Ep 5 - Candid Convos: Tourette Syndrome - Struggling with Stigma, Seeking Support

Speaker A [00:00:00]:

IRA, welcome back, man. Long time no see. Yeah, I know it's been a few weeks, man. What's been up? It's been a long three weeks. The irony in this, man, is that I think the last episode we talked about the power of simplicity and consistency being our superpower, and here we are three weeks later. I take complete fault of this, though. I had a nightmare three weeks that really set back my life. I can't talk about it right now due to legal reason ins, but everything's going good now.

Speaker A [00:00:26]:

But we're back, man. So glad to have you here. Well, let's just be a little clear. It's not like you got arrested or anything, but it's other things that are outside of your control. We cannot talk about, deny, or confirm that right now. But yes, it is a lot of things outside of my control that really set me back. I was just a nightworth mare three weeks. The worst things that could happen to me have happened all consistently, and you're privy to those, and maybe someday I can talk about them on here.

Speaker A [00:00:53]:

But, yeah, I wanted to come back because I want to really talk about something special today that I think deserves a lot of attention, not only just to raise awareness, but I think to give it a fair voice that I think it deserves. And it's very relevant. And we wanted to do this a couple of weeks ago, but do you want to take a lead hour and explain what we're going to talk about today? Yeah, so I'm personally really excited about this because it's near and dear to my heart. So May 15 to June 15 is a period of time that is considered tret's Awareness Month. And it's near and dear to my heart because I have a son. He is ten years old and he's living with Tourette. And I think it's a fairly misunderstood diagnosis and disorder. And I don't know if there's enough conversation out there about it just to kind of get people educated on what it is and what it means.

Speaker A [00:01:45]:

And not only from a syndrome perspective or affecting the person itself. But one of the things that I like to do is talk about it from a parent's perspective and how you deal with that, because it can be a challenge. There's lots of things that are challenges in life, but it's definitely a unique one. So, yeah, it's near and dear to my heart, for sure. Yeah. And I think we'll start with a big disclaimer that we are not doctors. We do not pretend to play doctors on the Internet, maybe in the comments under anonymous accounts from time to time, but no, all serious. No, we're not doctors.

Speaker A [00:02:16]:

So this is really from our perspective and for myself even as well, sharing something a little bit more personal. I actually researched this a lot because one of my kids, we had at one point had thought that this could have been a pathway that we had to explore because of a nervous tick. And I actually have some nervous ticks as well. Not that I get nervous, it just happens sometimes. I get super stressed or something like that. I never noticed it. It doesn't affect my life in any way, shape or form. My wife kind of comments sometimes on it and that's essentially what it ended up being with her.

Speaker A [00:02:48]:

But we went down this pathway and there was a lot of interesting things that I discovered throughout that journey. And especially as a parent, I think we get so wrapped up in the day to day activities of work, and sometimes everybody's dealing with their own issues at home. And it's not even issues as much as sometimes it's gifts. And there's a lot of positivity that comes from this from all angles and perspectives. And that's really what I want to focus on shining some light on here today. So I'll just throw some questions out for you and if you're not comfortable answering them, feel free to pass or throw the ball back in my court. But can you just give us a real high level overview of what Tourette's syndrome actually is? Yeah, I will define it, how it is clinically right, and it actually can vary in some places. But high level Tourette is really a diagnosis that combines two core things.

Speaker A [00:03:41]:

There's at least one motor tick and one vocal tick that happen for the course of one year. And they're not necessarily consistent, but they can't be explained by other things like nervousness, like you said, or other kind of things that could be influencing it. It's just kind of naturally happening. And that happens for a period of one year for people under the age of 18 is typically what the technical diagnosis is. Now, I am not one to say that it's hard and fast to the timeline or even the number of the things because there are other things like chronic tick disorder and these types of things that are very closely paralleled. But the technical diagnosis of Tourette is actually fairly rare, where chronic tick disorder and these other things are definitely more common, but still fairly rare, where that's just you have ticks and they can wax and wane just like anything else. But yeah, the diagnosis of Tourette is one or more both vocal and motor ticks for a course of one year with waxing and waning and it can't be explained in other ways and then you end up with the Trek diagnosis. And that's very similar to what we had heard.

