Expanded Reality

Today I met with an amazing professor. She has not only made me feel incredibly welcome in the class, but our interaction is helping me to feel more confident about Tourette's and my tics going into my senior year. I expected her to be understanding since it's a course about how disability is portrayed in the media and in literature, but I didn't expect the incredibly amazing response I got when I sent out my usual introduction email.

This was her initial response to my email ""Thanks for contacting me. I’d love to meet with you. I have some familiarity with Tourette Syndrome and welcome the opportunity to find out more from you and discuss accommodations. If you choose to disclose in the class, it would be a great learning opportunity for everyone. If you choose to maintain privacy, that is entirely fine too. I’m sure you know what works best and is most comfortable for you." 

As I said before, just reading this email helped me to feel like my tics are not a nuisance or annoying, but instead am adding something valuable to the class just by being there. Additionally she has now asked to include a piece about Tourette's (a video clip or a film, either Front of the Class or I have Tourettes but Tourettes doesn't have me) which i'm excited about! Also, she asked me to speak to another class she teaches about disability. 

This is the email she sent to me about that: "Might you be interested in talking with that class about Tourette’s? That class meets 4 to 5:30,  Monday-Wednesday. I think you’d enrich their learning experience tremendously." 

Just these words: "I think you'd enrich their learning experience tremendously" and to hear this from someone older and wiser than me gives me such a great feeling. A feeling of pure acceptance and kindness. 

Today when I met with her she didn't even blink when I did my louder vocal tics. She wanted to do everything she could to help me  in the classroom. She asked questions such as "What can I do to make you feel more comfortable in the classroom?" and I loved it when she agreed that the students would just become used to my tics and told me that they would accept it as their "expanded reality". I like that phrase. It implies that i'm responsible for expanding their world, their minds, and their concept of how things are/should be in the world. 

I think one of my camp friends put it perfectly: "That is freaking awesome. What an amazing response."

Just two more professors to meet with now. Hoping I get two more amazing responses! Although I don't think their responses can even come close to topping this one.

Talking Tourette's

The summer really is winding down. My moms back at work, my brother leaves for his first year of college in 3 days, I'm taking the GRE (graduate record exam) for the first time in 'll be back in school in 1 week, and i'll be back on campus and starting my senior year of college in a little over a week.

Today as the summer is beginning to come to a close, I spent time with one of my closest friends. She's been my friend since 7th grade.  She's known me and been there to support me when I didn't know I had tics, when I had barely any noticable tics at all, when my OCD got so severe that I couldn't touch other people's hands, doorknobs, and when I washed my hands so much they would bleed, when my tics first started and when I had no explanation to give for why I was making noises and movements, and when I had my diagnosis and my tics got to the point where I was yelling out in class every single day and punching myself and the things around me. She's been there for me when not even my parents were able to support me.

She's stood up for me, and for others with Tourette's. I love that when someone tells a Tourette's joke, she tells them her best friend has Tourette's and it's not something to laugh at. She asked questions when I was first diagnosed and still asks questions today so she can learn more about what Tourette's is and what it's like for me to have it.

Spending the day with her today was bittersweet, because I know I won't see her for a couple of months since we go to college in different states. Regardless of that, I know that whenever we see each other again it's like we've never been apart.

Today, I talked about Tourette's with her quite a bit as i'm going into the school year with the goal of being as open as I can be about my TS. I told her about my new goal and she was surprised to hear that I'm not as open about my tics with everyone as I am with her. I told her sometimes it can be the elephant in the room because people in my sorority know I have Tourette's because they see me post about it on facebook or have heard about it from others, and yet i've never directly told them about my TS or talked with them about it. So when i'm ticcing, they just ignore it and while I do mostly appreciate that, sometimes I just feel like it's the elephant in the room, or I'll feel like if i'm ticcing badly I won't want to be around them because I don't know how they react. She reassured me that my tics don't bother her even when i'm having a lot of tics or when my tics are bad that day and that she of course doesn't judge me at all because of my tics. She told me maybe its because she's used to my tics, but that someone with a cold or stuffy nose bothers her more than my tics do and that I should just try to not worry about my tics and just go hang out with others when my tics are bad instead of letting it hold me back from being with them. Even though I already know this, I really appreciated hearing it from her because I really think I just needed some reassurance at this point. It helped SO much! I always get anxious about tics and what others are going to think before the start of school regardless of the fact that every year I receive so much acceptance and support from my professors and the other students at my university when it comes to Tourette's and educating others about it.

Also the last time I hung out with her, we went to the zoo and it was a pretty bad day for me in terms of my tics. I was having a lot of vocal tics and the tic where I punch myself stomach was acting up a lot. I would stop wherever I was standing, and punch myself in the stomach pretty hard a number of times. When we were at the zoo together and when she saw it she said "That looks like it hurts" and I told her it does. Today she brought up that tic again and asked if it was better. She told me every time she saw me do it at the zoo she would cringe not because she was bothered by it or anything like that but because it looked like it hurt so much. I told her it's been a lot better and that i've actually barely had it in the last week. The fact that she asked me about it and told me this is something I love because it lets me know she cares. She know she can bring it up even though its a tic that's more serious. When I have these kinds of tics in front of others I sometimes worry what they are think. My OCD tells me that when they see these kinds of tics they won't want to be around me any more because it's something that's too much for them to be around or that it will make them too uncomfortable and they will shy away from being my friend. I know for most people this is not true, but OCD worries can be so powerful. So to hear a friend talk so openly and express care for me like this surrounding one of these more significant tics is something that helps me more than I can even say. It gives me hope that if I choose to be around some of my other friends when i'm having a day where my tics are bad or i'm having more of these significant tics that they will express the same care or will just ignore it and won't mind.

