from you guys which of the following surprised you the most. 29:10 So talking about ticks, social gatherings, watching TV, hunger, fatigue, if any surprised you. 29:35 Got some watching TV, some hunger, some fatigue talking about ticks. 29:45 Yeah, so I really appreciate those that voted. 29:47 I think that you don’t realize necessarily what kind of things can set somebody off, especially because it can be really different for different people. 29:59 but I do know that sometimes people don’t even realize the things that make these antecedents or consequences that make their tics better or worse. 30:12 Family members I think especially don’t really understand. 30:14 People themselves may pay a little bit more attention, but even people themselves like we don’t really take time to reflect on you know why we do things or how we do things a lot of the time. 30:27 So I think that it’s really important to pay attention and that’s kind of what we’ll get into is a big part of my proposed study and my proposed group is really finding a way to pay more attention and to understand more what it is that are making ticks better and what are making ticks worse and how they present and really just like paying more attention is really important. 30:57 So now we’re going to go into treatment. 31:04 So the first line of treatment is medication management and behavioral therapy. 31:11 And for the purposes of this talk, I’m not going to go too far into, again, I feel like I’m saying that I’m not going to go too far into a lot of things, but I’m just going to talk about it briefly. 31:22 It is important for me to talk about, but these are important topics and each of them can be its own talk. 31:28 So I definitely recommend if it’s something that you are interested in to learn more about. 31:34 But there are different levels of medication and there are different kinds of behavioral treatment, but the current research shows that medication management and behavioral therapy, specifically habit reversal and dominant behavioral intervention for ticks, which I will talk more about, yields really the best results for individuals with ticks. 31:58 So the medication combines with the therapy. 32:02 So you see here more common medication is Clonfacin and Clonidine. 32:08 For those that have children with ticks or family members or themselves, you might be on those medications. 32:15 And there’s also second line medications and third line as well that are options if those don’t work for you. 32:27 So continuing on this behavioral model of ticks and this theory that ticks can be reinforced and shaped by the environment, it would make sense that behavior a behavioral approach would work for something that is adapted or influenced by behavior. 32:50 So the treatments that so see bit, which is comprehensive behavioral intervention is really rooted in HRT, which is habit reversal training. 33:01 So habit reversal training has many different components, which I have laid out for you guys as well. 33:08 You could take a moment to look through it, but I’m also going to be explaining them a little bit more in depth. 33:14 So, HRT starts with awareness training and it’s really an integral component of the treatment because it involves really, again, paying attention. 33:28 A lot of tics is paying attention and really understanding. 33:32 And this awareness, what you’re going to be doing in this treatment, is paying attention to the urge, understanding what this urge looks like when it comes, what it feels like, And then what the tick feels like, what the tick looks like, how it manifests itself, and really just paying attention and becoming more aware of the cycle of what’s happening, what it feels like. 33:59 Then we have competing response procedure, which is where we will come up together in treatment to come up with a competing response or something, an alternate behavior or vocalization that you can do instead of your tick. 34:15 That is more comfortable, less noticeable, less embarrassing than the tick itself that you’re going to do. 34:25 Then there’s an emphasis on relaxation training, which is really important, especially because of some of these antecedents that we had spoken about before. 34:34 Stress can really, really impact ticks. 34:38 And so making sure that individuals, especially children in this case are really know how to breathe and relax you know there are different kinds there’s progressive muscle relaxation there’s box breathing there’s rainbow breathing there’s so many different kinds that you can do that are appropriate for many different ages that you could find with what works for you or your client or your child or your friends and really work with them in order to keep their stress low as again takes really with increased stress and then there’s contingency management and you really want to just make sure that with the treatment and with the competing response you’re sticking to it it’s really hard which is something that I’ll talk about briefly soon is that it’s really not an easy treatment to do it takes a lot of effort awareness and engagement to be doing all those things Social support is really important with this treatment. 