Navigating Parenthood: Practical Guidance for Supporting Your TS Child

0:03 Good evening and welcome. 0:06 Thank you so much for joining us for tonight’s webinar, Navigating Parenthood Practical Guidance for Supporting Your TS Child, presented by Dr. Jeremy Lichtman. 0:16 My name is Katie Delaney, and I’m the Family and Medical Outreach Coordinator for the New Jersey Center for Tourette Syndrome and Associated Disorders. 0:24 I will be your facilitator for this evening. Before I introduce our presenter, I wanted to go over some housekeeping notes. 0:31 the audience is muted. 0:33 If you are attending the live webinar at 7 p.m. 0:36 tonight, any questions you have can be submitted in the questions box located at the bottom of your screen. 0:42 During the live Q&A, the audience will gain access to unmute themselves. 0:46 Because of this, we will stop the recording right before we start Q&A. 0:50 At the top right of your screen, you will see a paper clip icon. 0:53 There, you will be able to find a copy of the webinar presentation slides and our upcoming events. 0:58 At the bottom of your screen, you will see a react button. 1:02 To the right of it is an arrow. 1:04 When you click the arrow, you will see a few emojis appear, such as heart, a thumb, a thumbs up, et cetera. 1:10 Throughout the webinar, feel free to use this feature to let our presenter know how they’re doing. 1:16 So if you guys can use the react button to give me a thumbs up or a heart, just so I know that you know where it is. 1:25 Beautiful, thank you, thank you. 1:27 Awesome. So, for those viewing the webinar recording, you will not have access to these features, however, you will be able to submit your questions for the presenter to answer. 1:37 Your questions or chat box is located to the left of your screen and looks like a speech bubble. Questions submitted will be posted to our website blog for the presenter to answer. 1:47 The blog can be found on our website njcts.org under the Programs tab. 1:52 This blog will be monitored until, yes, until Tuesday, May 28th. 2:01 Any personal information will not be included in this post. 2:05 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. 2:16 We do not endorse any recommendation or opinion made by any member or physician, nor do we keep any treatment. You are responsible for your own medical decisions. 2:26 Now it is my pleasure to introduce our speaker for this evening. Dr. Jeremy, just let me try that again. Dr. Jeremy Lickman. 2:34 Dr. 2:35 Lickman is a licensed psychologist as well as the director and founder of Central Therapy New Jersey. Dr. Lickman earned his doctorate in school psychology from Rutgers University. 2:47 He completed his clinical fellowship at the Center for Cognitive Behavioral Therapy and at the Rutgers University Tourette Syndrome Program. 2:56 And with that, I’m going to hand the mic over to Dr. Lichtman. 3:01 Thank you so much, Katie. 3:02 I hope everyone can hear me. 3:04 And Katie, if for whatever reason I’m not coming through, just let me know. 3:09 So, before I jump in, I want to just say a few more things about myself, and really, I want to let everyone here know that when I’m talking to you all today, I’m wearing three hats. 3:26 The first is as a clinician who works with children and families with Tourette’s Syndrome, right? 3:32 So that is something I’ve been doing for almost a decade now, that is one of the main hats I wear talking to you all today. 3:41 The second is as an educator. 3:44 I’ve been really privileged to have the opportunity to give presentations like this and others about Tourette syndrome through NJCTS and other organizations. 3:55 And so I like to think of myself also as an educator. 3:58 And third is as an individual with Tourette syndrome himself. 4:04 And all three of these hats or backgrounds inform how I’m going to be speaking with you today. 4:11 Okay, so today I’m going to be talking about parenting a child with Tourette syndrome, and I like to start with stories if I can. 4:21 So I’m going to start with a short essay by Emily Pearl Kingsley who is a mother of a child with Down syndrome, and it’s called Welcome to Holland. 4:35 I am often asked to describe the experience of raising a child with a disability, to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. 4:47 It’s like this, when you’re going to have a baby, it’s like planning a fabulous vacation to Italy. 4:55 You buy a bunch of guidebooks and you make your wonderful plan. 4:59 The Colosseum, Michelangelo’s David, the gondolas in Venice. 5:03 You may learn some handy phrases in Italian. 5:06 It’s all very exciting. 5:09 After months of eager anticipation, the day finally arrives. 5:14 You pack your bags and off you go. 5:17 Several hours later, the plane lands. 5:20 The flight attendant comes in and says, Welcome to Holland. 5:26 Holland, you say? 5:28 What do you mean Holland? 5:29 I signed up for Italy. 5:31 I’m supposed to be in Italy. 5:33 All my life I’ve dreamed of going to Italy, but there’s been a change in the flight plan. 5:41 They’ve landed in Holland, and there you must stay. 5:45 The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. 5:54 It’s just a different place. 5:58 So, you must go out and buy new guidebooks, and you must learn a whole new language. 6:05 And you will meet a whole new group of people you would never have met. 6:10 It’s just a different place. 6:13 It’s a slower paced place than Italy, less flashy than Italy. 6:21 But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills and Holland has tulips. 6:34 Holland even has Rembrandt. 6:37 But everyone you know is busy coming and going from Italy and they’re all bragging about what a wonderful time they had there. 6:45 for the rest of your life you will say yes that’s where I was supposed to go that’s what I had planned and the pain of that will never ever ever ever go away because the loss of that dream is a very significant loss but if you spend your life mourning the fact that you didn’t get to go to Italy you may never be free enjoy the very special, the very lovely thing about Holland. 7:25 Sorry if I’m getting a little teary, that essay always gets to me. 7:31 As parents, we all have these expectations of what parenting is going to be like. 7:37 And any time a parent, their child had any challenge, any diagnosis, any disability, whatever word we want to use, it hurts for so many reasons. And that’s okay. 7:49 and that is normal and there is nothing wrong with that. 7:56 And your child is still beautiful and wonderful and perfect just the way they are. 8:04 But with that perfection there might come some challenges that wouldn’t have been there if you were in Italy. 8:11 And so that’s what today is about is about helping you develop some strategies and skills that you can use to raise your child with So to do that, what we’ll be doing is we’ll be talking about the impact of Tourette syndrome and the co-occurring conditions on the child and family. 