Overall it was a great day. We walked to lunch at a coffee and crepe place near my house, we played with my dog and cat, decorated boxes and did a lot of fun crafting with she really enjoyed (she said we should have been doing this all summer and that she really loved it and was having fun!), and just talked and spent time hanging out. I love how we've gotten to the point where we can casually talk about tics. When we were decorating the boxes, I ticced and hit the table a bit and at the same time she accidentally scooted the table back. I then said casually "I was the one who moved the table! It wasn't your tic!" and then she joked with me when I did one of my tics by saying "bless you!" when I ticced because she knows how often others say bless you when I do a tic because they think its a sneeze. This year my goal is to have even more people at school who I can get to this place with, where we can casually talk about tics like it's no big deal. I don't want people to tip toe around me and think they can't bring up my tics because I may get offended. I realize that this will take work on my part because in order for others to be comfortable talking about my tics I have to bring it up first and talk about it causally and like its no big deal to let others know i'm comfortable with talking about it. My friend today suggested that I try telling stories about camp or bringing it up casually on conversation in a natural way but also just to be around them when i'm having a day where my tics are worse. All good ideas :)

Also I just sent out my annual emails to my professors asking them if there's a good time we could meet before classes start so I can tell them a little about Tourette's and how it will effect me in the classroom. When I sent out those emails, I know school is close! Nervous and excited as always :) 

There's puppy on the plane!

I haven't been able to write for the past week or so because things have been pretty crazy since i've been back from camp. My mental obsessions and compulsions have really been acting up and i've had to implement a lot of strategies to help them calm down. I've also been very busy with work, extracurriculars, and studying for the GRE/ preparing to apply to graduate school. This is the first time i've been feeling ready to write and it's 12:40pm. 

I didn't want to write about too much tonight, but since i'm in the mood I wanted to tell a light hearted story. After camp I hung out with my camp family in Atlanta. We all stayed together in a suite and had the absolute best time. Even though my tics were pretty bad (worse than they have been in a while) and even though my anxiety and OCD were pretty bad as well, I felt so supported and loved. I will definitely write more about the weekend later! There are SO many fun stories, but for tonight I wanted to tell the story of the plane ride back home because its cute and quick. 

My vocal tics had been acting up A LOT during the week of camp and even though they had started to calm down near the end of my time in Atlanta, they were still kind of bad. So on the plane I knew I was going to educate the person sitting next to me about Tourette's even though I was going to try to sleep most of the way. The man who sat down next to me on the plane was speaking in spanish on his phone, so I pulled up the spanish version of "What is Tourette Syndrome" from the TSA website on my phone in case he didn't speak english (http://www.tsa-usa.org/imaganw/What_is_TS_English.pdf). They also have this brochure in Chinese, Vietname, Korean, and Japanese in case you need it which i've found comforting, particularly on planes, even though I've never needed to use it. 

When he got off the phone I introduced myself and asked him if he spoke english. He said he did, so I didn't need to use the brochure. I then told him I just wanted to let him know that I have a condition which make me twitch and make noises that I can't control. I had been ticcing while he was on the phone, and his immediate reaction was to smile and told me he understood and that it was no problem. He then, however proceeded to ask me if I had smuggled a puppy on the airplane in my backpack!! Hahahaha. I laughed and told him no, that was was just me, and that that's a noise I make because of my tics. I'm not sure if he understood what I was saying because he kind of still looked confused! I think it was either the language barrier or that he didn't believe me and actually thought I was trying to make up an excuse to hide the fact that I hiding a puppy in my backpack! 

I had a good laugh and texted my camp friends after the flight telling them the story. They said they were proud of me for telling the person on the plane about my TS (although for me that's really no big deal! I do it all the time, even if sometimes I am nervous initially). I also think they got a good kick out of the whole puppy confusion!

The Importance of Support for Individuals with Tourette's: An Incredible Professor

I know I haven't blogged in a while, but there has been a lot happening in my life and things have been pretty great. I want to update you all about something that has given me a lot of inspiration and hope about my future (and write this for myself to chronicle my college journey).

I signed up for a course I was very interested in at the beginning of the semester and was very nervous going into it. I was particularly nervous because the professor of the class is very prominent in the field I want to go into . I was nervous about how she would react to my tics and I was worried that my tics would influence what she thought I was capable of achieving (something my parents told me would happen when I was first diagnosed) . I KNOW that my tics don't effect my ability to be a student, to write, do research, or succeed and move forward with my goal of getting a PhD in a very research oriented area in ANY way. But that thought of "what if she doesn't understand"was in the back of my head. This class and my relationship with this professor has officially proved my parents so WRONG!

Every relationship I have had since my diagnosis, with a professor, a teacher, a mentor, a friend, or a boyfriend has shown me that my tics will not effect what other people think of me or what they think I am capable of achieving. This relationship/ mentorship however, has blown me away.

Putting things in perspective for my readers a little: my  professor (who I will call Dr. Brown) is a is a full professor at a university that is ranked #14 in the country, is the principle investigator of a prominent research lab, has published coutless instrumental papers, and is as I have said a prominent and well known researcher in her field. In other words, she's awesome and anyone who is anyone in this field knows how she is.

In the beginning of the semester I went to meet with her to tell her about my Tourette's/ tics and how it would effect me in the classroom. I do this with all of my professors (especially for smaller classes) in which my tics might be more noticeable to those around me and to the professor. She reacted very well, like all of my other professors have. She was very relaxed about it and didn't seem concerned at all.