35:41 You really want to make sure that you have somebody at least one person on board with you Who’s holding you accountable? Who’s helping you who’s maybe pointing out? 35:50 That’s you know, that’s the only time I would say that somebody is allowed to bring up your tics is during that time They’re able to say oh you you know if they’re working on you with treatment you forgot you ticked and you didn’t notice Things like that. 36:05 So you really just want someone there to support you as social support in a good way can really benefit somebody on their treatment journey and also just in general someone with tics. 36:17 And relapse prevention is you really want to just make sure that you are preparing for what happens when you don’t necessarily follow treatment exactly the way it needs to be and you fall off a little bit and you just need help getting back up there. 36:33 So then we have CBIT, Comprehensive Behavioral intervention for tics, one of my favorite therapies to engage in. 36:40 I think it like works really, really well. 36:44 I’ve seen really, really great. 36:46 It’s known to have really good outcomes. 36:47 And I’ve also seen it really firsthand, which includes psychoeducation, which is a lot of the things that I talked about in the background here, and that’s why I included it here, because a lot of the treatment and especially what I will propose in my study is really heavily focused on getting the education. 37:07 So you wanna know prevalence of Tourette’s and Tick’s disorders. 37:10 You wanna know the history. 37:11 You wanna know comorbidities and co-occurring disorders. 37:14 You wanna know the causes. 37:15 You wanna know the social impairments. 37:19 You really wanna know what kind of supports there are. 37:21 You wanna know everything there is to know about the diagnoses or even just the symptoms, even if you don’t have a diagnosis. 37:29 Then we have HRT, which is habit reversal training, which is mentioned above. 37:34 And then we have functional intervention, and functional intervention is really, really deeply rooted into the behavioral theory and the behavioral model that everything that I’ve been talking about has been rooted in, is understanding antecedents, understanding consequences, understanding what makes someone’s tics better, what makes someone’s tics worse, and how you can best support them in whatever way that is. 38:02 So again, really focusing on antecedents, consequences, and understanding really how your tics react to those things. 38:10 And again, yourself, your child, your student, your peer, your friend, whoever it may be. 38:18 And then again, relapse prevention. 38:20 You just wanna make sure that you have some, you’re able to stick with the treatment. 38:27 So here’s really why we’re all here today. 38:30 What we really wanna know is mindful monitoring. 38:34 What is this group that I’m talking about? 38:38 What is it about? 38:40 Why is it called that? 38:42 How do I get involved? 38:43 What is involved in this and how will this be helpful in supporting my child? 38:50 So the goal is really, oh, I’m so sorry. 38:54 I forgot to say one thing about HRTNC bit, which is kind of really important for the sake of my talk, is that because it’s hard and because it involves so much awareness, it’s really hard to do. 39:07 So even though children can present with tics as early as five years old or even earlier, which is what I mentioned earlier, they can’t really engage in habit reversal training until they are around eight years old. 39:19 The norms of the treatment are eight to nine years old because they’re really lacking that awareness to be able to engage efficiently and effectively in that treatment. 39:28 So again, that’s just like another tidbit to keep in mind when I’m talking about why my proposed study is important and why that kind of fills the gap. 39:38 So my goal of my mindful monitoring parent group is to support parents, increase their education, lower stress levels, and ultimately be able to help them better support their children with tics and just in general, indirectly support children with tics. 39:54 And it’s based on this behavioral model of tics is focusing on adapting the antecedents and the consequences. 40:02 So why a parent group, why, you know, we’re talking about tics and we’re talking about a person being mindful and understanding and awareness and a competing response, how could it, why focus on a parent? 40:14 So there are existing support groups for parents of children’s with disabilities in general. 40:20 And the effectiveness of parent training programs have been demonstrated across a lot of neurodevelopmental disorders and have shown really promising results. 40:29 These studies have shown increased education, decreased stress and anxiety in parents, and overall just better family dynamics. 40:37 So on here, I have specifically for the neurodivergent population, I have autism spectrum disorder and ADHD. 40:44 And the reason why I chose that is because Tourette syndrome is actually also considered a neurodivergent disorder. 40:51 A lot of people don’t know that. 40:52 A lot of people don’t know that about ADHD. 40:54 So, you know, I really, when I was looking at different parent groups, I wanted to focus on similar populations and populations that are presenting with similar co-occurring disorders. 41:06 As I mentioned before, a lot of people with Tourette’s syndrome also have ADHD or autism. 41:12 And generally children with disabilities, anxiety, learning disorders, parent groups have been really, really effective. 41:20 So taking those promising results, keeping in mind this behavioral model of ticks, right? 41:26 Understanding antecedents, understanding consequences, and ultimately the impacts parents have on their child’s environment, which is determined by parents essentially, right? 