8:29 I’m going to talk a little bit about taking care of yourself. 8:32 We’re going to talk about parenting strategies, or evidence-based parenting strategies, and then TS-specific parenting strategies. 8:41 And it’s important to know that even though this is a webinar on parenting, I won’t be some very important topics that parents do need to know about and do need to navigate. 8:53 Those are school-specific strategies, those are medications, and those are empirically-based treatments. 8:58 And the reason I’m not talking about those is because each of those deserves at least an hour webinar on their own, and the New Jersey Center for Tourette Syndrome has a ton of webinars about all of these topics archived on their website, and they will be giving more presentations on these topics in the future as well. 9:18 So that is why I’m not talking about those today. 9:23 Okay, starting with the impact of TS on your child. 9:28 So kids with Tourette’s Syndrome, the research shows us they do tend to be more anxious than their peers. 9:34 They’re more likely to be sad or depressed than their peers. 9:39 They tend to experience, right, kids with Tourette’s tend to be more socially isolated, right, they have lower self-confidence, And they do have more who will impair difficulty. 9:49 Now with Tourette’s syndrome, it’s hard to say where the causal error goes. 9:55 And so what I mean by that is, is it because I have Tourette’s syndrome, I’m now more anxious about being around people, right? 10:04 And that’s why my anxiety is higher, because I’m ticking and I’m worried that people are looking at me. 10:08 Or that I’m anxious about my tics and therefore I’m not going out and I’m not doing things. 10:17 And we don’t really know what the causal arrow is there, but we do know that kids with Tourette’s Syndrome do have higher rates of these challenges. 10:25 However, we also know that kids with Tourette’s Syndrome having a co-occurring condition is the norm rather than the exception. 10:33 About 40 to 60% of children with Tourette syndrome have ADHD, 20 to 40% have OCD, another anywhere from 20 to 60% have a mood disorder, again, a high percentage have learning disabilities. 10:50 So it’s often the case that when we have a child with Tourette syndrome, because the kicks are sort of the loudest and most obvious thing, it feels like the reason that they’re struggling is because of the ticks, but not infrequently. It might actually be because of these co-occurring conditions, right? 11:09 And so all the challenges your child with Tourette’s syndrome might be facing might have be more to do with these other conditions rather than the ticks. 11:17 And so that’s important because sometimes we can blame these challenges on the ticks when really it’s these other conditions that might be, or the symptoms of those, the hyperactivity, the fix-it-ness, the difficulty with letting go of things, right? 11:31 that might be more of a challenge. 11:35 That all being said though, there’s two things I really want to make sure is clear. 11:40 The first is everything that I’m saying now about your child with Tourette syndrome, about families with children with Tourette syndrome, is that this is a very heterogeneous group, right? 11:50 And so what one child or one family looks at does not mean that another child or another family is going to look like that, right? 11:56 and so I’m going to be talking very broadly, but each child in each family is going to look very different. 12:04 The other is we do need to know that things for a child with Tourette’s syndrome, whether because of the co-occurring conditions or the ticks themselves, do tend to be harder, and that is important to keep in mind. 12:16 That being said, it doesn’t mean that it’s only the child who’s struggling. 12:23 And so what we see for families and caregivers of children with Tourette syndrome is that one, we have increased parenting aggravation. 12:30 So what that means is parents of children with Tourette syndrome tend to be on a shorter fuse. 12:36 There just tends to be more that can set them off more easily and that patients can be a little bit afraid. 12:43 And that makes sense because of all the extra challenges that might come in with raising a child with Tourette syndrome. 12:49 We also tend to have less positive parent-child communication. 12:53 So on the one hand, that might mean more fights, more disagreements, but it also just might mean a lot more just do, do, do, schedule, schedule, schedule, busy, busy, busy, and less time to just have nice conversations. 13:07 We also have disrupted family routines. 13:09 So to give kind of a big example of that, when I was in middle school, my older sister was in high school and she when she was at our high school graduation my whole family went you know me my parents my younger sister and at some point during the graduation my father and I stepped out to take a walk because my tics were really bad and they really were very disruptive I mean I wanted to take that walk but what that means is that my father missed a part of my sister’s graduation that is disrupting a family routine it’s not just about you know when you have dinner, but these bigger things too. 13:48 Parents of children with Tourette’s often talk about feeling isolated, right? 13:52 And that could be for a number of reasons. 13:53 One, it might be because people make comments about their child, have said things to them, or they’ve heard them talking about their child to others. 14:02 That’s gonna increase that feeling of isolation. 14:05 It could be for fear of how people are going to judge their child, right? 14:10 You might not go out because you’re worried about what people might say, and also to protect your child, right? 14:19 You might feel, I can’t do these things, I can’t go out, I can’t spend time with others, right? 14:23 Because then that judgment might happen. So that means there’s increased isolation. 14:29 I would say many, many parents or families who come to my office, when parents come in and talk about their child with Tourette syndrome, they are very often anxious about their future, right? 14:40 How going to be able to do school? How are they going to be able to do college? 14:43 How are they going to be able to have a partner? How are they going to be able to raise a family? 14:49 So there’s increased anxiety about the future. And then that guilt, right? 14:54 You know, as every parent feels whenever there’s anything the slightest bit that seems like off with their child, is it my fault? 15:02 What did I do wrong? Did I give it to them? Right. So we have that guilt. 15:08 And again, because most children with Tourette syndrome have a co-occurring condition, this is all sort of intensified or increased because of that. 15:19 And so what we have here is a situation where children with Tourette syndrome are struggling, broadly speaking, and the parents of children, the families of children with Tourette syndrome are clearly struggling. 