The UpTic

Tourette in the Family: A Conversation with Siblings

August 06, 2024 • New Jersey Center for Tourette Syndrome and Associated Disorders • Season 2 • Episode 21

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In this episode, I have a heartfelt conversation with siblings Anna and Eric Baldwin, both of whom grew up with Tourette Syndrome (TS). Anna, a middle school math teacher, and Eric, a senior at Franklin and Marshall College, share their unique experiences of living with TS in a family where it was openly discussed and supported. We explore the dynamics of their childhood, the challenges and triumphs they faced, and how their shared experiences have shaped their lives today. Join us as we discuss the importance of support systems, the impact of early diagnosis, and the ways they’ve learned to advocate for themselves and others.

Discover the Baldwin siblings' journey from their early diagnosis to their roles as advocates and educators. The Baldwins provide insights on coping mechanisms, the significance of accommodations in school, self-acceptance, and advice for young people and families navigating life with TS. This conversation offers a candid look at the realities and resilience of living with TS.

 

Episode Highlights:

[02:15] The dynamics of growing up with siblings who also have TS.

[06:31] Early diagnosis and family support.

[10:22] Coping with tics at home and school.

[13:27] The role of advocacy and community involvement.

[19:38] Changes in awareness and understanding of TS over the years.

[21:29] Navigating college life with Tourette Syndrome.

[29:11] Importance of accommodations and early interventions.

[36:16] Leveraging ADHD strengths in teaching.

[37:03] Final advice for individuals and families affected by TS.

  

Remember, each story shared on this podcast brings light and understanding to the diverse experiences within the Tourette's community. Your journey is your own, and it's filled with potential and promise. If this episode resonated with you, I encourage you to like, share, and leave a review to help us connect with more listeners.

 

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Anna Baldwin:

I really liked knowing that they understood what I was going through. You know, it's not easy going to school every day and being different. So I liked having that support. I mean, don't get me wrong, we absolutely tormented each other. But it's nice to have the support.

Michael Leopold:

Welcome to the apptech, brought to you by The New Jersey Center for Tourette syndrome and associated disorders, empowering children and adults through education, advocacy and research by sharing the stories and experiences relevant to the TS community. Hello, and welcome to this episode of the apptech I am chatting with Anna and Eric Baldwin. Anna Baldwin is a middle school math teacher based in New Jersey. And Eric is about to go into his senior year in college at Franklin and Marshall College in Lancaster, Pennsylvania. It's great to have you both on the podcast.

Anna Baldwin:

Thank you.

Eric Baldwin:

Thanks for having us.

Michael Leopold:

Yeah, absolutely. You both have Tourette and CO occurring conditions. You also grew up in a family where Tourette was was talked about you had but there's another sibling that wasn't able to make it on the podcast Sarah, the middle sibling in your family who also has TLS. And I imagine that there's there's pros and cons to that definitely like having the support and understanding of siblings, but also the challenges and stress of being around other people ticking and how that can trigger your own tics and things like that. So this episode is devoted to discussing Tourette in the family. You've really grown up with the New Jersey Center for Tourette Syndrome. You've been involved in that as youth advocates and volunteers since you were kids. It makes sense to have you guys on the podcast as this is an NJ CTS produced series. Can you talk each each share a little bit about what it's like being in a family where your siblings also have Tourette.

Eric Baldwin:

Oh, I'm so pretty loud.

Anna Baldwin:

He was very loud. I would say when I was a freshman in high school was when my tics were the most severe. And the three of us would just feed off of each other all day long. As difficult as it was we tried to make the most of it. Sometimes I would trigger Eric's tics and we trigger each other's tics and try to have fun with it make the most of the situation.

Michael Leopold:

So I understand Eric, you were diagnosed first you're five years old. And then Anna and Sarah got diagnosed when they're around like sixth grade. Talk to me about that moment when Eric I don't know how many memories you have of being five. But so maybe this is a question for Anna. But like when Eric was diagnosed, and uh, do you have any idea that like, oh, maybe I have some of this too? Or like, how did that come about? How did your diagnosis come about?

Anna Baldwin:

Or I don't know how much you remember, you remember any?