41:41 Parents are determining who their child is around, what kind of environment they’re in, and what kind of extracurriculars they participate in, and what school they go to, things like that, and what parents have impact on their kids, and the fact there are some children ticking who are unable to engage in treatment. 42:01 So that’s going back to that little point that I added in earlier, is that there are some kids that can’t engage in tech treatment in HRT because they’re too young, they don’t have the awareness, and there are some adults that even it’s just too hard. 42:16 And so I thought, why not target parents instead? 42:20 So I looked to see what existing parent groups there were. 42:24 And guess what? 42:25 Can anyone guess? 42:27 There are no parent groups like this for children with tics. 42:31 There was one study that talked about tics and conduct disorders, but it was really focused on the conduct disorders. 42:40 It just happened to be that the parents, that the children also presented with tics. 42:44 So, it showed promising results, which made me think even more so that this would be helpful for children with tics, but it’s not really was the main focus. 42:55 So I’m hoping to really fill that gap here. 42:59 So the idea for my proposed study is really to target the parents, help parents manage their own stress levels, help them understand tics, help them understand a tick diagnosis, co-morbidities, and basically take the already researched part of CBIT, which is the psychoeducation. 43:17 I have that on the next slide, let me get to that. 43:20 Is the psychoeducation, which is the prevalence, history, co-morbidities, causes, psychosocial impairments, with the functional intervention, which includes understanding antecedents and consequences, understanding, knowing what makes ticks better or worse for their children, and then add in these extra peer support, right? 43:40 Getting parents being able to talk to each other, being able to support each other, share tips and tricks, share resources. 43:47 So essentially what my group is going to do, mindful monitoring is gonna monitor, parents are gonna monitor their own stress levels, their own understanding of ticks. 43:57 They’re gonna monitor and paying attention to their parents, to their child’s ticks and what helps them versus what makes it worse, which will hopefully lead to better family dynamics, more compassion and understanding of tics, reduced stress for parents, which ultimately will hopefully positively impact their children and make a more stress-free environment and more loving environment or more supportive that doesn’t exacerbate their tics. 44:27 So that’s why it’s called mindful monitoring. 44:30 You’re monitoring so many different aspects of it as you’re going on and you’re being mindful about it, You’re paying attention. 44:36 You’re not just seeing and observing. 44:39 You’re really trying to gather data. 44:40 You’re trying to understand more. 44:43 So next steps for you. 44:45 If you’re a parent, a teacher, or someone who’s generally around a child or even adult with tics, you may wanna consider your own actions and how you interact with these individuals. 44:58 Are you giving them more attention for their tics? 44:59 Do you tell them to stop ticking when they’re annoying? 45:01 Do you ask them if they’re okay? 45:03 Give them extra cuddles. 45:04 Do you allow them to avoid going to certain places or doing certain things? 45:07 Look around at the environment. 45:09 See what may be making their tics worse. 45:11 Is it a certain song? 45:13 Is it during meal times? 45:14 When certain people are around, when they’re doing homework, watching TV? 45:17 It’s just really important for you to understand what makes tics worse and better so you could really best support your child, student, you know, or peer and understand really how to best interact with others with tics. 45:32 And now next steps for me is that I’m actually hoping to start recruiting and run these groups in the next couple of months. 45:38 So definitely reach out if you are interested in participating or know someone who will benefit from the group. 45:44 And I just really want to thank you all for being here tonight and listening and engaging with me. 45:49 I want to make sure I leave time for questions, but I really just first want to say thank you to NJCTS for inviting me and having this talk. 45:56 You have been super supportive. 45:58 I became familiar with NJCTS almost three years ago when I first got involved in the Tourette Syndrome Clinic at Rutgers. 46:05 And it’s been a really incredible resource for me and so many of my clients’ families. 46:10 I want to give a big shout out to Dr. 46:12 Amanda Ferriola, who’s been my supervisor and mentor this whole time, who without, I literally would not know anything about tics and I would not be so passionate. 46:21 So thank you. 46:22 I want to thank the Tourette Syndrome and tic community. 46:25 I’ve really learned so much from you guys, and I hope that my research brings more awareness and support that you guys deserve. 46:32 So I really appreciate it. 46:35 Thank you. 46:36 If you have any questions, feel free to email me. 46:39 And that is all. 46:42 Okay. 46:43 Well, thank you so, so, so much, Morgan. 46:44 I really appreciate it. 46:45 That presentation was phenomenal. 46:49 I know the, I’m so excited about your research study. 