A Teen Advocate for Tourette SyndromeUpdated: Dec 1
Avery, a teenager with Tourette Syndrome, speaks out about the disease and how she lives with it on a daily basis. Avery has been a Tourette Ambassador for the Tourette Association of America for two years. She educates kids via zoom, however will start in person when the pandemic is over.
Host Speaker 0:38
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Hi, everyone, welcome. I’m Jamie Lord Tovar, and I’m now here with Avery. How’re you doing today? I’m doing good. How are you? I’m pretty good. Thank you. So we were talking with your mom about Tourette Syndrome earlier. So can you tell us your connection with with Tourette community?
I am a Tourette ambassador for the Association of America. And I’ve been a youth ambassador for about two years now. Um, and I just tell people about Tourette syndrome and what it’s like to live with it. Oh really? So do you go like to different schools? Or how do you tell people about Tourette Syndrome? Uh, mostly through zooms right now since the pandemic we’ve been doing zoom meetings with classrooms of kids, with parents, teachers, like new parents, of kids with Tourette Syndrome.
Kind of like everybody, I’ve done meetings with Girl Scout troops. It’s kind of everything but once the pandemic is over, I’m gonna start doing in person. Okay, so do you feel like is it kind of nerve wracking to do to speak to others over zoom? Or which do you prefer Do you prefer like in person or you can zoom personally for my like, The nerve of it, I prefer over zoom. But for information education wise, I would prefer in person because I feel like it’s easier to get my point across when I can actually see them and they can see me and I think it also over zoom. They can’t see me very well. And I want to be able to see that for them to see me ticking so in person, they’ll be able to see an actual, like example. Oh, right, right. Yeah, cuz cuz it’s not just all from because when you’re doing your, your zoom, and I would assume like we’re doing right now or it’s mainly just a headshot. So yeah, the full effect. Yeah, exactly.
That makes sense. That makes sense. So your mom said the year you go to high school? What high school do you go to?
I go to an independent study school in Fair Oaks. Called Meraki High School. Okay, it’s lesser known, there’s not a lot of people that go there. We have like, a little over 100 students this year. And we have a few teachers who each teach one subject. So I’m really flexible right now. We’re kind of like in person and at home work right now. Because during the pandemic, they found that people actually thrived while working from home so they let people work from home and that’s cool now but nice. Yeah.
That’s cool. Yeah, I’ve, you know, in my experience, I found kind of either it works for works for a lot of people. It doesn’t always work for people. But yeah, I mean, it is. It’s great.
We’ve all discovered this format, I guess. Yeah.
So um, so what is like a typical day of school like for you. So I guess you could tell me like, how it is on doing it virtually, and then also in person.
So since we can work either in person or at home, it depends on like how I’m feeling in the morning, whether I’m going to go to school or not. School technically starts at 9am. But students can show up whenever they want.
It’s just whatever feels comfortable for you. And whatever, you know, we’ll be successful for you, they want you to do that. So sometimes I work from home, sometimes I go into school, when I do go to school, I go in, I have to sign in to just Google Forms just to let them know that I’m there where I’m working. And I brought my own chair to school because the chairs at my school, I can’t really sit in them for long periods of time without having to leave and getting uncomfortable. So I asked if I could bring my own chair. And they said, Yes. So I brought a chair that’s comfortable for me that I sit in for long periods of time. And I have a sign on it that says off limits due to COVID for Avery only.
And so I sit there when I need to work. And that’s kind of like my area. And it’s right next to this fish tank that we’re going to be working on, which is exciting, because it’s gonna be a nice soothing area. And that’s why they chose to seat me there.
But I put in my headphones, and I just work on anything that I have going on. We don’t have like, actual classes. So you don’t have to go in anywhere you can just, it’s all of our work is online. So we go online, and we’ll do work at school. But it’s we can do it from home too. But if I want to, you know, feel like I’m actually like, participating more than I’ll go to school and also to get me in the habit for when I go to college, since I’m a senior.