Speaker A [00:04:55]:

I think the big takeaway there is that it is hard to diagnose it. When we went through some of the situations and talked with some specialists, that was one of the key takeaways was, hey, we just kind of have to sit and wait. And as a parent, that's disheartening to hear. But one of the calming things that I kind of always reflected back on was I said, if they say and give it an official diagnosis, it doesn't really change anything in terms of what's happening in the present. And for me, I always looked at it as, yeah, I'm aware I have some probably some ticks that flare ups from time to times, or I some do some things. I have a lot of sensory things that my wife probably considers some tics and so forth. But I say, hey, it doesn't affect me, so I don't really care if it affects the world, their perception of it, because I was kind of going about my own life here. And I think from a children's or a kids perspective, it does have different layers of, I guess we'll call it complexity in different environments.

Speaker A [00:05:49]:

For example, my daughters are a little bit younger than your son, and so they don't really understand what's going on yet. And so in that your son, what have you found in relation to this? What were the first signs that you recognized? How did that really evolve to the point where you said, hey, this might be something worth exploring? Yeah, that's a good question. So for us, with my son, it was definitely we noticed it, right? So the physical ticks were fairly noticeable. It was twitching and lots of different types of movements. And then there was the audio ticks or audible ticks, where I think there's a common concept or perception of Tourette. And I think just in everywhere that it's like people, like shouting obscenities or these kind of things. And there is a version of it that is that but that is even a fairly rare version of Tourette, but he would just make different sounds, like, just literally like a boo or whatever else. That was uncontrolled, and he didn't know that he was doing it.

Speaker A [00:06:56]:

So that's really what brought us on, to kind of take a look at it. And then, yeah, like you said, you kind of go to people about it, and it's hard to diagnose, it's hard to find people that really know a lot about it. And there's a lot of unknowns about this whole thing. And the crazy thing is, it's not uncommon for kids to have ticks and grow out of them. Okay? So if you're out here and you're listening to this and your child is making movements or making sounds, it doesn't mean they instantly have this. They may do this for weeks, months, several months, and then go away. And that's fine. The problem is when it goes on for a longer period of time, like I said, clinically it's a year, but it's just a longer period of time that it becomes a lifelong thing.

Speaker A [00:07:40]:

By the way, it's not something that ends off a cliff. There's not any medication to just fix it. It's just something that you just have to kind of deal with, and it's okay. And it's something to kind of embrace more than anything else. But yeah, that's kind of how it goes about. Yeah, I think one of the things that I discovered early on is that it's great that we have this awareness month, right? But I don't think it should stop and start at just a month, which is one of the reasons I wanted to record this podcast on this specific topic, because I think people can discover this at any given time. And even if there's one person listening, that this helps in one way in particular, whether it's something that we say or us even just being vulnerable, talking about this stuff that helps them, this makes the whole journey worth it in and of itself. And I think that as a parent, when you're going through a lot of this stuff, we do tend to bottle it up and feel very vulnerable about it.

Speaker A [00:08:35]:

And as humans in nature, I just think that we tend to generally have a sense of discomfort talking about this type of stuff. And I think it was whenever you originally posted on Facebook about this a while back that I actually was like, hey, IRA, I want to talk to you about this, because I'm actually dealing with some stuff myself here. I had not known that, and had I known that, I probably would have reached out to you prior because I think we actually seek community, but we're so caught up in the medical, I don't even know what the term would be for it. You're kind of boxed in. You're searching for answers, you're not getting answers. It's very much a sit and wait and see kind of game. And it is hard, it's hard to talk about this openly out of fear of are people going to judge you? Are people going to look at you differently? Are they even going to understand what you're going through? And what I found through the journey is it's part of life. It can be a blessing.