15:33 So what are we going do about it. So the first thing, parents, you guys need to take care of yourself. 15:44 So why? What do I mean by that? 15:49 If you’ve ever been on an airplane on the flight, I think most of us have at this point, they always have that little video on the screen in front of you or, you know, the flight attendant standing in front of the plane and they do a whole little safety video that no one’s really paying attention to, right? 16:05 They do the safety video and all the things that you need to do to be safe. 16:09 And one of the things they talk about is that when the air mask drops, if there’s something dangerous going on on the plane, if you’re sitting with your child you put the mask on yourself before your child. Why? 16:23 Because if God forbid you lose consciousness, because that mask is not on, even if it’s on your child, if there’s some other danger that you need to be able to help your child with, you won’t be able to. You’re not there. You’re not ready. 16:38 And taking care of yourself is the same putting on that oxygen. It’s how you are there and present for your child. So how do we do it? 16:50 So one, I know relaxation and enjoyment. I know I don’t have time. It’s so hard and all. 16:55 Yes, I know it is really hard. 16:58 But this is actually critical because when you don’t find ways to recharge your battery, you’re running at a lower percentage. 17:07 And when you’re running at a lower percentage, everything slows down and your ability to be there for your child diminishes. 17:15 And also, you deserve it. 17:18 You deserve it as a human being and as a parent and as a parent who is raising a child who might be a little more challenging. You deserve it. 17:26 And so by relaxation and enjoyment, right, that could look so different for anyone. 17:31 That could be anything from sleeping extra, right. 17:36 My wife and I, we have a one and a half year old and I do all the morning shifts because she needs to sleep at night. 17:41 So that’s relaxation for her is sleeping later. 17:45 I stay up later at night and play video games because for me, that’s relaxation. 17:49 That’s what recharges my battery. 17:51 They could be going for a run. 17:52 It could be watching TV. 17:54 It could be seeing friends. 17:55 It could be a date night with your partner, right? 17:57 It doesn’t matter what it is. 17:59 You just need to be making sure to do things that recharge you and your scheduling. 18:04 It’s not just something that you say, I’ll get to eventually. 18:07 It becomes part of your calendar, which leads, not very nicely, to to-do lists. 18:14 One of the things that can happen when you have a child who has extra needs is it can feel like there’s all these big things that constantly need to be taken care of, right? 18:24 The IEP meetings at the school, the doctor’s appointments, the basketball, the OT, the speech therapy, whatever it is. 18:32 And we all have these to-do list items, which are the sort of day-to-day tasks we need to take care of. 18:37 grocery shopping, dishes, laundry, all of that stuff. 18:43 And those are the things that very easily can feel sometimes like, oh, I can do it later, I can do it later. 18:49 But every time we push off those to-do list type activities, what happens is that they build, and they build, and the dishes are spilling out of the sink, and the laundry is blowing up out of the laundry basket. 19:01 And then it feels more and more overwhelming. 19:03 And the more overwhelmed we feel, the more likely we are to just shut down. 19:07 And so if we can take care of those in bite-sized chunks, it actually helps a lot for us to be present and be able to take care of the bigger thing. 19:18 Social support. 19:20 So the idea here is that you all need, everyone needs support. 19:25 Everyone needs a social system. 19:28 And what that means for you can be very different. 19:31 Maybe it means talking on the phone with your parents or sibling. Maybe it means hanging out with friends from college. 19:40 Maybe it means being part of a bowling team. 19:43 Maybe it means coming to the NJCTS parent support group that happens once a month on, I believe, the first or second Wednesday of every month hosted by yours truly. 19:55 But you need to find some way to get support from people around you. No man is an island. 20:01 we need support. 20:04 Sometimes the user just needs to walk away, turn around and walk away from all the problems and all the challenges and all the difficulties. 20:11 I know, I know, I feel like you can’t do that, but it is better to walk away for a few minutes, right, and recharge or collect yourself than to stay frazzled and harried and try to do things. 20:24 I know personally, when I am the more stressed and anxious I am, the worse I perform at something as simple as hiding my shoe. 20:31 So how much more so is saying something like raising a child. 20:36 Sometimes we just need to walk away, slow down, and or walk away. 20:41 And also sharing the burden, right? 20:45 I think, you know, in my experience clinically, you know, usually 60 to 75, 80% of the parenting work tends to be done by the mother. 20:56 And I think research typically supports that. 21:00 But you need to share the burden. 21:02 I don’t care if it’s dad who’s doing more work or mom who’s doing more work. 21:05 I don’t care how it’s split, but raising a child is a joint effort and you need to be able to share that burden. 21:14 And if you don’t have someone you can do that with, find someone, whether it’s a parent, a sibling, a friend, New Jersey Center for Tourette Syndrome, a therapist, find someone to help share that burden with you. 21:27 And why? 21:28 Because by taking care of yourself, you’re reducing stress and frustration, right, and you’re increasing your self-competence The more you do these things right in whatever sense makes sense for you guys individually Right. 21:41 This list is not like every one of you at you every one of you the hundred percent not at all But doing whatever from this list works for you. 21:49 It will actually make you feel more competent and better as a parent Okay. 21:57 Now let’s actually get into parenting itself And so, the parenting strategies I’m going to talk about, I believe, are actually just overall good parenting strategies. 22:09 So, what happens sometimes is we can forget or can feel like we’re not allowed to use parenting strategies with our child with TS, with Tourette syndrome, but in fact, it’s even more important to have strategies to use and plans to use with your child with stress syndrome and these current conditions, even more so than a child would have. 22:30 And so the two main categories of strategies that I’m going to be talking about are strategies for increasing compliance and motivation from your children, and also strategies for emotionally supporting and improving the relationship and validating the child. 