Even though I was nervous about her seeing my tics in class, I was able to be relaxed and just be myself. I loved how she taught the class and was so fascinated by the material. Every class period I had with her, I felt more and more confident that this is exactly the field I wanted to go into. Every lecture held my attention for the entire 2 1/2 to 3 hours in a way that sparked my interest beyond that of any other class I have taken. I started speaking up more in class and asking questions about the material. I wanted to know more and loved the discussions her material sparked in class. I also particularly enjoyed the writing assignments! Since this was a writing intensive class we had a paper abstract due almost every week and a midterm and final paper.

I stopped focusing on my tics in class, and more and more they weren't even a thought in my mind during class because I was so interested and focused on what I was learning and how it applied to my independent research I do at the medical school.

When it was time to write my midterm paper, I was excited. I picked one of my favorite topics, a topic related to sensory processing disorder, Proprioception! Although I actually knew very little about Proprioception going into the paper, I did a lot of research and learned so much out of the experience of writing the paper. I turned it in and then went on spring break.

When I came back from spring break, I was excited to get my paper back and to hear what Professor Brown thought of it. I value her option and insight so much and was very curious what she thought of my paper. Sure, enough when I got it back, I got an A! She had written on the paper, "excellent paper! great transitions as well as content!". Then she said to the class "I'm going to ask a few of you to stay after class because I would like to get some of the papers you referenced in your paper to use in some of my other classes". I figured she was not talking about me since my paper topic was very specific and probably would't directly relate to the content she was teaching in any of her other classes. However, at the end of class she asked another student in the class and me to stay after.

She asked the other student first if she could use one of her references, and then when the other student left the room, Professor Brown asked me if I would send her my whole paper. She told me that she would like to use my paper as an example of an excellent paper to show to students when she taught this class in the future. I of course was not expecting his! I saw that my paper got an A and had really enjoyed writing it, but I would have never imagined that it was so excellent that she would want to use it as an example. Of course I said yes, told her I was honored, and sent her the paper.

Later on I had scheduled an appointment to meet with her to get her advice about applying to PhD programs next year. During the meeting, time and time again I was blown away by how much she believed in me. She told me how impressed she was with my writing and that she thought my writing was at an even higher level than some of her graduate students (wow!!) and during the course of the meeting stressed that I should focus on research in graduate school instead of clinical work because she believes I have what it takes to succeed in the highly competitive research field and I have what it takes to publish and teach, allowing me to make a larger scale difference and one day take on a position like hers. This is essentially my dream. This is what I have dreamed of for years. There is nothing that I would want more than to make this kind of difference in the lives of children, to have my own lab, and to do research at that level. Professor Brown, someone who I admire and look up to so much,  was sitting in front of me not only saying that it was possible for me to do this, but that she believed in me and believed I could not only achieve my dream but excel in it.

When I asked her if she would write me a letter of recommendation for graduate school, she said she would be glad to. I think her letter could make a huge difference. She then asked me if I planned to tell the people whose labs I will be applying to/ interviewing with about my TS. I told her I was unsure at this point. She then proceed to tell me that if any of the professors whose lab's I was applying to had questions about my TS, she would be happy to talk with them. I thought this was so incredibly sweet and amazing of her to offer. I felt taken care of, and so supported. I felt like I had someone rooting for me, someone in my court, someone witting to stand up for me if anyone questioned me or wondered how my TS might affect me in a lab / research setting. I told her because of how my tics have been on the more moderate/ mild side lately that this probably would't be necessary, but I can't even put into words how supported it made me feel.

Someone who I was so nervous to tell about my TS is now willing to stand up for me and to help others understand what TS is and how it effects me. For me, I cannot even tell you how much of a huge deal this is. Because of how my parents handled my TS, I have had very few adults in my life who have been able to stand up for me and make me feel so safe and understood. While this has made me my own best advocate, it's an incredible feeling to know I do not have to carry this weight all by myself and to know that if I need help advocating or am in a situation where I need a little extra support, I have someone willing to be there for me :)

Valentines day! :)

Happy Valentines day everyone! What are you doing to celebrate? I'll be spending valentines day with my amazing boy friend who accepts me, tics and all. Although I haven't been ticcing around him a lot (a combination of suppressing and the fact that my tics have decreased a lot because of CBIT), he knows I have tics and it doesn't change his opinion about me.

Yesterday he gave me an amazing compliment! I was telling him about volunteering with the kids at the hospital and how they seem to like me and he said "Of course they like you! You're so laid back and sweet. You're the kind of person who a child would naturally feel comfortable with and open up to". I so appreciated his compliment! It made me feel great and so special smile emoticon

Telling The Guy I'm Dating About My Tics! :)

Well I finally did it! I told the guy i'm dating about my tics. It's a GIANT weight off my shoulders, and it ultimately wasn't that big of a deal at all. I told him last night very casually while talking about camp. We sat down to eat some dinner and when he asked how my day was I told him it was great because I sent in my application for my 3rd year as a counselor at the camp I've been volunteering at in the summer. I had told him a little about the camp before, but this time I went into more detail. I told him that I'm looking forward to seeing all my campers who i've made such close bonds with. I told him that I bond with them and they really look up to me because I had tics when I was younger too, know what it's like, and am able to give them advice and be an older role model who has been though what they've been though.