Oh, yeah. So do you. Excuse me? So do you know where you’re going to go to college yet? Have you? Have you decided?
Yeah, I want to go to a community college. To get my academics out of the way. I’m planning on going to ARC because I already have an a student account with them, because I did a community college class a few years back. Um, but I’m gonna go there for about two years. And then I’m thinking of moving to a four year college to get my degree in graphic design.
Oh, great. That’s, that’s a really good plan. I, I, I highly recommend the California Community Colleges, I’ve been to a couple and they’re really great. And it’s, it’s really great. I grew up in a small town. And so my, my class was not much bigger than yours. My, my graduating class was 148 people. So right. So so I think that that’s a really good plan for you is to start because they’re, you’re just, they’re just wanting your to succeed. So I mean, really, like sometimes big universities, it’s kind of scary, and they feels like they don’t want you so much to succeed. It’s just like, okay, sink or swim, but community colleges like, Okay, we’re going to help you, you know, to succeed, which so, so great. So graphic design. So my mom said that you were an artist. So do you do graphic design and other types of mediums, or
Um, I started out like, with, like physical stuff like painting on canvases and paper and sketching. But I recently got an iPad, and I’ve been working with digital art, which is really fun, because it gives you so much more options. And you can do so much more and explore a lot of different like, types of art. Like I learned how to create like business cards, and that’s really fun, like designing things and super fun. designing logos. creating websites is also really fun, you can do all of that. And I really want to get a job in like just creating people’s businesses and brands and like creating art for people’s brands or whatever. Because that’s something I can do from home. But I want to get my degree not so I can you know, do art as a living that I think that would work out really well for me, right? Yeah, that was that would be great.
I’m jealous. I always wanted to do that. But I just didn’t have the drive to, to continue to promote myself, you know, with my artwork and I guess, you know, we don’t always have the just the confidence, I guess, you know, so I’m sure you can relate as an artist that sometimes it’s like, I don’t know if my stuff is that great.
So what really helps is my teachers, I they always see my art and stuff so they know what I’m capable of and they always preach for me and they always show examples of my work which kind of helps a lot when I soldier so they kind of exposed for me but I do need to learn how to expose myself because I can’t have other people doing the exposure but
Well, I mean, you know, you become a, you know, famous artists then you can have your assistant can go out and promote you as something.
Yeah, my mom’s my manager basically.
Oh, hey, nothing wrong with that.
So you said that you that you have some of your teachers promote your work and things at school, is there anybody else that you would turn to for? For guidance at school?
Yeah, I would basically turn to any of my teachers, since there aren’t a lot of teachers, they can really get really good one on one connections with the students. So I’m, like very close with all my teachers. And they all know my situation. They know like, my accommodations, anything that I would need, and they always tell me to feel free to come to them if I have any problems. And they’re always reaching out and asking if I needed anything, which because they know that I have a problem reaching out and asking for things, which is really cool. But they’re always asking me about my Tourette’s asked me what’s going on in my life, like, asking me about my family, asking if there anything, there’s anything I need anything new. And then if there is anything new, they’re like, oh, I don’t know about this, can you like explain so I can help you in the future. And I think I’m so blessed to have such a good support system out of school, like, I went to public school for a month, and it was horrible. The support is there to even have a support system there. There was no support system there. The teachers didn’t understand that the students didn’t understand. But
that’s because they didn’t want to understand that they didn’t care. But my teachers and the kids there, they all really care. I kind of have a support system everywhere, which is really great.
That’s awesome. That’s really good. So are there other other students there that have similar diagnosis? Or you or is it?
There’s independent study a school is mostly like there’s a lot of kids there that can’t be in traditional public schools. So there’s a lot of kids with disabilities like autism, Asperger’s seen kids with tics. I know kids with ticks, Kid kids with like seizure disorders, just things where they need special accommodations that they can’t get it normal schools, so or normal schools, but it’s kind of everybody there has like, their own things that they have to deal with. So there’s like no judgment there at all.