Michael Leopold:

I'd be impressed if you did. So

Anna Baldwin:

I remember from that time period, Eric got the diagnosis. And for so long, we had known something was going on. We just couldn't figure out what it was. Because this was probably what, like 2007. So there wasn't a whole lot of information. My mom was so relieved when she got the diagnosis. But at the same time, what the doctor had said to her really terrified her. She told him to take them home and love them. And she really didn't give any hope or anything like that. So my mom, she was devastated. She thought that he was never going to be independent. And she thought it was just going to be this lifelong, horrible struggle. She was trying to come to terms with it, find out more about it. Luckily, one of our cousins had already been diagnosed with it. We've a very twitchy family. So she ended up calling her sister my aunt Regina to just kind of talk to her and see what it was like get some insight. And we kind of just took it one day at a time for a while. But at that point, we had no idea that myself or Sarah had Tourette's, I was actually brought into the allergist as like a two or three year old because I kept blinking I kept sniffling which typically are the initial signs of Tourette and they wrote it off as allergies saying we had dust mites. Oh,

Eric Baldwin:

you're remember that? I was gonna say our neighbor was a nurse. Do you remember what kind of nurse Mrs. Variables? She worked in the ER I think I remember our mom was telling you story of she was just with me one day around her. And our neighbor looked at me and said I think he's having a seizure. Because my eyes kept like rapidly closing and that was like looking back into my head. And I was maybe two at the time. They say it starts but the head moves down your tip come on started and that's funny. Yeah. You always hear that like I blinking is the first one. Like I had Bob

Michael Leopold:

or Yeah, no, it just triggered this story about them thinking it was a seizure. I had a similar experience where this was an elementary school I hadn't been diagnosed yet. Actually, no I had but but pretty recently, and there was a teacher who I'm not sure if they knew I had Tourette's or not, but they got a thought it was a seizure and actually sent me down to the nurse on my own, which is a little odd. Like why would you send a student kid down the hallway to the nurse, if you think they're, they're seizuring. But anyway, so maybe they need a lesson on on Tourette and also epilepsy at the school but very supportive teacher otherwise, but that was one one story I remember. Yeah. So Eric was diagnosed first and then Anna, how did yours eventually come about? I'm sure eventually they realized it wasn't just dust mites, there had to be something more to it. My Tech's

Anna Baldwin:

were always super super minor. I would blink my eyes, I would sniffle and I would. I used to just kind of switch my arms. So it wasn't anything noticeable until I hit fifth grade is really when it started. Because we already knew Eric had it. We knew the likelihood was I also had it. So we ended up scheduling an appointment with the pediatrician who then recommended us to a neurologist. So it took about a year to actually get the diagnosis just because it was it took forever to get the appointment. But we had suspected that's what it was because of Eric, and

Michael Leopold:

then Sarah's case was she diagnosed around that same time.

Anna Baldwin:

She was diagnosed a year or two after me. Okay, I

Eric Baldwin:

remember at that point, it was just kind of like well, I might as well be off course.

Anna Baldwin:

And then our diagnosis,

Michael Leopold:

and you'd already had the cousin with it. And yeah, this was another a second cousin. That's what that that happened in my family to similar things where yeah, as you go through, you're developing your childhood you'll notice like, like cousins and stuff start showing signs of ticks and like, as the family grows and evolves, so does the Turandot seems like, or at least ticks the family? What is it like growing up with with other siblings that have that I

Anna Baldwin:

really liked knowing that they understood what I was going through, you know, it's not easy, go into school every day and being different. So I liked having that support. I mean, don't get me wrong, we absolutely tormented each other. But it's nice to have the support. You think every

Unknown:

day? Yeah, I guess I can't really speak to I don't know what it's like to grow without siblings with Tourette. I just always had that kind of reassurance that I'm not the only one. Going through this. Everyone else has the same exact thing that I do. No matter how weird you feel in school, going down the hallways, people looking at you. You go home and you're Eric.

Anna Baldwin:

And then the weird is amplified by the siblings. Yeah.