Speaker A [00:09:31]:

Your son, specifically. IRA, what are some of these positive things that you've really taken away from going through this journey? And is there anything specifically unique that you find that really makes him unique from this as well? Yeah, there definitely are some things that I think if you sort it positively, that there are. But I do want to take one step back because I think this is important from what you just said about this diagnosis. And these types of things is look, Tourette or the chronic tick disorders, these types of things, they are very hard to diagnose. And one of the big challenges is, like I said, it manifests itself in kids, right? So you have a pediatrician, and then when you go to try to get a diagnosis, a lot of cases the pediatrician won't diagnose it. So then you have to go to a neurologist or a psychologist, and they don't necessarily both know or either one of them would know this particular neurological condition because it's a little unique, it's a little newer as far as evidence is concerned and people researching it. So one of the reasons I wanted to do this podcast and I was really excited that you brought it up, was to your point, right? So community is key. I just got back from Patsa, which is the Pennsylvania Alliance for the Tourette Syndrome and it was a group of community that got together and we had chats about this.

Speaker A [00:10:51]:

And as a dad of someone with Tourette's, I just want to let you know that there are people out here to talk. So if anybody has a question, whatever else reach out. In a lot of cases it's true that there's a lot of women caretakers and they typically take a lot of this on and there's community there and men as fathers were here too, and there's challenges along the way. So I'm here if anybody want to reach out. I can give you my contact information at the end of this podcast. But that was one of the key things I wanted to do here. Now to your question. So the challenges of Tourette, and then I'll get to the positives, is it's not just the ticks.

Speaker A [00:11:28]:

The ticks are one part of it and honestly, they're just the thing. They can be harsh to a person and can actually cause harm depending on how severe the ticks are. In a lot of cases they're not so severe that they're actually causing you physically harm, like twitching and hurting your neck or picking and these kind of things. But they can in a lot of cases, though, it is extremely common that there's way more underlying things. OCD, anxiety, explosive rage, countless other things that come along with the Tourette. And the Tourette is more of like the surface level of an iceberg and then there's this mountain of stuff underneath the learning disabilities dysgraphia and that's where the challenges are and really start to mount up. Now to get to your positive question, because I do think there is a positive element of this is people, kids, individuals that have this disorder because they're faced with so many challenges. Maybe ridiculed because of the way that they're reacting, this ticks and the way people look at them.

Speaker A [00:12:27]:

Maybe people make fun of them because it happens. They're riddled with the anxiety or the OCD and they have to deal with these kinds of things. There's all different types of things that can happen from that. You can become a recluse and kind of bottle it all up. But like in my son, he is one of the most empathetic people that I know and I think it has to do with just him dealing with so much. It could just be the way he is and it never would have happened that way. But he plays baseball and of course everybody chatters a little bit in baseball but I don't know, it's just something the way comes across, the way he feels, the way he presents a feeling towards others of, well, hey, it's okay, no big deal, we'll try it next time. These kind of things, there are these positive elements of, I think the way that he interacts in these faces of adversity for others that I don't see a lot of other kids his age doing so.

Speaker A [00:13:14]:

Is that a direct result of this? I don't know. But it's something I definitely really notice and it's something that I would say is something that could be a positive of this, of just facing these challenges early on and knowing how to overcome them, learning how to overcome them, understanding that others may have problems too, and just being more generally understanding. When you think of it from the standpoint of there's individuals out there that might have children as well. How would you recommend those parents approach the situation if they might think that they notice something that could lead them down this pathway? What advice would you give to those parents as far as have you found a good process to take or is there things that maybe they shouldn't do because it could actually make things worse? What insight do you have on that? Yeah, I don't think you can make anything worse. You also can't instantly improve anything. It's more learning and to understand how to deal with it and cope with it. And if you think that there's a challenge, like we said in the beginning, I'm not a medical professional. I've been dealing with this for, I think I'm going on three years now, so I'm still learning along the way.

Speaker A [00:14:16]:

But it's take notice. And if you do see things that are repetitive in nature, things that look like ticks, head movements, eye blinking sounds, all these kind of things, have a conversation with your doctor and see what their thoughts are. Also know that you need to stand up for your kid as well. There are some doctors that will definitely look into it and move it forward. Others that will kind of shut it down and just say that's kids being kids. To be clear, that could be because ticks are not uncommon in kids. It's the length of the tick or the ticks that becomes the challenge and starting to really look into it and kind of like what it's all about. But it really comes down to having those conversations with your doctors.