Yeah, I was gonna ask you, so how do the kids treat you at school? But yeah, you’re just one of you.
I’m just one of them. You know, it’s kind of the same there, we all have our little differences, like we are different than other schools, because other schools, they have the curriculum for one type of student. And if you don’t follow that curriculum, then you’re going to fall behind, but our school has curriculums for different types of learning and different, like, passions and stuff. And they work with your passions to get credit, which is really cool. Like, I get a lot of credit for stuff when I do art.
Nice, that’s really good. Because I mean, that’s, that’s your your passion. And that’s what you need to get experience in. So that’s, it’s really good that you’re able to start, you know, working on that at a young age. That’s really good. That’s awesome.
So how about outside of school? Who do you go to you send your mom’s your manager, of course.
Um, my family is super, super supportive. Honestly, since the diagnosis, we bought gotten so much better at communicating with one another, like, even without, like, besides me, they’ve gotten better at communicating their issues with one another, because we had to learn to adapt to a big change. But they’ve been so supportive. I feel so lucky. Like, I don’t know how lucky I got with like, this amazing supportive family that like will do anything for me. And my friends, too. I’ve really supportive friends who I can talk to they don’t have Tourette so they don’t really understand but they’re willing to listen to me and they’re willing to be like, Oh, that sucks. I’m sorry. You feel that way. You want to go like, do something to make you feel better, you know? But my parents are always asking you like, Hey, you feel okay. How are you feeling today? Is there anything I can do for you? Which is really great. But it took some time to learn but I think we’re pretty much a lot closer since the diagnosis. So I feel like I have a pretty good support system everywhere I look which I feel lucky for.
That’s really good. So you can see there’s there’s been some some good things that have come out of, of your diagnosis. That’s
Definitely. Yeah, I definitely see a lot of like, changes have gone around, especially like with me, I feel like I’m a lot better at speaking like about things that I care about, like public speaking and stuff. My teachers have told me that they’ve seen my public speaking skills get so much better from when I was in freshman year. I once cried on stage because I was so nervous and I was saying my life and I started solving all of a sudden, and I had to leave. And I was like, like, that’s how I am. I hated public speaking, it was the worst. I could never see myself public speaking. And then I went to my neurologist, and he diagnosed me and he thought that I would be a good youth ambassador, he, he kind of offered like, Hey, you should be a youth ambassador for the Tourette Association of America. And I asked him what it was. And he said, Oh, it’s just like speaking about Tourette’s publicly. And I immediately shut it down. I said, No, thank you. I didn’t think I was ever going to do that. And then I went to Tourette camp. And I met so many people with Tourette syndrome. And I think it also really, like helped me accept myself a little bit more. And I think once that I had accepted my like new life, basically, it helped me want to advocate and it made me want to teach people because I knew that there was a lot of stigma stigmatization around Tourette syndrome, a lot of like, bad blood with people with Tourette Syndrome, like it’s not well known. And there’s a lot of like, just stigmatization about it. And that made me feel motivated to present and speak about it, even if I didn’t fully feel comfortable with it. But as I’ve gotten to do it more, it’s gotten a lot easier. So I definitely think that a lot of good things have come from my diagnosis.
Yeah, see, so you can also have a career as you know, going around the country and teaching others about Tourette Syndrome. See, you already have to You’re not even out of high school. Now, I already have two careers lined up for you
Yes, I try to just get ahead in life.