Michael Leopold:

Did any of you ever have

Anna Baldwin:

the same tics? Just the common ones? I think it was funny because they say you know, everyone with Tourette's is totally different. And that was 100% true for us, my sister. Now this is back when we were in high school. She mostly dealt with the comorbidities that came with the Tourette. So the anxiety, the OCD that seemed to affect her more. My vocal tics seem to be the biggest problem for me. And then it was Eric's motor tics. That seems to be the biggest problem for him. So all of us while we all had the same thing, the struggles were very different. vocal tics ever. Yeah. And i your i had a screaming tic, and coprolalia. That was bad.

Michael Leopold:

I can only imagine. Yeah, I was always more of the motor tic type. I got some mild vocal tics, throat clearing noises, squeaking, humming, tongue tapping, like that minor stuff. But my complex tics were my motor tics. It's funny too. I also come from a family where my siblings also have diagnoses of Tourette. I have three siblings, two of them are diagnosed. But their tics are even more mild than mine. And they're a lot more than CO occurring conditions. I think they have like barely enough tics to get a diagnosis of Tourette and then probably the one vocal tic and then like two motor tics or something, I'm exaggerating a little bit, but really, it's that perfect Punnett Square where like I was always the one with more the tics and then OCD, anxiety, depression, the other kind of CO occurring conditions, we saw more with my siblings, when your tics were flaring the end of the day. So you're both home from school and you're exhausted, tired from the end of the school day. You're also in a safe place being at home. So the tics are coming out more. How did you guys cope with that with let's say, Eric's motor tics are going and you got your vocal tics? Would you guys just kind of isolate or over time did you get to the point where you could just kind of coexist in the same room and it just didn't really affect each other?

Unknown:

I don't think we're ever at a point where we would isolate ourselves, except for like very extreme circumstances. Like if we had a tick that was like actually hurting us. looking along those lines was

Anna Baldwin:

when I shoulder punching tick, and that one, you know that one I would kind of leave because I know that was it's upsetting to watch this.

Michael Leopold:

Just the worst those are those are awful.

Anna Baldwin:

Yeah. So go for runs and but most of the time we just let it be between

Unknown:

the three of us. We never, I guess Sara more than us, but we're not super like, we don't pick up on ticks super easily. I think this is true for you. Sarah would go to the Leadership Academy and come back with like, 20 new texts, and she traded them all out. We never really picked up on each other's like ever,

Anna Baldwin:

I think pick up other people's texts. But if I saw someone else taking mine would increase.

Michael Leopold:

That's how mine was I was never that prone to to contagion. It was just I think a couple of my very first time I went to a conference people with with Tourette and I picked up a ticker, like one or two ticks. After that, for the most part. No, I wouldn't. But it definitely would exacerbate my own tics just being around that I think we're all different with that regard. What do you guys attribute some of your success to in terms of just I mean, you're both you've gone through life, both have gone through college. Eric, you got one more year, but we'll we'll count it, we'll round up. And I remember you telling me you are looking at grad school options. And both of you have jobs and work and things that are keeping you busy. I'm asking this question from a place of kind of what advice would you give to a young person maybe someone recently diagnosed or someone in those teenage years who has Tourette's or and these co occurring conditions? What do you attribute your your successes to when it comes to Tourette and how you manage it.

Eric Baldwin:

I didn't say that don't even consider it. And things like school work, like what you want to do what fields you want to go into. I've always had like an idea of what I wanted to do. And I always knew that it was going to be hard and it's gonna suck is always that's what I want to do. This is my things is my calling. I'm just gonna go for it. Because there are a million reasons that I could fail. And Tourette is probably not the highest on the list. You just gotta go for it. Kind

Michael Leopold:

of like what choice do we have, like, Tourette's is all that I know, like, I've had it my whole life. I wouldn't want someone to pity me for it. It's just kind of, we find ways to live our life and pursue goals given the cards were dealt.

Eric Baldwin:

Exactly. And what are your thoughts on that?