Speaker A [00:15:03]:

Have you noticed that there are certain environments or triggers that tend to start making the tourette's more visible or a little bit more frequent than previous? And the reason I asked that is that in our specific situation, it was just due to a lot of change and a lot of stress, and we could almost predict when those things would actually we could usually figure even now. So there's some ticks from time to time and we will understand what's causing those? Do you find that there's anything like that? And if so, how do you approach actually trying to reduce that situation as much as possible? Yeah, so I would say that in general, everybody's different. But in my situation, and what I understand of a lot of other situation is that it's not necessarily situationally based. They will just be there now, they wax and wane. So there could be long periods of time where there is absolutely nothing and then there could be periods of time that it's really bad and then there are definitely factors that can increase the severity of it. So typically it's stressful situations, it's change, it's things being a little more dynamic and I think that plays into all those other not a medical person, but I believe that it's looking at more of those underlying things that have the brain thinking about more. The anxiety side of the situation. If there's a new situation or new changes or I travel for work, I'm traveling, these are all things that make my son feel uncomfortable.

Speaker A [00:16:39]:

And when that happens, you see the ticks present themselves more. I believe it's because he's focusing so much on this that his brain is working harder and then he's catching more of those ticks in the movements there or in his processing there that is causing it. But it waxes and wanes for whatever reason. So if you catch it at a time of heightened ticks and you have this anxiety, it goes a lot. And new ticks develop all the time, or they can develop all the time. Moves from head movements to eye blinking to my son kicks from time to time, like little bunny hop kind of things. They're just these things that happen in a lot of cases, no rhyme or reason. How do the siblings approach handling or helping with the ticks and the flares and so forth? Yeah, so honestly, the ticks are really not a big deal.

Speaker A [00:17:29]:

So everybody just kind of recognizes it. I have three boys and one daughter, and I would say my three boys all actually have some sort of tick thing going on right now. My youngest is just so young that it could just go away. My oldest, so the one that has Tourette is the middle boy. The oldest has ticks, but not Tourette's, just has some ticks and they come and go and everybody just kind of deals with it. From a tick perspective, the challenge is with the kids and not just the kids. With the parents perspective too, is these other things. So particularly with my son, is the rage that comes along with it.

Speaker A [00:18:03]:

It's the thought loops that come along with this. And they are definitely connected to this disorder. Not necessarily caused by it, but it's the iceberg principle where, okay, this is the thing that you see on the surface that ticks, right? But underneath all this other stuff, the challenges in school, because he has some learning challenges, the Dysgraphia, because he has Dysgraphia, the anxiety that builds up, and then you add in some kids making fun of you and all these other things that kind of pile up, it can definitely lead to rage. And that has been probably one of the biggest challenges that I faced in my household. Because when you have a son that is throwing stuff around, poking holes in walls, potentially hitting, being violent, all the while, he doesn't mean to do it. It's a slippery slope. And as a parent and this is one of the reasons I wanted to do this, it makes you question, are you a good parent? How are you letting this happen? But at the same time, it's not your fault either. And it's a matter of letting it play out, being stern and kind of what it is.

Speaker A [00:19:12]:

But he can't necessarily help it, although he needs to understand what he did and help correct it and see it coming on. But not lose control yourself, because I will tell you, I've absolutely lost control. When your son is going crazy and everything else, you start shouting at the top of your lungs. Guess what doesn't help? An anxiety ridden boy that's going out of control is the father yelling at him, which only perpetuates it more. But we're human. We're human. We're going through this as well at the same time as they are. Yeah.

Speaker A [00:19:42]:

And being calm and trying to take it in, which is a massive life skill in itself, can really help. And it's not necessarily fair to the other kids, and they understand that because my son may get they may perceive him as getting special treatment or being able to do something that if they did, they would get in trouble for. And they're kind of right, but it's really kind of picking your battles and trying to do the best you can as a parent. Yeah. And I think, too, the positive side here is I always try to look at the positives of this stuff and just life in general. And I do think the advancement of technology and all of these things are just happening, are putting environments in place that can make it more accessible and more enjoyable and more of a comfortable experience for children, regardless of what they're dealing with in their life. And so you've got something like virtual classrooms, I think, that if somebody feels that they're getting bullied or picked on or people are talking about them, there are some insecurities that can come with that. It's natural.