I also told him that I still have tics, but i'm able to suppress/ hold them back more than I was able to when I was younger. I told him that it's like a cough or a sneeze, you can feel it coming and hold it back. I told him it's kind of like when you're in a movie theater and don't want to make noise so you try not to cough, and then when you get out of the theater, you just cough a lot! He said he didn't know it was like that. I told him that's why he hasn't really seen me do any tics and he agreed that he hadn't noticed anything and said he didn't know I had tics.

He was really great about everything I told him about my tics. He was very understanding, very positive, and even asked me a question ( I love when people have the courage to ask questions, instead of just sit there, smile, and nod). He tried to be compassionate and sympathetic by telling me that sometimes his eye twitches so he knows what it's like to not want other people to see that, but that ultimately you can't control it, so you shouldn't be embarrassed. He also said that he understands that people might judge you when they shouldn't because you're twitching or moving , but they shouldn't judge you because its not something you can control.

When I was telling him I made sure to stress that it wasn't a big deal, that my really good friends who've seen my tics a lot say they don’t even notice it anymore and I also made sure to tell him it's made me into a more compassionate person and understanding others differences.

After I told him, we studied together and when it was time to leave, I walked him out, he kissed me goodbye, and told me he would text me the next day. Sure enough, he texted me today and asked me if I wanted to go out to dinner with him. Dinner tonight went well and I felt much more relaxed around him. I am so glad I told him. I feel like now I can be so much more invested in the relationship and be myself more. I also now know that he is accepting of the fact I have tics and still wants to go out with me. It's still going to take me a while to actually feel comfortable ticcing around him, but i'm getting there! This was a huge step for me, and I'm so glad it turned out so well. Thank you to everyone (shout out to Brandy especially!! You helped me so much in terms of taking this step!) for supporting me through this and helping me to have the courage to tell him. I feel so relieved and happy. Everything in my life is just going right :) I am in such a good place right now, I couldn't ask for anything more. I feel so blessed :)

Telling a Friend Who i'm going to Live with Next Year about Tourette's

Talked to my friend (who is a sister in my sorority) tonight, and it went great! I She asked me to live in an on campus apartment with her for next year so I thought it would be the best thing to tell her about my tics ahead of time. I told her in a casual way and in a way that made it seem like no big deal, while also letting her know what my tics are like and about my vocal tics. She didn't bat an eye. She wasn't phased at all. She treated me just like she always does. I told her people usually get used to it pretty quickly just like you might get used to someone who has allergies and coughs or sniffs a lot. She smiled at me in a very reassuring way and told me that she's sure that's what will happen with us and that she isn't worried about it at all about it when it comes to housing next year. So we will be living together next year as long as everything goes as planned :) 

Can't wait to spend more time with her and get to know her even better! 

A Professor with Tics!

One of my psychology professors has facial tics! So cool! I love seeing people with Tourette's / tics making their way through life, succeeding, doing what they love, and never letting their tics get in their way!

I haven't officially talked with her yet about my Tourette's and she hasn't told me she has tics, but as someone who has TS and researches it, I know tics when I see them.

I'm going to meet with her next week to talk with her about my TS. I originally wasn't going to, because it's a bigger class, but I've been having a tic of raising my arm/ hand and supressing it in that class has been interfering with my concentration, so I decided I'm going to meet with her so I don't have to worry about it.

I will update later about how that goes.

Yesterday I told another professor and a class about my TS, and like usually it went so well. The professor was amazing and I absolutely love her and how she mad me feel so accepted and comfortable about my tics. She told me she had a grad student who hiccuped and that everyone got used to it very quickly. She was very warm and welcoming. Her class is developmental neuropsychology and since that's what I want to focus on in grad school, I couldn't be more excited for her course! She says it's her favorite course to teach, so that's always a great sign :) 

My Professor this Semester is on the TSA Scientific Advisory Board!

Today I was looking around on National TSA's website and since i'm starting to look into PhD programs I was looking at the Medical and Scientific Advisory board. I was scrolling down the list looking at the various universities the board members are affiliated with when I saw the name of my university! 

The woman's picture looked very familiar too! It took me a few seconds to remember where I had seen her before and then it hit me, she's one of my professors this semester! I've never actually met her in person, but I had seen her picture when I looked up her e-mail. I'm taking her Biological Psychology class this semester and I was ecstatic that I had just come across the fact that she's on the TSA's scientific advisory board!

Well I guess this means I won't be needing to explain to her what TS is! Of course I'll still e-mail her and tell her I want to meet with her before classes start to explain my accommodations and let her know about my TS, but it will be so nice to have a professor who really understands TS and did long before she met me! This is going to make my first week of school this semester just a little easier, and anything that makes my first week even a tiny bit easier makes a big difference considering how rough that first week can be with the seemingly constant explaining I end up having to do. By the end of the week i'm usually exhausted, frustrated, and thinking "if I have to explain Tourette's to one more person I think i'm going to explode!!". Lol, I get through it every year though and this year i'll have one less professor i'll have to explain it to 

This is the second thing that's happened that's given me a really good feeling about this year. First my RA e-mails me back telling me she had a friend in high school who had Tourette's and now one of my professors is on the TSA Scientific Advisory Board! I think my first week of school is going to be a lot easier this year with all this and with my amazing friends standing by my side 

Feeling Better Thanks To A Friend

Feeling a little better about my new swearing tic thanks to my amazing friends! I was texting one of my best friends in college who is going to live in my suite this year and I told him about it. He was so amazingly supportive like always. We're going to be in a class this year together and so he texted me back saying "if you do it in class, i'll give a mean glare to whoever looks at you!" he also said "I was going to say that I would swear with you, but then I realized that would cause more problems. haha, if we aren't in class I'll definitely join in  "

I have the best friends in the world! I was feeling so nervous about starting school with this new tic earlier today before I talked to him, but now I'm feeling so much more confident and less nervous about it. Out of all the things I can try to do to make myself feel better when i'm ticcing or nervous about ticcing, nothing helps more than when other people make me feel at ease about my tics by standing up for me when people stare, joining in with me, or joking with me/making light of my tics. Accepting and supportive friends truly make such a huge difference in my life that I can hardly put it into words. Thank you to all those friends out there who are our first line in emotional support. You do more for us than you could ever imagine 

My Annual TS Message to my RA

Sent my annual message to my RA (the student who is technically in charge of our floor in the dorms) letting her know about my TS. I do this every year. My tics have never caused a problem in the dorms, but I still tell my RA each year just to make sure she is aware of it on the front end. 