Anna Baldwin:

Mine's kind of a little bit different. So I would say, get involved, meet other people who have Tourette's. Yeah, it was nice having siblings with it, who could relate to me. But when I first met somebody outside of my immediate family, who also had Tourette's and could share in those experiences, that was a life changing moment. For me, it was some convention that I went to. But just meeting those people really opened my eyes to all the different possibilities that were out there. And from that point forward, I got involved with NJ CTS, I learned how to advocate for myself, I learned more about Tourette's and coping mechanisms. And that really, is what led me to succeed. Did

Michael Leopold:

either or both of you speak about it to your class ever when you were in grade school? Actually,

Anna Baldwin:

the day that I was diagnosed, I spoke to my sixth grade class about it. We're ready to

Michael Leopold:

go by that point like you. Yeah, at that point, you

Unknown:

don't have it yet. And

Anna Baldwin:

we knew that I had it. We just needed to get that official diagnosis from the neurologist. But we knew because Eric had already been diagnosed, we knew what it was. And at that point, I was pretty severe. So everyone in my class, they just kind of looked at me like, What are you doing? Because I was making noises. I was punching my shoulders. It was it was severe. And I couldn't suppress it at all. So my mindset was, if they don't know what's going on, they're going to make comments. They're going to say things. But that's just ignorance. So I wrote a little speech, it was a one page thing, I typed it up. And then I went into school that day. And I read through the speech thinking once they know what it is and they have that information. If they then come back and make fun of me, that says more about their character than it does mine did the presentation and then I went and got the diagnosis. And then from that point on, I found the youth advocate program with NJ CTS. And so then I was actually trained on how to do it. And I did the presentation in Eric's classes. I did it for sourdoughs classes and and it kind of spiraled I ended up I've probably spoken to, I don't even want to guess how many people, but I would go into different schools and now I do it for my own students every year.

Michael Leopold:

Wow. Do you do that like the beginning of the school year to let them know or how does how do you organize that? At some point

Anna Baldwin:

in the beginning of the year, I just give them a heads up. Hey, you know, I have to read this kind of what it is. But then when Tourette Syndrome Awareness Day in New Jersey, that's when I tried to do the presentation for the class in June. Yeah, do it. And I mean, they already know what it is not like because they all have the internet. They see it on Tik Tok. It's not like our generation growing up where it was, you know, you only heard about it from TV, and it was just cursing. Kids have a little bit more of an understanding than we did. But this is

Michael Leopold:

an interesting point. I'm curious to hear how you explain Tourette to your students because like you said, they they're growing up in a different generation. They do have tic tac, they see the examples of it, they probably still see a lot of the extreme, like the sensationalized stuff. But there's a chance they may also see other characterizations on it when you're disclosing Tourette and or doing kind of the Tourette Schpeel to your your students. Now, how is it different from a presentation you may have given when you were youth advocate.

Anna Baldwin:

I mean, at the end of the year, I still don't actually use the NJ CTS presentation. And I just kind of go through that with them. But at the beginning of the year, I usually wait till I'm having like a big tick day or something because I want the kids to get to know who I am as a teacher first. And then once they get to know me, it's usually about a month or so into school. If I'm having a bit of text, I'll let them know just as they're coming in. They all sit down. I'll tell them Hey guys, I'm having a bad tick day. And then I explain I have Tourette syndrome. And I tell them sometimes you're gonna see me blinking. You're gonna see my muscles moving. You might hear me sniffling those are just my tics. I can't help it. It's just something you might notice. And then it's cute the rest of the year. Every time they see me taking pointed out like a miss Bowman, is that Tourette's?

Unknown:

Is that like it's a big secret? Yeah.

Michael Leopold:

Do they like try to show you the videos they see a like tick talkers with it and stuff like, oh, this person has it. Have you? Are you familiar? Like they assume I find when I disclosed mine to young people and actually do adults too. Or people my age at least they're like, Oh, do you know someone's I don't know who the latest talker is with it. But like, with this assumption that we all know each other. We're even daring because like we sort of do or at least we have some like knowledge of it. A lot of us, but it's just I don't know, it just makes me smile when I when I hear that. Yeah,

Anna Baldwin:

that's always their follow up question. So like, Oh, do you know this tick tock or this? Yeah, I of course, tell him that is my best friend. You're

Michael Leopold:

actually getting coffee tonight after tonight and get dinner plans? Yeah, I

Eric Baldwin:

do think that is a big part of the reason why it is more well known. Now. People like Billy Eilish. He's really famous musicians who are coming out saying, oh, yeah, I have Tourette kids are seeing it. They're seeing that it's not just cursing, it's blinking and these movements. And that's not like the focal point of this person. That's true. It's led