That’s great. I mean, I can, you know, for just your self esteem to be able to talk in public because that is one of the most difficult things to do. You know, I mean, it’s, I think most people, especially early on, you just, it’s really difficult. Yeah. But also, I think what helps is, I like kind of got diagnosed at a really early age, I got diagnosed freshman year. And then I’ve had Tourette’s my entire life, we just didn’t know. So we kind of knew who I was aside from the Tourette’s. So with that kind of helped me, like I had already, like, kind of figured myself out before I got diagnosed. And so I knew who I was, aside from the disability. And so that really, I think it helped me accept it a little bit more. Because I was already I had already shaped into a pretty positive person. So I feel like if I had gotten diagnosed, and it had been as bad as it was set from a young age, I wouldn’t be the person that I am today. So I think I really lucked out there.
But it also means that I’ve been suppressing my entire life. So I have to tell myself to not suppress and I have to kind of force myself to take when I’m feeling comfortable.
Interesting. So So you were you think you’ve just been suppressing and it wasn’t just as you as you’ve gotten older, and like maybe you have more stressors or things like that it was just,
It’s both. I know, I’ve been suppressing since I was young, because I came to this realization after I got diagnosed, and I realized what it felt like, I’ve always I know that I’ve always felt the urges and I thought, everyone had those urges. And I thought everybody suppressed them. So that’s what I did. And I thought that was normal. So I did that up until I was like, 14. And then I realized that it wasn’t a thing that everybody has to deal with. And then the big stressor that kind of brought on the diagnosis was my brother leaving to boot camp. And I had this neck tick that like, was going on all day. And it felt a lot like it kind of felt similar, but not exactly the same as the tics that I had when I was younger, because I was diagnosed with the transient motor tics. And I was young because I had minor facial tics, but not enough to get a Tourette diagnosis.
But then we realized after I got diagnosed, and we started figuring Tourette’s out and figuring out like, what’s going on with me, we started noticing and connecting things to when I was younger, like, we have this family photo that I’ve always hated. Because I was doing something weird. I was doing this with my hand, and I was holding my dog and I realized that that was a tech so I’m not embarrassed of the photo anymore. Like I used to be like, Why was I doing that? That’s so weird. I was such a weird kid. And now I realize okay, I don’t feel weird about it anymore. But like I was connect to like, I would say, letters under my breath. I’m like, and like, you know, like, kind of under my breath. My mom would tell me that she would hear me doing these things. She’d be like, whatever weird kid, you know. Or I would repeat things under my breath that I would hear or say. Like, just these little tics that I thought were normal. My mom thought they were normal because my brother had them, but he grew out of them. That’s the difference. I didn’t.
But he also has like ADD and anxiety and stuff. So we both got different ends of the same stick, I think,
Right? So you don’t have anxiety?
Oh, I do. Yeah.
You do just not as not as bad as ADHD and and anxiety.
I do have ADHD, anxiety. I have ADHD, anxiety, depression, Tourette syndrome, and OCD and anger issues.
Yeah, the anger issues are kind of new. I’ve never been an angry person. But now I am kind of an angry person, I kind of get angry very easily, and things set me off easily. But they’re all OCD related. So that’s kinda
So if you if your pattern gets met met, like messed up or your schedule or something that that will, that will be your trigger.
Yeah, I have a big things with expectations and schedules. Like, if I set an expectation, even if it’s the smallest expectation, that means nothing in it gets doesn’t get mad that I just get so angry for no reason. And then I get angry at myself for being angry because I don’t want to be angry, and there’s no reason for me to be mad. But then it just kind of spiraled from there.
And that’s the OCD. And that like, I’m just like, always hyper aware of like my surroundings. And that’s the OCD and then I get angry. If I see something in a certain place, and I don’t want it there. Yeah.
Just irrational things, irrational anger.
And then so how do you deal with that?
I’m actually working with a therapist. I just went to a therapy appointment yesterday for a new therapist who’s going to help me with that. So we’re figuring that out right now.
Okay. All right. Well, that’s good. That’s good. You gonna have some help with that
as the next thing.
So your mom said that you’re a big animal lover too. Is that right?
Yes. I have a dog. Who kind of dog and a hamster. Yes.