22:46 So when we talk about motivation strategies, just as a starting point, these are strategies where you as parents have certain expectations and demands, and you want those expectations demands to be met. 22:58 And what’s really important is that just because your child has Tourette’s Syndrome or any of these co-occurring conditions doesn’t mean you can’t have expectations of them. 23:07 It doesn’t mean that they are not capable. 23:10 And it’s really important that we don’t fragile our children, that we don’t let the diagnoses, disorders, challenges, whatever we want to call them, make them less capable than they are. 23:21 Doesn’t mean we might not have to shift or adjust things sometimes, and we’ll talk about that a little bit in a bit. 23:27 But we don’t need to fragilize our children just because they have transplants. 23:33 So what are some pretty core strategies in the motivation camp? 23:40 So the first is effective prompt. 23:43 And so what this means is a prompt is not a request, it’s a demand. 23:49 So for example, if you want Michael, your son, Michael, to be setting the table. 23:54 It’s not, hey, Michael, honey, can you please, if you’re feeling up for it, you know, go over and set the table for mom or for dad, please. 24:03 That’s that, because then he can say no. 24:05 And what are you left with? 24:06 You made it a request. 24:07 You didn’t make it an expectation. 24:09 You didn’t make it a demand. 24:11 So it’s a demand. 24:12 Michael, go set the table now, please. 24:15 You can still use please with still being polite, right? 24:18 We want to teach our children to be polite, right? 24:21 But it’s not a request. 24:22 It’s not, Michael, can you please go set the tables? 24:25 Michael, go set the table, please. 24:29 Also, we want these prompts to be bite-sized and specific. 24:36 And this is obviously going to be based on developmental level. 24:39 But what that means is, instead of saying something like, Michael, go clean your room, it might be, hey, Michael, can you go make your bed? 24:49 Oh, sorry, not can. 24:50 Michael, go make your bed. 24:52 Right? It’s specific what we’re asking, what you’re expecting him or asking him to do. 24:57 Right? And then when he makes a bed, you can then say, Michael, now go clean the floor. 25:02 Right? If he understands, you know, clean the room, great. 25:06 But we want to make sure that the size of the, of the, of the prompt, right, fits with what he is capable of in the moment. 25:14 And then also, right, we want them to be developmentally appropriate. Right? 25:18 So, you might be able to, right, your nine-year-old, you can say, hey, Michael, go set the table, right? 25:25 But your four-year-old, you might not give them the knife and say, go ham with your chicken and hopefully it will all work out, right? 25:31 So we want the prompts to be developmentally clear. 25:36 Okay. 25:37 Second strategy. 25:38 This is one of my favorites, plan, detaining, and ignoring. 25:42 The way to think about it is, most of us live our lives on autopilot. 25:48 So what do I mean by that? 25:51 I won’t be able to see if you do this, but mentally, or even physically, raise your hand if you’ve ever gotten into your car and then you’re driving maybe to work, home from work, some place, you know, the stop right, some place you go regularly, you get in your car, 10, 15, 20 minutes later, you’re there and you’re like, how the **** did I get here? 26:09 That feels kind of dangerous, right? 26:12 Right? 26:13 Well, you’re just on autopilot. 26:15 You’re just driving without even realizing what you’re doing, right? 26:20 A lot of us live our lives that way. 26:22 We’re kind of focused on the future, and our brains are built this way. 26:26 And so as long as everything is going according to our unconscious expectation, right, we’re just sailing along, right? 26:34 We’re on autopilot, like driving to work. 26:37 But when something happens that bumps up, right, a road bump comes, right, all of a sudden you’re like, oh, wow, I’ve got another five minutes left to this drive. 26:46 So when a road bump happens in life, right, that’s what we tend to do. 26:51 And when it comes to parenting, we have, even though we’re not always super conscious of them, we have just these expectations of what’s going to be happening with our child, right, that they’re, you know, even though we know intellectually, like, we don’t expect them to be running around drawing on the wall, breaking all the pictures, tearing the shades off the windows and all that stuff. 27:08 We know, but we don’t actually live that night. 27:13 And so what happened is when our child is doing something that is problematic, it’s that road bump and we’re off autopilot. 27:19 And so what ends up happening is so often our children hear us criticizing them or reprimanding or correcting them for what they’re doing wrong and not attending to what they’re doing, right? 27:33 And there’s so much that our children are doing right. 27:36 And so planned attending means giving specific verbal praise for the things that we want to say. 27:41 So, you know, Michael is sitting and playing with his toy for, you know, a half hour on his own. 27:46 Every 10 minutes, you just kind of walk in and be like, Michael, you’re playing so nicely, and it’s letting daddy cook dinner. 27:52 I really appreciate that, right? 27:53 We are attending and giving praise for what we want our child to be doing, even though it’s just sort of the expectation. 28:02 And the corollary of that is that we also want to work on ignoring the behavior that might be annoying but are not dangerous. 28:15 So what I mean by that is the whining, the nagging, right? Are we there yet? Are we there yet? Right? 28:23 Or, mommy, mommy, why isn’t dinner ready? Why isn’t dinner ready? Or, but I want it, I want it, I want it, I want it! 28:31 But even hearing myself do it, I want to punch myself in the face, right? 28:37 But that is the kind of stuff that we actually want to ignore, and it’s not dangerous, right? 28:42 And by ignoring it, when kids do that, they are looking for attention, and if we don’t give them attention for that, but we do give them attention for what we want, Michael, you know, you asked me for the apple and when I said no, you calmly said, okay, I’m so proud of you, when we’re giving attention for that, right? 29:01 We’re giving them the attention for the things we want, and we’re going to have less of the annoying behaviors, not gone, kids love still kids, but we’re going to see more of what we want and the behaviors that we want to see out of that. 29:14 And then finally, we have rewards and consequences. 29:18 So I’m a big believer in token economies, sticker charts, all these things where, you know, for kids doing the things that we as parents want them to do, right? 29:27 But they might not be so interested. 