Michael Leopold:

to a lot of awareness, not just around tics, but just like the CO occurring conditions as well. I mean, mental health awareness has so much more. I mean, the younger generations now so much more accepting of an understanding of therapy, talk therapy, saying your, your psychologists, all of that, like getting using the resources, we have to treat what's going on or to manage what's going on. You know, I hear so much more about like OCD, anxiety, depression, everything else, too, is as well, I think there's just a lot more awareness in general than when I was really young and first diagnosed, it

Anna Baldwin:

is interesting to say, because I've now been doing some variation of the presentation for 13 years. And the reactions that I got 13 years ago, versus the reactions I get now are totally different. And the questions that I get are totally different. You know, when I first started, they all had kind of heard of it. And the questions were way out of left field. But they truly just didn't know. And it's so interesting now, where i i think I'm telling them a really cool fact about it. And they're like, We know,

Michael Leopold:

like rolling their eyes like this is boring. Yeah, they're like, come on,

Anna Baldwin:

like that's obvious. But it just, it blows my mind how much these kids are actually aware of now. And the questions that they come up with are really thoughtful, much different than what I was used to at first.

Michael Leopold:

It's a testament to the advocacy work we've done over the years and others are doing that now we're at that point where we're discussion can can get advanced to the next place. Eric, you're in a little bit different of an environment being on a college campus to talk to me a little bit about how that experience is like with with roommates, classmates, professors, all of that and having Tourette All

Eric Baldwin:

throughout grade school in high school like I would do these presentations, my class, I would make sure everyone knew this is the thing I have, this is why I'm doing this. When I got to college, I just kind of didn't want

Anna Baldwin:

to do that. And

Michael Leopold:

it's so much harder to disclose as you I found to Yeah, I can, I can second that. Also,

Eric Baldwin:

just think it's kind of funny. People being your skirt, I don't care anymore. But it's also gotten to the point where most people see me ticking and they know what it is. And even if they don't know, oh, that's Tourette Syndrome, they know, oh, this dude has something. Right? He's not just choosing to do. Yeah,

Michael Leopold:

you get into those self selecting circles. Also, I think as people get older, hopefully they get less judgmental. Not always, but like, I know you're doing a lot of research and undergrad, Eric, do you have you disclosed your the faculty members working with you on it or to other your colleagues in that the research,

Eric Baldwin:

I definitely rely heavily on, like my accommodations for school. So all of my professors know exactly what so they're the ones that I'm doing research with over the summer. One of the nice things about a small school, my largest class has had maybe like 17 kids in it, I have a very personal relationship with all of your professors, they are going to be understanding,

Michael Leopold:

it's different at every university. But at mine, they give you the resource office accessibility office gives you that letter, and you can take it to your teachers, your professors, and it basically says like, this person is on file with us, they get these accommodations, and every university does it a little differently. That's how my school did it. And you would take it to your teachers on the first week or so. And just like handed out, I'd stay after class. And I actually liked that because it kind of took some of the pressure off me from having to disclose myself and like go into my talk about because like, Yeah, I'm in college, it's a new class, and I'm got anxiety, I got all that just whenever I don't always want to disclose. You give them that letter, and then they hopefully take it home and read it. Often those letters. I mean, sometimes they'll have the diagnosis name, and it's sometimes they don't, but at least then if I do go to office hours or something, and I want to talk to that professor, I already kind of broke the ice a little bit. So I always loved working with the the accessibility office because I don't know, I feel like they just they just kind of know how to make this stuff a little easier in college. Absolutely.