I have no idea if there would have been problems or not if I had not told my RA each year about my TS, but I really prefer to be safe about it rather than putting myself in a difficult or uncomfortable situation (which has happened a few times when a professor/teacher/or other person i'm around hasn't been told about my TS). Anyway, my RA responded to my e-mail, and like all of my RA's in the past, she sounds amazing and accepting.

Here was her response " Thank you so much for getting back to me! I had a friend in high school who also had Tourette's so I am familiar with it, but there are definitely more things I can learn from you! Looking forward to meeting you soon!"

It always makes me so happy when someone i'm trying to educate ends up already having known someone with TS

"Stand Up for What You Believe in, Even if it Means Standing Alone"

This is a post that I originally wrote in 2011. I decided to re-post it today because of a conversation I had with my mom about the night that I wrote about. I also wanted to re-post it for many of my campers from camp twitch and shout. This is something I wrote when I was only a year older than most of them! I can't even believe that! I might end up re-posting some of the other things that I wrote when I was around their age too. I think that might be interesting :) 

November 1st, 2011- 

"Today I wanted to write a post about an encounter I had with my grandpa over the summer. This summer, my grandpa took my family (my mom, my dad, brother, and me) along with my step aunt, step uncle, and two younger cousins to France. In France, we didn't eat as a large group that often, but on the last day we all ate together at the hotel's restaurant and I sat next to my grandpa, per his request. My tics had been bad that day and near the end of the meal I started shaking my legs and knocking my knees together. Everyone at the table knew I have Tourette's including my grandpa, but I was still very self-conscious about it and at the moment I really would have loved nothing more than to be able to sit still. I tried as much as I could to stop my legs, but they just weren't going to listen. I figured that this was my family, and that they understand and know it's not my fault. I tried as much as I could to reassure myself that things were alright. A few minutes later though my grandpa did something that really surprised me, especially because he's a radiologist  and went to medical school. He put his hand on my legs and said "stop that!" He even tried to hold my legs down. I said I was sorry and tried my best to keep my legs still, but after another few seconds, my tics started up again. My grandpa looked over at me again and said "Stop twitching. Your making me dizzy!" I didn't have anything to say back to him really. I just couldn't make myself stop no matter how hard I tried. After another minute, my grandpa said something that I will never forgot. He told me that I really needed to try harder and that if I really told myself to hold still, I could. He told me that if I tried, I could stop. How could my grandfather, a doctor, actually be saying this to me? At that moment, I wanted nothing more than to be able to stop.

As much as I felt surprised at his reaction, I really shouldn't have been too shocked. This was not the first time this had happened. A similar thing happened in 3rd grade when I was riding with my grandpa in his car and doing one of my first tics, sniffing. I had no idea what a tic even was, but I remember how he pulled over on the side of the road and stopped the car. I remember how he told me that we would sit there until I stopped sniffing and that until then, he wouldn't start the car back up again. I'm not quite sure how long we sat there before he realized that no matter how many times he told me to stop I wasn't going to. 

I was reminded of that moment as I sat at the dinner table thinking that I had had enough, that I couldn't stop. Remembering that moment, I decided to stand up for myself and for that child, that past version of myself, who didn't know what she had done to make her grandpa stop the car and start yelling. So, I got up from my chair and told everyone I was going back to the room and that someone else could eat my dessert. I walked back to my room and when I got back I started to cry and tic all over. After 10 minutes of ticcing and crying, my mom came to the hotel room with my dessert and tried to comfort me. She ran her fingers through my hair and told me that my grandpa had left and that everyone else wanted me to come back up. At this point I was crying and ticcing too hard to come back up though, so I stayed down in the room until I had calmed down enough to fall asleep.  

The next day my aunt stopped in my room early in the morning to say goodbye before she left for her home New York. What she said showed me that my grandpa even though my grandpa had said those things, the rest of my family accepted me and thought I had done the right thing. She told me, "I wanted to come see you before I left. Your Grandpa being a jerk last night and you really handled yourself well" and then she hugged me. I later learned that she had really defended me after my grandpa left. That night, she told everyone that I had done the right thing by leaving the table. My aunt made something that really hurt me into something that showed me that she and the other members of my family accept me for who I am even if my grandpa doesn't understand and just wants me to be normal. News for you grandpa: I'm not normal. I'm unique, creative, compulsive, and twitchy. I'm me." 

July 29th, 2014- 

Today my mom and I were walking the dog and talking. In conversation, I told her about a quote I saw that I really liked that says "Stand up for what you believe in, even if it means standing alone". She told me that she really liked the quote and that it reminds her of me and the time I stood up to my grandpa in France. She told me that I'm the only one who has ever stood up to him like that about anything and that everyone else is too afraid to stand up for him. She told me that she's so proud of me for standing up to him like that and that what I did was truly "classy" and the right thing to do. I truthfully don't know if she remembers what exactly I was standing up to him about, but I hope she does. Always stand up for what you believe in, for yourself, and for others. It might mean standing alone or stepping far out of your comfort zone, but in the end others will see your courage and strength and even more importantly you will know you did the right thing. 