29:28 I’m a big believer in giving you rewards for all kids for EZ. 29:32 But let’s actually think about your child with Tourette’s syndrome and the reality is some things, maybe a lot of things, are going to be harder for them. 29:42 Not impossible, but harder. 29:46 And so the idea that if it’s going to take extra effort to do some tasks that, right, maybe for another child won’t be a big deal, setting the table, right? 29:53 I remember when I used to bring up food on meals with my family, I might shake a little because of my **** and it made me anxious, right? 30:02 Some of these things might be harder for your child with Tourette’s Syndrome, and so finding ways to reward them, I don’t care how it is, whether it’s a sticker chart, check marks, some sort of token economy where they earn bigger rewards, rewards right away, I don’t care what the rewards are, more screen time, toys, whatever, you guys can work that out. 30:19 The idea that we should be rewarding our kids for doing things that might be challenging for them and that we want them to do, but they might not be. 30:28 And, again, the corollary for that, then, is consequences for behavior that we don’t want to see. 30:34 Now, let’s be very, very clear, right? 30:36 Obviously, we’re not talking about punishing your kid for having tic or punishing their tic. 30:42 That is a no-no. 30:43 That is not something. 30:44 That is not what I mean. 30:46 But we can use consequences, right, for behaviors that are problematic, as long as we are clear ahead of time about why the punishment is happening and that the punishment fits the crime. 30:59 So if Michael is not getting, how do I pick it on Michael today? 31:02 But if Michael is not getting off his Xbox at night for bedtime when he’s supposed to turn it off, for every minute that he doesn’t get off, he loses a minute or more the next night when he wants to play Xbox or have his screen time. 31:17 And again, kids, doesn’t matter what diagnosis they have, You know, they are anti-fragile, and what that means is they need structure, they need sometimes to not get what they want, but they also need to get rewards for this thing that we want. 31:36 So let’s talk about validation strategies now. 31:40 So first, why, so actually, what do I mean by validation? 31:45 Validation means communicating that what a person thinks, feels, or does makes sense and are understandable to you in the particular situation. 31:56 And the reason why we want to validate is that by validating a child’s experiences, we actually reduce emotional arousal, and tension, and fighting, so they feel understood and heard. 32:08 We actually help them understand their own emotions. 32:11 And that’s really, really important. 32:14 And so when to use it, the idea is we want to use validation not in the middle of a fight, When the kid’s tantruming and their emotions are up here, and your emotions might be up here, and you’re not going to be able to validate very well, that’s where we go back to the plan of attending and ignoring, rewards and consequences. 32:32 But we use this in the calm moment. 32:34 When you’re lying in bed with Michael, and he’s going to sleep, and you say, hey, Michael, I know that you had a really rough, seemed like you had a really rough day today. 32:41 You had a hard time doing your homework and everything. 32:45 Seemed like you were really upset, huh? 32:48 That’s the time to do it. 32:49 And what’s really clear is when we’re using validation, we’re using empathy, we’re not fixing the problem, right? 32:57 In fact, trying to fix the problem can be very invalidating, right? 32:59 So you’re sitting with Michael, lying with Michael in bed, and talk about how he had a really hard day, and then you go straight to, but here’s the thing, you can’t yell at mommy and daddy like that, right? 33:09 Then you’re jumping to fixing the problem. 33:11 And now his defenses are up, and the communication is shut off. 33:16 So if we’re going to validate, we’re validating, we’re not in problem-solving mode. 33:21 How do we do that, though? 33:24 So one is active listening. 33:26 So what that means is when we’re validating, phone away, computer, laptop, tablet, away. 33:34 You cannot validate and be actively listening when you are distracted by something. 33:39 You just can’t. 33:40 It also means, you know, using body language to show you’re listening to them, gait, a-ha, nods, right? 33:47 All of that. 33:48 We’re also reflecting without judgment. 33:51 So that means we’re using the child’s words to say what they’re, to just repeat back without judgment. 33:57 So Michael says, you know, I just had a really, you know, my teachers were so mean to me today and I just couldn’t handle it. 34:03 And then when you told me to do my homework, I was just so angry I exploded. 34:07 Wow. 34:07 So, you’re having a really hard day in school, your teacher was not being understanding, and then when I asked you to do your homework, you just were just so overwhelming, you just exploded. 34:17 Wow, that is a lot. 34:22 And finally, it means asking what your child needs from you, right, rather than trying to, than assuming you can, you know what your child needs, right? 34:30 So Michael, you know, it seems like there’s been a lot of issues with your teacher recently. 34:36 How can I help you? 34:37 Do you want me to talk to her? 34:39 Do you want me to go to the principal? 34:39 Do you want to talk to your dog about right whatever it is? 34:42 But you’re asking what your child needs me rather than jumping in and saying what your child needs for you Okay Now let’s get to the juicy stuff. 34:54 Let’s get to the TS specific parenting strategies So I List a number of different strategies here Again kids with Tourette syndrome heterogeneous group, right? 35:06 You got to find out the balance of these or which one of these work best for your child and your family, right? 35:11 And if you’re not, do all of these to 100% either, right? 35:15 So I do more work for you and your family. 35:19 So this is a picture of me and my parents and my wife at my graduate school of graduation. 35:25 I was so young and cute. 35:30 Anyways, so I’m really lucky. 35:34 Those are my parents. 35:35 And if you’re there, mama, hi, I love you guys. 35:41 They’re both psychologists. 35:42 And so I, they knew very early on that I had Tourette syndrome and they got me some diagnosis early and they got me treatment very early. 35:51 And so, and they also talked to me about it. 35:55 So as like a little kid, I was this weird kid who could give a very specific definition of Tourette syndrome, which is a neurological condition with involuntary movements and sounds. 36:04 I don’t even know if I knew what that meant when I was a kid, but I could see that. 36:10 But the only reason I could is that my parents did this really wonderful thing where, like I said before, we talked about it. 36:20 So often when parents come to my office, they’ll often have seen, you know, usually a pediatrician, maybe a psychiatrist or a neurologist first, right? 