Anna Baldwin:

That's I made the mistake. So I had a 504. I got it in sixth grade, and followed me all through high school, I was doing really well. So I was like, Alright, I don't need it. I'm not going to get it transferred over. And my first semester of college, I did great. And then everything caught up to me. And then I was a hot mess. Then I had to backtrack and get all the paperwork and documentation and go to the Office of Disabilities. And I wish I would have just done that from the start. Because I may have not needed it that first semester of college. But

Eric Baldwin:

I definitely did the second semester. Yeah, I would have made it through even my first year of college without accommodations. And especially as I've gotten further into college, it's gotten more stressful, and that exacerbates things. My tics very often get to the point where I can't do the work in time. Like even just physically, if I were like lightning fast mentally, I physically just couldn't type or like write things because my hands are going and my heads shaking around and I can't read the paper accommodations

Michael Leopold:

are super important. And I think also for me, some of it was kind of learning how college was different than high school, I definitely went into my first semester of college, thinking, Oh, this is just going to be kind of like high school, maybe a little harder, whatever. And I did not do well on my first slate of exams at the end of the first semester. And I was like, Alright, I guess I can't just like study the night before and kind of roll in like I wouldn't in some of my high school classes and was fine with that. Definitely, you have to think a little more deeply like understand the material a little more. It's less about please with my major. It was less about rote memorization and more about like, do you actually understand the concepts? Overall, I think I felt that I preferred the way that academics worked in college. I liked that I could choose more of my classes. I could find classes where I was writing more rather than test taking or classes that were in topics I was really excited about. I also liked that there's not usually it's not as much busy work in college. You're not doing like little homework assignments every day. It might be like bigger projects or exams or papers or things like that. Once I adapted to college, I think I prefer the workload out of college or high school, I just thought it kind of catered to my neurotypical brain a little better than high school did. Everyone's different on that. But for me, it was not just about getting accommodations. It's also just adapting to the difference that is college. Oh, I

Anna Baldwin:

absolutely agree. That college I had to actually learn how to study. class every day you absorb it. And I never studied until I got to college. And then that was tough. Trying to learn how to study for the first time in college. So definitely,

Unknown:

to try now again.

Anna Baldwin:

It was an adjustment, but I ended up actually really enjoying College because it did challenge me. Yeah,

Michael Leopold:

definitely. I felt like at the end of the semester that I earned the grade I got and like if I worked hard on something, and I felt like I really understood the material more, rather than just kind of memorizing it or getting it done. Like you really felt like you engaged with it more, which was good. Eric, what's your research on you want to tell our listeners a little bit about what you're you're working on. Right

Eric Baldwin:

now I am going through and processing datasets from the Arecibo radio telescope rest in peace. I'm still very sad about it.

Michael Leopold:

I cry every

Eric Baldwin:

night, Eric, when I think about it, me too, is here to my what a bummer just thinking about it. But I am going through radio telescope data processing it and essentially searching for highly accelerated binary pulsar systems. A pulsar is just a kind of star corpse that spins really fast and shoots lasers, essentially, with stars can shoot lasers, stars can shoot away or trying spinning space lasers. Wow. Is the

Michael Leopold:

plan to become a some kind of astronomer or like theoretical physicist or like, what's the what's the dream for you?

Eric Baldwin:

My main true right now is astrophysics. I would like to continue with that. I really love the kind of research I've been doing, which has been almost exclusively this. But if I could just continue processing the sorts of data and this kind of research, this is what I want to be. Yeah, so you're very passionate. And

Michael Leopold:

as a as a math teacher now what led you down that path? And how did you know you wanted to be a teacher or work with students from a young age, I'm curious to hear how to kind of how that unfolded.

Anna Baldwin:

It's funny, I was diagnosed in sixth grade. And now I'm a sixth grade teacher. But the main reason was my sixth grade teacher, actually. So she was incredible. She fought with us to try to get accommodations for me, she made sure that I knew that. She saw me she knew I was capable. She knew I could do the work. And she really just made such a profound impact on my life, that I wanted to go and do the same for my students. Because I've also had teachers that were the complete opposite. I know what it's like to be in a classroom and think the teacher doesn't like you or think the teacher doesn't see my potential. And I never want a kid in my classroom to feel that way. I want to make sure that if they have Tourette's or whatever it is, they have they feel supported, and they know that they are capable. And so I'm actually working on my master's, so I can go into special education.

Michael Leopold:

Wow. Have you had a student with tics? Or Tourette? Yes. Wow, I bet they were thrilled to have someone like you who gets it as their teacher and mentor. That's gotta just Yeah, they were very excited.

Anna Baldwin:

And it's funny. Every year when I do the presentation, I'll have kids raise their hand and tell me all the different things they have. They're like I have autism, or I have whatever. And I'm like, welcome to The Club. Yeah, yeah.