46:53 One thing I did want to say was, I know this is a little bit different than what you’re going to be doing, but we do actually have a parent support group for the parents of Tourette Syndrome individuals, regardless of what stage they’re in. That happens once a month, the second Wednesday of the month, at 9 a.m. 47:15 I know that it’s a little bit different from what yours is going to be, so I highly suggest anybody that’s interested, definitely check that out. 47:24 But I wanted to say just in case ours is called today’s challenge tomorrow string. I just wanted to plug that in. Yeah, lots of fun. Every program. Yes, love it. 47:35 So I am okay. So now we’re going to hop into the Q &A. 47:44 So first, I’m going to ask the submitted questions and then we’ll switch to the verbal Q &A, which is when we will stop the recording. 47:52 Okay, so a couple questions we have is, how do you avoid reinforcement of the tick? 48:04 And then they put in parentheses, bit confused on the positive versus negative. 48:08 And then she said, I had considered using a fidget or something to balance the ticks so it doesn’t present. 48:16 Yeah. So I first want to say it’s really hard to avoid it. 48:20 And at some point, you’re definitely going to be reinforcing. 48:25 And so basically, the reinforcement is just something that’s going to make the behavior more likely to occur. 48:31 So positive means you’re adding something and negative, you’re taking something away. 48:35 And so I think it’s will continue to be like a hard concept to understand, because then there’s consequence, which decreases the behavior. 48:44 So definitely I recommend, you know, looking more into it, but positive would be adding something to make it more likely to occur, which in this case is not a good thing, right? 48:55 It’s adding a comfort or adding something appraised, something added, and then taking away is that feeling of relief that they don’t need to take anymore. 49:10 Um, so definitely for yourself, um, you know, adding a fidget toy, that’s something, you know, if you’re taking with your hands and you’re doing something else, that’s something good and that could be even a replacement behavior, um, that you can implement instead of doing that. 49:26 But I don’t think that that’s necessarily like reinforcing it. 49:30 Um, I hope that answered. 49:32 So just to clarify, so what a positive reinforcement, would that basically be anything that’s added to an individual that could affect their tics in any way from, let’s say, on a good day, calmer tics. 49:47 Anything positive could either make them better, make them worse. 49:51 It’s just something that’s being added to it. 49:54 Yes, exactly. 49:55 That is not a good thing or a bad thing. 49:57 Negative is not a bad thing, and positive is not a good thing. 50:00 And that’s something that I think a lot of people get tripped up on. 50:03 But positive just means plus, adding something, and negative means taking something away. 50:09 But reinforcement is continuing the behavior or more likely reinforcing. Yes. Beautiful. No, that’s perfect. Thank you for that. 50:20 Another question we have is if a child is 10 years old, is it acceptable to talk to them about their tick so they are aware, aka awareness training, or should a parent not draw attention to the tick? 50:32 So, that’s a great question and I think it really depends on the kid. 50:38 And I think a lot of times as parents or as an outsider, we sometimes are like, oh my goodness, like I feel so bad, they’re ticking or they’re uncomfortable. 50:48 But sometimes the kids really not bothered by it. 50:51 So I would wait and see, take the child’s lead and see, you know, is this something that they’ve noticed? 50:58 Is it something that they’re uncomfortable about? 51:00 Is it something they wanna become more aware of? 51:03 Because it’s a really hard balance of just letting a child with tics be a child. 51:08 You know, they are child first and they also happen to have tics. 51:12 And it’s really important that we don’t only make that the focus because like I had mentioned, it could be really reinforcing. 51:18 Now it can be really helpful to get more information and understand more what’s going on. 51:22 And I think understanding your diagnoses if you have one or understanding symptoms that you’re going through is super important. 51:29 Um, but I think really just, um, again, you can ask other professionals advice, but from my experience and from what I’ve seen is really taking the child’s lead on where they want to go in like their journey and how much it really bothers them because forcing a kid to pay more attention or awareness, you know, you have to want it. 51:50 And that’s kind of also what makes the treatment hard is a parent, you know, we first ask every kid that I work with. 51:57 It’s like, does it bother you or does it bother mom? 52:00 Cause we wanna focus on what bothers you. 52:03 If it doesn’t really bother you, it’s not worth it to really change. 52:07 So that’s what I would say on that. 52:11 Thank you. 52:12 And I think that’s, as someone with Tourette syndrome, I definitely think that that is very, very good advice. 52:20 Okay, so with that being said, before we switch over to verbal questions, we’d like to thank those watching the recorded version for joining us. 52:30 Please take a moment to complete the exit survey. Your feedback is greatly appreciated. 52:34 A recording of this webinar will be archived on our website at njcts.org under the programs tab. 52:40 The blog is now open and can be found directly beneath the archived webinar. 52:44 Any questions submitted during the recorded viewing will be posted there in this isquits. 52:49 We’ll continue responding to them through Tuesday, June 3rd please note that no personal information will be shared. 52:56 So with that I am going to stop the recording.