Camp Twitch and Shout Post #2: My Amazingly Compassionate and Supportive Campers!!!!

As those of you who have been following my blog know, I experienced a very short bout of Coprolalia about a month before camp this year. I'm not sure why it started or what triggered it, but for about a week I would very quietly say the f word. After that one week though, it completely went away and hasn't shown up at all sense then. I was really thankful when it went away, and I think it truly just was a strange fluke!

At camp quite a few of the campers and counselors have Coprolalia, so I was a little nervous that I would pick it up again. The first two days I was around a lot of people with Coprolalia and it seemed to have absolutely no effect on me whatsoever. I was feeling no urges to say curse words even though my other vocal tics were more frequent and being triggered by all the people ticcing around me. Some people even picked up my tics! It was so odd to hear other people doing my tics! One of my tics that a lot of people seemed to pick up was my tic where I say the word "no" and two people even picked up my tic where I say the word "woof".

Anyway, one night a lot of the campers and counselors were sitting in the same area waiting for something called tepee time to start everyone's tics started to go crazy! We all started setting eachother's tics off and my tics of course were being set off too. A lot of people with TS have something called echolalia which means we echo the words of others. This is one of the reasons that it's so easy for those with TS to pick up tics from other people. For me, I usually don't pick up other's tics that often, but sometimes I will hear someone tic or just say something regularly and I will echo the word back regardless of what the word is. It doesn't happen to me now as frequently as it used to when I was young, but every now and then i'll echo back a word or phrase that I hear. Sometimes I will echo back a simple word like "lunch" or a phrase like "let's go to lunch", but sitting there waiting for tepee time to stop, I echoed back fairly loudly a curse word that one of the campers ticced. I had absolutely no idea that I was going to do that and it took me by complete surprise. I was so shocked, mainly because it was completely involuntary and came with no warning and as soon as I realized what I had ticced, I quickly put my hand over my mouth and without thinking I said "oh my gosh, i've never done that before.

Even though I've had a very brief tic of saying the f word very quietly, it seems to have been a fluke and seems to be gone for good, and I have never echoed back a curse word with literally no warning whatsoever. My campers immediately noticed my reaction to my tic and I can only assume I must have looked very shocked and somewhat scared even. My campers were absolutely amazing. It was so sweet how they werew concerned about me and wanted to make sure I was alright. They weren't concerned with what I had ticced (the word was pretty mild compared to other curse words, and even if the tic would have been a more serious curse word, they still probably wouldn't have been concerned about that at all), but instead they were concerned because of my reaction. They wanted to make sure that I was emotionally okay. I told them all that I was fine, and that the tic had just caught me off guard and surprised me. I didn't want them to worry about me.

Even with this explanation though, my campers still wanted to reassure me that everything was okay and that they were there to support me just like I was there to support them. The thing that really stuck out of me is when one of my campers said to me "It's okay, we all have Tourette's here!" That was so sweet of her and it really did make me feel better! I absolutely love how amazing and compassionate all the campers at camp twitch and shout are. They are such sweet kids who care about the other campers and their counselors so much. It was a real blessing to have been able to spend the week with these kids! I always feel like I learn so much from them every year. They are so strong, beautiful, and compassionate, and I know that others out in the world will see that just as I do :)

Day 2

Day two of dealing with the f word tic. I was going to be hanging out with one of my high school friends today so I sent her a text giving her a heads up about my new tic. She texted me back saying "I can't speak for everyone, but I can promise you don't have to worry about it around me." 

Later that day when I went to hang out with her, my new tic did happen many times. She told me not to feel bad about it and that if it would make me feel better she would start saying bad words with me. LOL! I have the best friends! For sure :)

She also told me she was sad that I no longer have my "um woof" tic so frequently anymore. She told me she liked that one! I thought this was funny. I love it when my friends can talk with me about my tics like it's just another normal conversation. It makes me feel like there's no elephant in the room and no subject to tip toe around or be overly sensitive about. I really am so lucky to have amazing friends like her :)

Advice About How To Handle When Your Child, Student, Or Friend's Tics Increase During Stressful or Exciting Times

We're approaching that time where school is coming to an end. For those of us in college we have about a month left, and for those of us who are younger we have about two or two and a half months left. The last month or two of school tends to be a rough time for us ticcers. The local and national TSA branches tend to yield a high volume of calls during the time for no other reason than tics increase during this time! 

There are a few clear reasons why tics increase during the last month or two of school. 

#1: Extra School Work. Teachers tend to assign more homework, essays, and tests during the last month or two of school to wrap up the school year and make sure all the material has been covered. This increases stress and anxiety, which of course increases tics 

#2: Transitions. A lot of kids/young adults with TS have trouble with transitions and the transition from the school year to summer is a big one! Life is transitioning from a very structured routine where you know what to expect every day to a very unstructured routine where suddenly you don't have to wake up at the same time every day, don't have homework, and don't have a set out plan for every day. This kind of transition and even the anticipation of the transition where you are moving from the known to the unknown, can be very stressful and usually increases tics. 

#3: Excitement! Even though the transition from school to summer time can increase stress, it can also increase excitement and excitement incenses tics as i'm sure most of you know. You or your child probably has something to look forward to during summer like a planned vacation, summer camp, family visiting, etc. and this excitement usually increases the tics. 