Michael Leopold:

I hope they keep feeling free to speak about it and engage with it and keep keep the conversation going for sure. And I know you've done a lot of thinking around the importance of accommodations, 504 plans and like those early interventions for students, do you want to share a little bit more about your thoughts on that topic?

Anna Baldwin:

I think that it is crucial. And for me, I went back and forth on this for a while because there were some days where I really did not need my accommodations. It was an easy day for me my tics weren't bad, I was able to focus. And I would have stretches like that. And I would kind of second guess, like, oh, I don't really need these accommodations. I almost felt like I was faking. I struggled with that for a while, which is why I didn't immediately bring the accommodations over when I went to college. But all it takes is one big tick day where you realize oh, I actually do need this. And it was it was a struggle, getting the accommodations, but it was something that I really did need especially I would say my freshman In your high school was the worst year for me tech wise. And there were points in time where I just physically could not sit in a chair. And I needed those accommodations to be able to keep up with my classmates. So I had a couple of different things. And I know different people have different accommodations, but I had extended time on assignments, I was able to, if I needed to stand up and go take a walk around the building, I was able to go do that I had access to the nurse. And then it was time and a half on assessments. But that was really what led me to be able to be successful in school.

Michael Leopold:

No, it's true. Definitely not a crutch like you, we should we should all use the resources that we have at our disposal. That's why they're there at best, though level the playing field. But realistically, it's still accommodation isn't perfect, and it can help you a little bit. And so use it. It's also embarrassing as a kid I think that was always my biggest fear as a kid with accommodations was I also had extra time. And I don't know, there's got to be a better way that maybe maybe teachers in schools do it differently now, but it was embarrassing to be like the last kid taking his exam. And then I like go up to the front. And I'm like asking my teacher Hey, can I come in during recess or something or after school and finish it? And like, especially when everyone else in the class wants to like go and leave? They want to go to lunch or recess or whatever is next? I don't know are they're all looking at you. And you're the only one that isn't? That's like still working. There's definitely a social pressure on me to not use accommodations, especially like extra time one. I think that was my biggest barrier like growing up with Tourette and like, reasons why sometimes I wouldn't use it was just because like, it was kind of embarrassing. I think what we did, I would turn in my exam or whatever early and just put like a T at the top and circle it. And then she stood for time, I always thought it stood for Tourette's. And then I learned like years later that like no on my IEP, it was actually like super time. And then the teacher would connect with me after class and like discreetly, we would arrange a time for me to finish it. And I like that I think my advice to people listening to this, they are embarrassed about using their accommodations is express that to your teachers express that to your title for worker who your teachers sponsor, whoever you've got that that's working with you on this, because you can troubleshoot with them and kind of figure out what makes the most sense. Like, being a kid is tough, especially in like middle school and stuff when you just want to fit in and, and not be bullied and just kind of want to not draw attention to yourself. So accommodations can easily draw attention to you. So if it takes some back and forth and figuring out how do we make this work, like, please, please have that conversation with your teachers, I'd rather see you have that and troubleshoot it and get the accommodation rather than the not using it at all. Because it's embarrassing. Often there is some kind of solution there that we can do.

Anna Baldwin:

Honestly, speaking as a teacher, the teachers get it. We know everyone who has accommodations, and we want to make sure that the kids who have accommodations, a they're obviously getting them but be they don't feel isolated, they don't feel any different. So we come up with different systems. I had 18 different hand signals this year for different kids to design for different things. And we had posted notes systems and I had, I had kids all over the classroom every day, just doing different things. So nobody knew that this person was still working on a test or that person is getting extra help. You know, just everyone is all over the classroom. And from day one, I say everybody gets what they need.