36:29 And they’ve often gotten the message that you don’t talk about the tic, right, or you don’t mention the tic. 36:36 And that’s actually a big mistake, because if your child is ticking and you’re not saying anything and your child knows something is going on because they’re the ones ticking they feel like oh my god there’s something wrong with me I can’t even talk about it and that can create a lot of shame and I know you’re just listening to the advice of the professionals right but really what these professionals I hope are meaning to say is that you don’t comment on the ticks themselves when they’re happy it does not mean that you don’t talk with your children about there it is. And the sooner that you can do that, the better. 37:14 I mean, how you do that, obviously, in developmentally appropriate ways, but that is, that made such a difference for me and my family that my parents gave me these tools to be able to talk about it, right? 37:26 To know what it was and to comment on it, but not make it the only thing we talked about. 37:32 That by the time I was in high school, I actually developed my own ways of talking about it. 37:35 I used humor a lot and lots of jokes, right? And that really worked for me. 37:43 And in addition, the research actually shows that kids who can talk about their tics actually often have better social-emotional outcomes. And now how to do this, obviously, is at your own child’s pace. Every child is different. 37:57 I remember one family I was working with, the child went from not being able to hear or say word kicks, they would freak out. 38:06 It would be so overwhelming for them to even hear it because their family never talked about it to the child within two years, three years with giving presentation to their class and others about Tourette’s Syndrome. 38:20 So communication and those tools are key. The fun house. 38:29 So even without comorbidities, like I said before, social isolation is a real risk for kids with Tourette’s Syndrome. 38:37 And so if you make your house the fun house where all the kids want to come and play and hang out, you have the opportunity to give your child the opportunity to practice socializing and developing social skills while your child is in the place where they feel safe and supported and you’re there to monitor if need be. 39:01 This is one of the most important things my parents did for me. 39:05 They made my house a funhouse. 39:08 So how do you do that? 39:11 You’ve got to have the right snacks. 39:14 I know, you know, do these snacks cause ticks get worse or, you know, teas and all the stuff? 39:19 You’ve got to have the right snack. 39:22 Kids love going places where there’s good snacks and good kids. 39:29 Now I’ve had parents ask me, well, what snacks do I get? 39:32 Very simple. 39:33 Think back to what you liked when you were a kid, go to the shop for it, you’ll see all the same stuff is around, just get the same stuff. 39:42 You also want to have toys. It doesn’t mean you have to have the newest toys, the flashiest toys, right? 39:49 You do have to have fun toys, right? But fun toys, I don’t think it could just be a giant bin filled with Lego, right? 39:56 Or a dollhouse, or frisbees and basketballs, right? 40:00 Or, playing some wood and hammers and nails. 40:03 I’m only a little bit joking, kids can play with a lot of these things pretty well, actually. 40:08 And games. 40:10 Have games. 40:10 Board games, right? 40:11 Video games, right? 40:13 Too much of video game playing is happening online these days where kids aren’t with each other. 40:19 I used to play video games all the time with my friends, but we sat next to each other doing things on the couch, playing together, or we play a single player game, but we switch off the controller. 40:27 It doesn’t matter, but you also want to have a game. 40:34 We also want to help your child find their passion. 40:38 One of the things that research shows is that when children with Tourette syndrome are engaged in an activity that kind of keep them firing at all cylinders, kind of the fully focused and in that slow state, and that is an activity that they’re going to feel passionate about more often than not because it’s a great feeling, their tics tend to disappear. 40:58 Right and by helping your child find their passion, right? 41:03 It actually can increase those self-confidence outside of their text, right? 41:07 Which can have this generalizing effect. So helping your child find their passion, right? 41:11 It could be reading it could be sports. It could be video games. It could be acting. 41:14 It could be thinking it could be sewing I don’t care what it is helping your kid find their passion and the corollary of that though is scheduling. 41:33 We know for children with Tourette’s syndrome that their tics tend to get worse when they’re tired, when they’re hungry, when they’re frustrated, when they’re angry, right? 41:44 High emotional or helpful. 41:47 And one of the things that keeps kids tired and hungry and frustrated and all of that is being over scheduled. 41:55 And it’s a thing that every parent feels like need to do today. 41:58 It’s every parent around you is doing it, but here’s the thing. 42:04 Even kids without any challenges or diagnoses or whatever, they need to play. And even more so for your child with Tourette’s syndrome. They need to play. 42:15 They need to have the opportunity to just play. 42:21 And I actually worked with a changes that they made and their child is actually now I think a very competitive swimmer and that does take a lot of time but they went from having a whole slew of activities after school to just to feel right and not every day and it made such a difference for their child so we really want to make sure even though while yes we want to help our children find their passion we want to make sure we’re not over scheduling them and by the way how do you know you know what their passion is and how to not over schedule them talk to them right? 42:54 When your child tries something new, karate, basketball, swim, whatever, right? Ask them about it. 42:59 Ask them how it’s going, what they like and don’t like about it, right? And when you’re scheduling more and more, check in with your child. 43:06 Hey, do you feel like you’re getting enough sleep, right? 43:08 Does it feel like I’m asked, we’re doing too much, right? 43:11 I’ve had families who have come to see me for therapy, for managing the tics, for the C bit, and I’ve actually said, you know No. Let them stay with basketball, and let’s check in on therapy in a few months. 43:24 They’re doing okay, right? One more thing on the calendar might just be too much. 43:32 And I know I said I wasn’t going to talk about this, but real quick, can’t help myself, in terms of getting supports in school, there are two main types of support. 