Speaker A [00:20:51]:

No one likes it, whether it's Tourette's related or whether it's the way somebody looks or dresses. Children face all these scenarios that we have to, as parents, try to try to throw them into it, but we also try to bubble them at the same time. It's always that ongoing battle that we face. I do think, though, that with all these virtual classrooms and so forth, it is opening up more options. Not to say that some kids want to go, some kids want to go to the classroom, but if there is a scenario where children are feeling like, hey, I don't like going to school because of X, Y and Z, hey, we have virtual classrooms. And I think it's even going to get to the point now where we have virtual classrooms where we could have a classroom for other students that have Tourette that's focused on really bringing out the strengths of them and putting them in the environment of where or how they actually learn the best. And so I think that is some of the positives that we have coming out here of technology and resources. And I think doing podcasts like this does help raise that awareness because again, I think that no child should ever have to go to school feeling ashamed, whether it's because of something that they do, the way they dress, the color of their skin, their ability of learning.

Speaker A [00:22:00]:

No children should have to endure that. And I think the more conversations that we can have around this topic, it's not geared towards educating the children. It's more educating the parents so that the parents can be better parents and educate their children. Because that's essentially, at the end of the day, what's going to make a lot of change and help raise awareness for this. What do you think, IRA, are some of the biggest misconceptions around this that you just wish other people would know or understand? Well, I think one of the it's a little tongue in cheek, but I believe that it's the way I thought about it before I started looking into it that people think of Tourette and they think of people shouting obscenities, like I said. And it's way more than that. It's this whole, like I said, the motor movements and the vocal pieces, but then all the underlying pieces that go along with it and understanding that it's not something that someone can just turn off. Someone explained it to me like this.

Speaker A [00:22:58]:

I think this really helps cement it in my head. I'll give you maybe two quick examples, is if you're a video game player, right, you're playing a video game, and let's say you're playing online and you're running around and all of a sudden your game freezes. And then all of a sudden, it resumes. But you have moved maybe eight steps to the right, and you're doing something entirely different than you were when you first froze. That's what's been described to me as what tourette is inside of someone's brain. Where, okay, you didn't know you did it. Or maybe you've had a rage effect or whatever else. And there's this gap between here and there that happened and you're at the other side, but you don't necessarily have knowledge or even an understanding of how you got from point A to point B, but you're now there.

Speaker A [00:23:43]:

So there's this point where your brain is just doing something and your body is acting on it without you actually knowing. And I was like, oh man. And then I think mental illness in general, which is considered, is very misunderstood. And I think as society we understand physical disabilities very, very well. And this was actually presented to me because I had a hard time getting into my head of like, why does my son keep on doing these things? He needs to stop. And it was he has a disability. And think about it like this, he can't stop because that's the way his brain is telling to do things. If his legs didn't work and you told him he needed to go to bed and he needed to go to bed upstairs and you started yelling at him because he couldn't make it up the stairs fast enough, would that be fair? And the answer is simply no, his legs didn't work.

Speaker A [00:24:34]:

He needs help getting up the steps. But from a mental standpoint, I'm doing the same thing, right? I'm asking him to do something over and over and getting frustrated that he's not doing something over and over. Frankly, he does not necessarily have the capability at that point in time to make it happen. And I think because it's not visual for us, at least for me, it had a hard time for me to understand that there is something here that is preventing something else from happening. And because I could not tangibly touch it or visually see it, I didn't necessarily understand it. So I don't know if those analogies ring home to you at all, but they were very evident to me whenever I talked about they do. And I think there's two parts there, I think. Number one, as parents, we all go to bed with guilt, at least if you have young children.

Speaker A [00:25:22]:

Did I do enough? Did I said this? I shouldn't have said that's. Just the nature of the beast. I think the second thing is a great point and I'll add to that and I think the challenge is, and this is really true, especially the younger the child, is it's really hard for children to articulate what is happening. Whereas if it's physical, it's pretty simple. They could say, well daddy, my legs aren't working. I can't walk up those stairs. Where when it's something that's mental, they might not. And if they're not aware of it because it's not causing them any physical pain or anything like that, it could be hard for them to articulate.