Your that the dog is older than the hamsters.
She’s almost two.
Is that old for a hamster?
Yeah, about hamsters, like super old is like three years old. Okay. Okay, so she’s pretty old. But my dog, Toby. He’s really sweet. He’s a big dog. We got him when I was nine. So we got him before I was diagnosed. But he is so good at helping me through my ticket tax and like whenever I’m having a hard time, he knows like he can sense like, if I’m sitting in a recliner chair, and he’s sitting on the opposite end of the couch, if I start like ticking or feeling comfortable, I feel like he can sense it. And he moves to the other side of the couch closer to me. And he just, he’s so sweet. And then sometimes if I’m like, having a really bad tic attack, and I’m like, you know, spasming and like, like, bending my body, he’ll lay on me and he’ll put pressure on me and he’ll lick my face and distract me. He’s a really good boy. He knows.
Oh, that’s so sweet. What kind of dog is he?
He’s a black lab mix. We think he’s mixed with a pitbull because he’s kind of short. But he’s also really long like a black lab, but he has like Pitbull legs, but he’s boy ever and we love him so much.
That’s a great mix for service dogs.
Labradors. I love them.
They’re both really smart and very loyal.
Pits used to be nanny dogs, right? It’s so much sweet in their big heads. Yeah. The big head like a pitbull, too. That’s yeah.
Oh, I could go on and on. We better stop. Oh, yeah, no.
Totally off subject all day.
Another time, we’ll have to talk about the time.
Oh, Dog podcast. Oh, yeah. There we go. That next one? Yeah. I like it. Yes.
Okay, so, um, let’s see.
We’ve gone over, I think most of the questions. So who are your biggest role models?
Oh, that’s a really good question.
I feel like one of my biggest role models right now. Probably my teacher John. I think I don’t know he. He really just..He doesn’t get Tourette’s, but I feel like he understands me like he doesn’t. He’s not like a Tourette expert. But like, I feel like he definitely understands me. And he’s just so cool and laid back. And he knows how to like. He’s not strict, but he knows how to get people to take order from him, you know. And like, all the students love him. He’s just so laid back. He’s so cool. He plays like every instrument known to man, he makes stuff. He’s a huge artist, so talented. I want to be like him. When I’m older. I want to be able to like, you know, because he’s always he’s always doing stuff. He’s always making things. He’s always fixing things. He’s always like creating, and I just love that I want to do that when I’m older. I want to do whatever it was. And he teaches while he does it, and I really like that. Oh, wow, that sounds amazing. But also, I think, another role model model or my parents. They’re totally complete opposites. But they’re opposites in which they complement each other. So like, my dad’s super chill, laid back, he doesn’t worry about anything. And my mom’s super uptight phrase, but everything’s super anxious. But like, he calms her down, but she also gets a movie when he needs to do stuff, because he’ll get forgetful, who like, who’d like oh, we can do it another day? Oh, student another day? Oh, don’t worry about it. And my mom’s like, What are you talking about? That’s crazy.
And so they kind of even each other out, and I and I look up to the relationship, I think I think they have such an amazing relationship. They’ve been through like a lot together. And they’ve just stuck through it. Like they could have given up so many times, but they kept going to therapy, because they just loved each other so much. And now they their relationship was so strong. And I just really look up to them and their bond, I think,
Oh, that’s awesome. That’s really nice.
I want to have what they have when I’m older.
Yeah, nice. Well, hopefully, I’m gonna I’m gonna think good thoughts for you. That that that will happen.
Yeah. Thank you.
So do you have any advice for others who may be struggling with having Tourette’s or some other diagnosis that that limits some of their abilities?