So with all of these things combined, it's not a surprise that ticcers have a challenging last month or two of the school year. Personally, I have seen my own tics increase a lot over the past week or so, considering I only have a month left in my sophomore year in college. 

Today my tics were especially bad and my day has been filled with involuntary squeals, squeaks, "NO's!", bangs, stomps. I am especially nervous about wrapping up my year long research project which I have to present a poster about at a research symposium, and I am especially excited about my second year as a counselor at camp twitch and shout this summer! 

At the lab at the medical school where I do my research, I was having a lot of high pitched humming and sqeaking tics today. Usually I don't do a lot of my tics in the lab because I'm usually so focused on my research that i'm doing or a conversation i'm having with those who I work with about the research. But today, I was doing a lot of my facial tics, head jerking tics, and high pitched humming and sqeaking tics. 
The post doctoral fellow I work with also has Tourette's and she is someone I admire so much. She's one of the coolest people I know and I always want to impress her and want her to like me. Sometimes I think she has no idea how much I admire her and look up to her. Her tics are more mild than mine, but I see them every now and then. I really appreciate our relationship and appreciate seeing someone who has TS who is so successful and confident about herself and what she does. I really appreciated today how normally she treated my tics. Although I don't tic around her nearly as much as I tic around my friends or in my classes, my tics today didn't phase her at all. She didn't even blink when I came in squeaking and humming today and I really appreciated that. She made me feel normal and like everything was okay even though I was having a rough time with my tics. 

So my advice is this. The best thing you can do for your child, your friend, or who ever you know in your life that has TS is don't draw attention to their increase in tics during this time period. Let them know you accept them and love them no matter if they are having a rough time and exhibiting more tics or not. Treat them like you always do. They are the same person even though they are having more tics and still want and need your support. Let them know in whatever way you can that you are there for them and that the fact they are ticcing more doesn't change how you feel about them and doesn't change their ability to do what they usually do, to be productive members of society, or to just be themselves. 

That was the best thing my post doc could do for me today or any day that I am having more tics. In her own way, she tells me this. Even though she doesn't tell me this verbally, she tells me this with her actions. She doesn't treat me any differently, doesn't look at me any different'y, doesn't even bat an eye or turn around when I squeak or make any type of noise. This is all I want really. To be treated like everyone else even on those days when I am ticcing a lot. 

Meeting my First Person At my College who also has TS!

I just met my first other person at my university who has TS. It makes me feel less alone on campus to know someone personally now who has TS on campus too. Her tics are more mild than mine, and she told me she doesn't really talk about it with other people at school really, but still it makes me feel less alone and it was definitively cool to be walking on campus with her for about 5 minutes (until we had to go separate ways) getting to talk about TS and how we have been involved in our state's TSA's. She was in the first group that ever got trained as youth ambassadors which I think is really cool, especially since when I found out about the Youth ambassador program I was too old for it. I told her how i'm a counselor at camp twitch and shout hoping she would be interested, but she said that if she ever went to camp she would come home crazy. Which is true, I did come home crazy with my tics really bad, but it only lasted a few days until they went back down to their normal level.

Anyway, I thought it was just neat to meet her and talk with her for those 5 minutes. When I think about it those 5 minutes were enough. Enough to make me feel like I am not the only person at my college who has TS and has to deal with tics, enough to let me know I am not alone even though most of the time it feels like I am the only one. It was a nice 5 minutes, a nice conversation, and a nice connection. Even though it was only a 5 minute connection, it was a connection none the less. 

I told myself I wasn't going to message her on facebook afterwards though because I didn't want to ruin things. I didn't want to ruin those 5 minutes, and I know I get upset if I message someone and they never message me back, but then I remembered that I know someone she might know from her hometown TSA and I just couldn't help myself, I had to message her and see if she knew the person I know otherwise it would have nagged at me and nagged at me until I messaged her. Thanks OCD...... anyway, I seem to have this hope that she will message me back and that we will become friends because she just seems like a really cool person regardless of the fact that we both have TS, but I think its probably more likely that those 5 minutes we talked will be the only 5 minutes we ever talk one on one even though we are both on the disability awareness committee and both have TS. I guess I feel this way because I have been feeling pretty low lately and don't want to get my hopes up. I miss my two best friends who of course go to different colleges than I do, I miss the closeness I have with them and feel like although I have a decent amount of friends, I am having trouble finding that closeness in college. I feel like a lot of my friendships here can be very surface level and like I can't talk to them about deeper things and have them understand me like my two best friends from home do. I miss closeness, and understanding, and the ease of making friends that I experienced at camp twitch and shout. It's just not that easy here at college. It's hard. 

Post from Last Week: Joining my College's Disability Awareness Campaign Club!

I joined my college's disability awareness campaign/ club officially yesterday and attended their first meeting! I'm very excited to be involved with this and am looking forward to helping plan their events. Our next event is in November and we will be showing a disability related movie (yet to be decided on yet. we will do that at our next meeting) on the campus in a popular hang out area called Ursa's. I'm excited that i'm getting involved with this and that my university even has this club/campaign. Gives me hope! 

My Cousin is Back Home!

My cousin came home from the hospital tonight! She is at her dad's house. My grandma talked to her on the phone and says she sounds good. I don't know anything else besides this really, but I am so glad she is no longer in the hospital and is in a much better emotional state. I am so glad she is doing better. I was worried that she would be in the hospital for a long time or not be able to get out for some reason. My anxieties about this have been quelled and I really really hope that things only get better for her from here! Thank you all for your thoughts and prayers :) 

Opening Up To Others Leads to Good Things!