Speaker A [00:25:55]:

And then it comes back to the basic laws of communication. And I think it's easy for us because as parents, when we don't get the result that we're expecting, we naturally tend to try to push blame on others even though we should not do that. And I do think it's just one of those things that as parents we always have to constantly be. Working on better understanding. And that's something that you can't just fix overnight. And I think as a lot of parents who have children or they have children that are just getting diagnosed with threat syndrome or they're just going through having experienced their child, demonstrating some tics, that's something I think that we need to keep in mind is the patience and understanding that we're not going to have all the answers on day one and losing our temper at it is not going to get us the end result. And the one thing that I would add there is, and this isn't just a father thing, but I do believe that in general, fathers, and it doesn't just have to be them, have a desire to fix things. Yes, we do.

Speaker A [00:27:00]:

It's almost like what a lot of us, me included, for sure, it's what I see is my job. And when I can't fix something, frankly, I kind of feel like a failure. Not saying I should, but I do. And you can't think that way, but it's hard, it's hard to turn that off in your own brain. So this message and this outreach is as much it's probably less about the individual condition and these kind of things. I've given you the details of what it is. There's people that are way smarter on the syndrome than me, way smarter. And I could talk about this for a long time, what my thoughts, ideas, these kind of things are.

Speaker A [00:27:39]:

But seriously, the outreaches to parents, particularly to fathers out there, whatever it is, I'd love to chat with you or whatever else, if you're having challenges, think things or whatever else, because there's a lot of people that need help throughout this. And make sure you're continuing to advocate for your kid, particularly in schools and these things, because it's misunderstood and chronically understood stuff. Yes, this is just seen as kids aren't listening, kids aren't paying attention, kids aren't doing the right things, teachers aren't wrong, the school system isn't wrong. But at the same time, there is a reason that is happening and there is a disability there and it needs to be worked with within the school system. And this has been a large frustration for many people, many, many people coming out of the camp I was just at, it is across the board one of the biggest things because it managed to assess itself in kids. Kids are in schools, they're disrupting class and have challenges learning. And this creates problems in the school settings. So maybe if you're listening to this and you're experiencing at your school, just sharp this episode with them and hopefully raise some awareness.

Speaker A [00:28:45]:

There disclaimer though, we're just two dudes talking, sharing our perspective. There are experts out there that we would always recommend that you advise. However, our goal, again, just raise some awareness here, spread the word out there. Everybody in life is going through certain things. My last three weeks specifically have been an absolute nightmare and everybody is dealing with something at all times. And I think just as humans, I think it's okay to get vulnerable and seek community, seek people to talk to. And I also think it's important to start sharing and raising awareness on these things. So I really appreciate you, IRA, opening up here with me, helping shed some light on this.

Speaker A [00:29:19]:

And I know that you said for people to reach out to you if they want to chat with you about this. Are there any other resources? We'll link them in the show notes that you could share with individuals. And I have actually a really interesting year for you. Are there any children's books that you know of that specifically talk about this that might be a great resource for children to read to help understand as well? I do well, I have book recommendations, both clinical books as well as stories and these kind of things. But I got to be honest, Trevor, I don't have them off the top of my head. So what I'll do, we'll put them in the show notes. I'll follow up with this. We'll put them in the show notes for you.

Speaker A [00:29:53]:

Yeah, that'd be perfect. Awesome. Any parting messages, IRA? No, just to reach out. And I think this will probably be in the ends and those kind of things, but one of the best places to reach me is on LinkedIn Irish Sharp on there. You'll see me. I look like this on my little portrait. And all joking aside, this is a serious matter, but it's not all doom and gloom. There are great things that happen from it.

Speaker A [00:30:18]:

And just talking about it, if you feel that it's the right thing to do, reach out and I'd be glad to help out in any way that I can. It's something that's really important to me. And, yeah, I certainly don't have all the answers, but love to help where I can. Yeah. And I'll end this on the note of saying, use the example that I gave of Irene and I talk nearly every day and I did not know about this, and so he posted about it. So don't be afraid to post openly because a lot more people might actually be in your network that you can talk to about this or have experience. Was it?