Yeah. Just like life altering abilities. i My advice is just really like, be upfront and be honest about like, what’s going on with you and be honest about with people who are close to you. And honestly, just trying to find people who has like a good support system. So that you always have someone to rely on because we’re going through something like this alone is. So just, I don’t want anyone to go through this alone. And I feel like having a really good support system and letting your support system know what you need. And being really upfront and honest about how you’re feeling really helps. That’s what helped me I had to learn that like, like, it’s been really hard for me to be upfront with what I need, and tell people what I need, because I don’t want to be like a burden or anything. But I have to get that thought out of my head. I living with this. It’s not my fault. It’s not anyone’s fault. And it’s just how life is. And if people aren’t going to honor that, then they’re not for you. And they’re not your support system. And you got to find people who support you for who you are.
That’s very true. That’s good advice. So when you meet somebody new, like how soon into like a conversation, when you meet somebody new, they’re like, Oh, do you? Are you like, by the way I have Tourette’s? So if I start ticking, or do you just like, Wait till something happens? How does that go? When you meet like a stranger?
To kind of wait until something happens? Usually, um, when I meet a stranger, like, I usually do, like random like, takes, like, when I was young, I would like blink a lot. And people be like, Why are you blinking? Like, oh, it’s a tick, and you’re like, okay, but like it, I probably wait until I tick.
I’ve ever like when I went to school, I was wondering how I would do that. But then in class, my teacher John said, Alright, go around the class and say one thing about yourself that you want people to know, I was like, Well, I guess it’s my chance to tell people I guess. So maybe wait until the opportunity arises? I don’t know.
That’s my personal like, my personal opinion. But also if I’m around my friends, they will tell everybody right away. Oh, really? Oh, by the way, don’t be mean. They don’t need to know that they’re fine.
I would think that would be a little embarrassing. It’s like wait, we don’t you know, I might not have anything that happens while we’re interacting with this person. Why do they need to know?
But also I know it’s in such like they’re it’s like out of the goodness of their hearts because they learned to protect me and they want and they also all my friends told me that after I got diagnosed and after I told them about it. They started advocating to their friends about it. And they started advocating to other people not teaching people and they love and they’re like, I get so excited when I get to talk about Tourette’s because I get to like reference you and I get to talk from experience and I’m like, Oh my god. That makes me so happy.
Oh my god, it gives me chills just to hear
My older brother, he was in nursing school. And he was they were doing this presentation on a certain topic. And he chose Tourette’s. And he literally just spoke the entire presentation off the top of his head. And he said, it went so well, because I just referenced you the whole time. And I just talked about our experiences together. And it makes me so happy that I can help people spread awareness because I realized that it’s not just coming from me, it’s coming from the people that I talked to you also.
Right? Yeah. See how how positively you have affected? Many people. Yeah, that’s, that’s really amazing. That’s gonna be a really great feeling
Yeah, it makes me really happy that my friends are the type of people who want to talk about something that they want to help me with. Yeah. And they’re always like, Oh, my God, it makes me so sad how Tourette’s is so stigmatized and how there’s so many like, like, misinformation about it. And I just want to tell people that they’re wrong and people like, and they’ll totally just go off on people who make like, Tourette jokes like, oh, they probably have Tourette’s. Like when they customed. Like, that’s not funny. That’s not what Tourette’s is. And they will go off on them. And they tell me, they’re like, I’m so mad. You’re to talk to them. And I’m like, Oh, my gosh, you guys. Great.
That is so cool. That is so cool.
All right. So is there is there anything else that you’d like to share with with the community that you want people to know?
Well, I get all my information from Tourette association.org. Okay. So if anybody wants to see anything, or read anything that I didn’t mention, which there’s a lot of stuff that I couldn’t mention, I definitely recommend going to their website. All right. All right. Sounds good.
Well, I really appreciate you taking the time to talk with me today.
I appreciate you having us. It’s very fun. I’m really glad I got
I’ve learned a lot I thought I knew something about Tourette Syndrome before I get started, but now I know quite a bit more. So thank you.
Great. That’s happy and that makes me happy.
Good. I’m so glad.
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