43:41 There’s what’s called a 504 plan, which is part of the American with Disabilities Act. 43:45 It’s basically a way to get some accommodation for your child, and then there’s what’s called an IEP, or individualized education plan. 43:51 Basically, your child would need to get a whole sort of academic and social-emotional and cognitive assessment. 43:59 And then they use all this information to basically say whether or not your child is classified according to a whole classification system, and then whether or not they deserve services. 44:07 And then they have a whole document where it’s called the IEP, where they have goals and a plan to help your child achieve those goals and the accommodations that will help them achieve those goals. 44:16 And it’s a legally binding time. That’s cool. 44:20 And from treatment, there’s comprehensive behavioral intervention for ticks, but see that that is a behavioral therapy that is meant to help children with or individuals with Tourette syndrome learn strategies to manage their ticks. There’s medication, so medications come in. 44:38 There’s three main classes of medication right now for Tourette syndrome, a few more are in research. 44:43 There’s what’s called alpha agonist, those are actually a heart medication, but they seem to help with very mild and moderate tics, and also with more mild ADHD. 44:53 And then there’s what’s called the neuroleptic class, which are broken up into the atypical and the typical. 44:58 And these are very heavy duty drugs with a lot of side effects, the atypical less than the typical, and these are really more meant for severe tics and more significant tics. But they do have a lot of side effects. 45:14 And then finally, social support. 45:16 And this can be anything from, you know, just play groups for your friend, places for them to socialize, to TS specific support. 45:25 That could be Camp Fantastic, which I think is coming up in June. That’s run by NJCTS. 45:29 It’s a weekend camp for kids and families with Tourette’s Syndrome. There’s the Rutgers Tourette’s Syndrome program. 45:36 Every year in the spring has their group, which is a group for skills for managing life with Tourette’s Syndrome. 45:43 It’s a social support group. 45:46 And again, so many kids with Tourette’s Syndrome don’t meet other kids with Tourette’s Syndrome. 45:50 And that is one of the most important things we can also do, if possible, is help them meet other kids with Tourette’s Syndrome so they don’t feel like they’re the only one. 46:02 Okay, so I started with this story, so I’m gonna end with a story. 46:11 My first summer going to sleepaway camp, summer after seventh grade, I think, and I was going to camp that I knew no one there. 46:22 And so what my parents did was they, and I know about all the stuff they did later as adults having conversations, I didn’t understand what was going on when I was a kid, but they basically went and gave a talk to all the staff on the weekend before camp started, a training on kids with disabilities, but really were training for what to know about a child with Tourette’s syndrome. My older sister was going there to work. 46:50 They took me up so I could get familiar with the camp and meet the big staff people. 46:54 And they made sure my counselor was someone who was friends with my older sister, who was just a good guy. 47:01 And so I went to camp that summer, very anxious. 47:05 And there was a Jewish camp, and so prayer is a big part of three times a day. 47:09 I remember, you know, prayer is a silent thing where, you know, you’re in a room together and there’s a lot back and forth, but there is time that you’re just totally silent. 47:15 And I’m standing there and I go in this big room filled with kids I don’t know on the first day. 47:22 I go, which was one of my tics at the time. And I remember hearing people around me talking. 47:30 I see people looking. Who did that? What’s going on? That’s so weird, right? 47:35 Why are they doing that, it’s supposed to be quiet. 47:39 As you can imagine, I didn’t feel so great about that. 47:44 But kids came over to me and they asked me about it. 47:50 And I really have to show so much gratitude to my parents because all those TF parenting specific strategies, those are what my parents did for me. 47:59 And because of that, I was able to talk with these kids and explain, and I knew I had social skills and I was socially capable because I had people over and I really do it, and I did that all the time, right? 48:11 And I knew what I cared about, and I passed them out, I was able to talk about that. 48:14 I was so ready to excel at camp, and not only did I excel that summer at camp, my trip kind of made me a little bit of a mini-celebrity. 48:23 Everyone wanted to know me and to talk to me and ask me questions, and it was awesome. 48:28 And I couldn’t have done that. I couldn’t have been in that place if not for my parents. 48:34 And again, I have so much gratitude towards them. 48:36 So they’re here. 48:37 Thank you, Mamanaba. 48:41 All the strategies I talked about, there’s evidence behind them. 48:45 But this is what my parents did for me. 48:46 And it made all of the difference. 48:49 And so I hope that now that we’re coming to an end, that all of you feel that one, I hope that you all know that you’re probably doing a lot of these things already, and that you know you’re on the right path. 49:03 And then I also hope that you picked up some things that maybe you weren’t doing, or that you want to try, but that seemed interesting. 49:09 And I hope I explained them in such a way that you feel that you can bring these strategies into your life and into your home and be the best support you can be for your child’s life. 49:19 And always never forget, your child is so much more than their team. 49:25 All right, thank you very much. 49:27 I’m going to stop sharing my screen. 49:29 And I believe it’s that last 10 minutes for Q&A now. 49:34 Yes. Thank you so, so much, Jeremy. 49:37 So, right now, we are going to put up just a little bit of information on NJCTS and so some upcoming events. 49:47 What I wanted to do was for a few minutes I wanted to, as we jump into Q&A, I wanted to ask the questions that people submitted and then once we go over those I’ll stop the recording and then we will go on to any verbal questions that people have. 50:07 So a couple of questions that were submitted are there with me. 50:15 Okay so one question states you talk about the importance of taking care of ourselves as parents but what if we just have the time or space or energy to do that. Yeah, I hear you. 50:33 And here, I am going to reiterate what I said, right, especially the energy part. 50:41 Again, taking care of yourself could be taking a nap, maybe, right? But it is so important to find ways to recharge. 50:50 And I think something here, I I don’t know anyone’s individual situation. 