As a college student I often wonder, how supportive and open is the college community I live in about disability, psychological disorders, and other struggles? Do people want to talk openly about challenges or struggles they face in their life and are simply looking for an opportunity to open up, or do people want to seem "normal" or like the "typical college student"?  There is no clear cut answer and everyone probably has different feelings about the subject, but I am starting to learn more.

A major learning experience for me happened on Sunday night in the laundry room in my dorm of all places! I often feel like I want to speak openly about my Tourette's, OCD, and other disorders and often do for that matter with close friends, but to what extent do others feel that way? Well, on Sunday night I went to do some laundry and found out the opinions of two others on this subject.

I was in the laundry room doing my laundry when a girl I had met freshman year came in to do laundry as well. I had met her my freshman year in a pre-orientation college program. She asked me how I was, I asked her how she was, and we started to talk about how poorly I was treated at student health services. She immediate connected with my story and began to share her experience with student health services with me. She told me about how she was seeking psychological help from student health services and how after 40 minutes of explaining her symptoms, struggles, and the fact that she needed help, the psychologist told her that at student health they were just regular psychologists and that they didn't know how to deal with her problem. This upset me very much!! After opening up to a stranger for the first time about her mental health, the psychologist had turned her away and offered her no other options or referrals. So we started talking more and we both started opening up to each other more and found out that we both have OCD! This girl is the first person I have met on campus who has OCD like me. She was so glad to hear that I have OCD too and we started sharing experiences about what it was like having OCD as a child, how our symptoms have changed and waxed and waned over the years, and what it's been like trying to get treatment.

We were both so glad to have someone else to talk to! I also told her about my Tourette's, panic attacks, and picking and turns out she also has panic attacks and picking is one of her major OCD problems just like me! I was so glad to meet another person who understands that it is so hard to stop picking your skin no matter how much you will yourself to try to stop or how much you want to stop. This is something that not many people understand because most people have complete control over their mind and body. Not being able to stop yourself from doing something seems so foreign to so many people.

Our conversation continued on in the laundry room for about another hour! We talked about everything and one thing that we agreed on is that we do want to have opportunities to talk about our struggles and not have to hide them and pretend like everything is fine when it's really not. We also agreed that talking about our struggles does not make us OCD or in my case Tourette's. We have OCD or struggle with OCD but we are not OCD itself. She kept expressing to me how much of a relief it was to be having this conversation and how much she was enjoying it! I expressed the same to her as well.

After about an hour of our conversation, a boy walked into the laundry room to do his laundry. We continued to talk and have our conversation even though he came in because we were just so deeply into the conversation that we didn't want to stop. I would have expected the guy to come in, quickly put his clothes in the wash, and then walk out to avoid the intense conversation or to feeling awkward, but to my surprise he stayed. He stood next to his laundry while we kept talking. After about 10 minutes, when we were back on the topic of Tourette's I said "Most people think that people with Tourette's swear all the time and don't know about the other tics, but it's actually just 10% of people with Tourette's who swear". The girl responded with "Oh I've actually never heard that. I've never had that perception that people with Tourette's just swear". I've found that there are some people who really don't have that perception which always is a good thing! Anyway at this point, the guy standing next to us took the opportunity to chime in. I think that is why he stayed, because he wanted to join the conversation. He said "Sorry that I was listening in on your conversation, but yes you're right. Most people do have that perception about Tourette's, but I know it's not true." After adding that bit, he felt comfortable to join the conversation! He started sharing about his own experiences with anxiety and depression, the medication he took for them, and the therapy and struggles he has been thorough.

The conversation continued on for another hour or two, past the time when our laundry was all done, but we just wanted to stay and keep talking and sharing. It was a great bonding experience and gave me even more of a feeling that I am not alone in my struggles. In addition, the girl said to me at one point something that made me very happy! Last year in my Pre-orientation when I had told her about my Tourette's she was inspired by me. She went home and told her mom: "I met this really cool girl at college who has Tourette's and who opened up about it to me, and I just think she's a really neat person and our conversation really touched me". This made me so happy to hear! And gives me even more hope that my OCD and Tourette's is something that I have, but not something that defines me. It is a part of me, and when I open up to people about it and talk with them about what it's like to have Tourette's, it's not so much of a statement about my Tourette's but instead about my personality and who I am as a person.

I made two new great connections with people in my dorm who have similar challenges in life that I do. We all had to come to an acceptance that we may have these conditions for the rest of our lives and reach a point at which we are okay with that. We all had to seek treatment, medication, and answers. We all have to make a decision about who we choose to share our challenges with and how to do so. It is amazing how many people around you struggle with the same things that you do, even if your diagnosis is not exactly the same and even if the others you know don't have any diagnoses at all. Everyone has struggles, everyone has to make a conscious decision of if they want to hide these struggles or if they want to talk about them openly.

My ability to talk about my Tourette's and OCD openly led to me finding another girl with OCD right in my dorm who is so sweet, friendly, and is just a great person over all and also finding a guy in my dorm who struggles with Anxiety and Depression as well. It lead to a fantastic heart-to-heart conversation which left me with a great feeling and two new connections. I invited the girl from the laundry room to come study with me too and she came to study with me and three of my other friends and we had a good time. Tonight I am going to a writing club meeting because she wants me to come with her and I am excited to see her again and go to the writing club!

Opening up about yourself and the more sensitive topics that you might initially stay away from creates friendships and opportunities. When you open up you will be surprised how many people also have been waiting to open up about things in their life too. Good things come out of it! Trust me!