Michael Leopold:

Well, these are the things that when people think of teachers, they don't realize all that goes into being a teacher, like you have to be aware to learn these 15 different hand signs that various students are using every student has their the support that they need. And it's invisible to the rest of us. We don't we don't notice that this is actually like going on under the scenes in

Anna Baldwin:

one of my class periods. I had eight kids, that all had a different hand signal for something different one kid was if he had to go to the bathroom, somebody was they needed extra time somebody else was just checking in to make sure they're okay. And it was it was not fun at the end of the year. All these different signals I had going on. And the rest of the kids just had no clue. Yeah,

Michael Leopold:

if we can seamlessly do that where like they just don't notice because I think that that's always my goal is like yeah, I'm happy talking about my Tourette's and owning it and all that but there are times when I just want to not draw attention to myself and if we can build a world where we're that's it where you just other people just don't even notice it just kind of things just happen and seamlessly and no one's drawing attention. Anybody like lovely sign me up like that's the world I want to live in. are

Anna Baldwin:

definitely moving in that direction. We're definitely getting closer to that. I remember being in school and everyone was at the desk. Everyone was doing the same thing at the same time and nobody was doing anything different. And now in education, there's a big push against that we're not supposed to be doing that, which is great, especially for neurodivergent kids. There's all these different tasks that we do we do a lot of station work in my classroom. So that way, if somebody is taking extra time, no one else notices because they're busy moving to different stations around the classroom, everyone's getting what they need.

Michael Leopold:

Eric, any thoughts on the topic here?

Unknown:

I guess I'll just say I have immense respect for teachers who can actually be there for their students in that way. Because I have had many teachers who have not lived up to that standard. I can tell it's not easy to be there for everyone and be on top of that, but you're

Michael Leopold:

one teacher if there are no aides or anyone else in the classroom. It's one teacher responsible for however many students they've got 1520 Whatever the number and that's a lot knowing what each student needs and then making sure that they all get that in in the right way. That's tough.

Anna Baldwin:

It is but my ADHD actually makes it easier.

Michael Leopold:

How so? Because you can like put a compartmentalize your mind and a bunch of ways at once. And yes,

Anna Baldwin:

while I'm so used to having 18 different things on my mind that 18 different hand signals don't even faze me.

Michael Leopold:

Oh, there you go. Find a job that uses your your diagnosis as strengths. And always be thinking creatively about how you can use what you've got as a strength. I love it. That leads us to kind of where I like to end these episodes. I always like to ask people what advice you have for people with Tourette and I know that that is the world's biggest, broadest question. And you can answer it in so many ways. It's broad by design so that you can speak to adults, you could speak to a kid that was just diagnosed heck, you could speak to the parent of a recently diagnosed kid with Tourette. But what comes to mind is the pivotal important point you would say, when it comes to tips or advice or mantras, anything like that. There

Anna Baldwin:

is no one size fits all. Every day, it's going to be something different, it's going to be something new, new challenges are going to come up constantly. You just have to learn to roll with the punches and try to make the most of it. Laugh at yourself when you can try to own it. I know that's easier said than done. And there are days where there's a lot to take in. But lean on your people. Find your people and own it. I

Eric Baldwin:

think kind of on a similar note, like Tourette will be a roadblock. Only if you let it. It's fully how will you think about these things? Like what that doctor has said to her mom? About me? Like, yeah, just take him home and love them. He's not going to go through school or like get a desk job or

Anna Baldwin:

be an astrophysicist.

Eric Baldwin:

I haven't even gotten my back shoulders. Yeah. All right. If you are thinking to yourself, yeah, I'm not going to be able to do this, then you're not?

Michael Leopold:

Yeah, our self limiting beliefs are self limiting. They hold us back. Use the resources that you have at your disposal, whether that's through therapy, whether that's medicine, whether that's coping mechanisms you develop on your own whether that's whatever your your quote unquote cure is. We have these resources out there so that we can live in a neurotypical world a little bit more easily. Great points from both of you been awesome having you on the podcast here. To all of our listeners. I hope you found this to be an enlightening conversation. Join us in two Tuesdays from now with our next guest. Thank you all so much. Thank you. Thank you. Thank you for listening to the uptick, brought to you by The New Jersey Center for Tourette syndrome and Associated Disorders empowering you to stretch the boundaries to live your best life. The NJ center for Tourette syndrome and Associated Disorders NJ CTS, its directors and employees assume no responsibility for the accuracy, completeness, objectivity, or usefulness of the information presented on this podcast. We do not endorse any recommendation or opinion made by any guest nor do we advocate any treatment

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