50:54 I do think sometimes what happens is you need to ask yourself and say, is it that I don’t have time, or is it that I feel like I can’t because I’m not doing enough if I take that time to myself? 51:06 But I really think it is so, so important. 51:08 And so maybe it’s not an everyday thing, maybe it’s not an every week thing, right? 51:12 It’s gonna vary, but you need to take time for yourself. 51:17 Again, maybe that’s just taking a half hour nap the middle of the day one day, right? 51:22 Maybe it’s asking your partner to be in charge of everything for an hour and you can just walk away and go for a walk, right? 51:30 But you need to find ways to take care of yourself because you’re not going to be able to be there for your kids and for your spouses and for your family and for your friends if you don’t take time for yourself, right? 51:41 And again, I want to be clear and I know it feels like it’s a lot and is a lot, but that’s so important to schedule it, right, to build it in to your schedule. 51:50 Again, what it looks like is going to be different for every parent, right? 51:54 But I really, really believe it’s critical to find that time for yourself. 51:58 And I think if you get into the habit of that, it actually becomes less stressful to do that. But if you’re not doing that, it feels really, really overwhelming. 52:08 I think if you also are able to start doing it in a little bit, it will actually start feeling less stressful over time. 52:13 I hope that is helpful. 52:17 Yes, definitely. 52:17 Thank you. 52:18 And then I have one more question. 52:22 It is, you talk about not treating our children as fragile and still holding them accountable, but how do we know whether or not our child really can or can’t do something because of their TS or other conditions? 52:36 So I have another excellent question. 52:40 And also, it’s a question where a little bit, it’s going to depend on your child, right? 52:44 I can’t give you a blanket answer, right? 52:47 Kids are different. 52:49 I think there are two things to keep in mind though. 52:53 One is, actually three. 52:57 One is, think about what you’ve seen your child do, and use that as a little bit of a baseline. 53:04 Two, try it. 53:06 Try having some expectation for your child. 53:09 And if it doesn’t work out, right, then that’s okay. 53:12 then you can talk about it and adjust the expectation, right? 53:17 But sometimes you need to try, make it a little bit of an experiment. 53:20 And an experiment doesn’t fail if like, you know, you ask your child to set the table for the first time and they throw a fit, and then it’s like, oh, I guess I can never ask them again, right? 53:28 You might need to try a few times to really, really learn, but kids want to do things. 53:33 Kids really, really want to, right? 53:35 They wanna be helpful. 53:36 So we need to give them the opportunity. 53:38 And so that leads to the third thing to keep in mind, which is make a conversation with your child, right? 53:44 Say, hey, you know, you’re, you know, Michael, you’re seven years old now. 53:49 I want you to start setting the table. 53:50 I think you’re totally capable of helping me set the table, right? 53:54 Let’s do it together the first time, right? 53:55 And you can do it with them and scaffold it, right? 53:58 Let’s do it together and let’s see how it goes, right? 54:01 And then, you know, maybe it’s next time and they did great. 54:03 Next time you say, oh, I do it on your own, or whatever it is, right? 54:07 But I think that scaffolding piece, the talking to them about it and navigating it together is another big thing that can be helpful. 54:15 So we have another question which is, why should I reward my kids for doing what I’m asking them to do? 54:23 Isn’t that just bribing them? 54:26 Ah, that was a question that we were taught how to answer in graduate school all those years ago. 54:33 And a little bit, yes. 54:35 So here’s the thing, so starting point, right? 54:37 I think depending on how you do this and when you start and everything matters And you don’t need to bribe them or reward them for everything. 54:46 But here’s the thing. 54:53 We go to work, and hopefully we like our work. 54:56 I like my work. 54:58 I wouldn’t do it if I weren’t getting paid. 55:00 And I genuinely like what I do. 55:02 And there are things that I do that I don’t get paid for. 55:05 But overall, I would not do my job if I didn’t get paid. 55:09 And I think it’s important to think about that in a similar way. 55:13 If there are things that you want your child to do that is important to you, it makes sense to give them a reward for it. 55:21 Not every kid needs that. 55:23 A lot of kids will just do it because you ask. 55:26 This is for the thing that they’re not doing just because you ask. 55:29 And then you have to ask yourself, do you want to fight them about it? 55:33 Your options are, if you don’t reward them, your options are going to be to punish them if they don’t do it or have back and forth fighting with them. 55:41 And those are your options, right? 55:43 If your child is not doing it. 55:45 And I think out of all those options, rewarding them is the best and the best for you and the best for them and the best for the family, typically. 55:53 So yeah, I hope that answers that question. 55:55 But yeah, it could be bribing, but I’m okay with bribing kids. 56:01 We bribe each other as adults and ourselves as adults all the time, right? 56:06 How often do you use, you know, do we have adults sometimes that say, well, we’re gonna have that piece of cake, only after we have the salad or something, right? That’s a bribe too, right? 56:14 We do it because it works. So I’m okay with bribing kids. 56:20 Okay, so before we hop into the verbal questions, where I will be unmuting the audience, we are going to, well, let me backtrack. 56:30 So before we stop the recording for those verbal questions, for those watching the recorded version of this, which would be at 2 p.m. Thank you so much for attending. 56:39 Please complete the exit survey and archive recording of this webinar will be posted to our website njcts.org under the programs tab. 56:48 The blog is now open and accessible under the archive webinar. 56:52 All questions submitted during the recorded viewing will be posted there. 56:56 This blog will stay open and monitored until Tuesday, May 28th. 57:00 Any personal information will not be included. 57:02 Our next presentation will be divorce support, Nurturing Children Through Change presented by Dr. Justin Miserel. 57:10 It is scheduled for Wednesday, June 19th, 2024 at 7 p.m. 57:15 Eastern Standard Time with the recording the following day, Thursday, June 20th at 2 p.m. Eastern Standard Time. 57:22 We offer professional development certificates for school professionals and school nurses that attend the live or recording of the webinar. 57:30 To for either time, please visit njcts.org slash webinars and with that I am going to stop the recording.