TS Awareness Month Project Filming Instructions

REMEMBER, when filming, if you are filming with a phone or tablet please turn it sideways so that when it is transferred to the computer it will take up the whole screen! Also try to film in an area with good lighting and with minimal background clutter. It's sometimes a good idea to film against a wall, sitting in a chair that's against a wall, or sitting at a clean table or on a couch with minimal clutter. Also be aware that if you are filming outside (which can be a very good backround!) that if there is wind , cars driving by, or a lawn mower going, the audio will not come though!

Uploading Instructions: Once you are done filming, upload the video(s) to youtube and click the box that says unlisted. Then send me the link to your videos! If you have specific uploading questions, feel free to ask me!

There are three ways you can help out! You can do one of these options, two of these options, or all three!

1. Answer the questions below in a video
2. Take a video of your tics or your child's tics

Questions For Kids: (In terms of lighting, background, closeness to the face your video should look something like this: https://vimeo.com/93571299. Film close up to the face, try to make the video as pretty and professional looking as possible!!! Look at the questions ahead of time and plan out a background/ place to film.) 

State your name, age and that you have Tourette Syndrome

How would you describe what Tourette's Syndrome is to someone who doesn't know much about it?

What would you say to another kid who was recently diagnosed with TS?

What are some bad things about having TS?

What are some good things about having TS?

How does having TS make you feel/ If you had to describe what it's like to have TS in one sentence how would you describe it?

Do you ever get bullied because of your TS?

Has something funny ever happened because of one of your tics?

What's something you've said in the past about having TS such as a quote or a statement? Or make up your own quote now! Say it in the video. (if you need to think on this one for a little while that's okay!) Some examples from some other kids are "when my tics first appeared they were very bad. I thought I was dying. My whole body hurt from the inside out" and  "My tics make my special, that's how I like to think of it"

Tell a story of something that happened because of your tics. It could be a funny story, a sad story, something that made you smile, or any other type of story that relates to your tics and something you have experienced as a result.

Do you have any associated conditons with your TS like ADHD, OCD, or anxiety? What is that like for you? What are some of the things you have to deal with because of that?

How do other people react to your tics?

What is it like for you to tic in public?

What is it like for you to tic in school?

What are some of your hobbies? What are you passionate about? What are some of your accomplishments? 

These are suggested questions! Try to answer them all, but feel free to skip over any, add in your own questions, or talk about whatever you like!

How does having TS make you feel/ If you had to describe what it's like to have TS in one sentence how would you describe it?

Are your friends understanding about your TS? Are your teachers? Are your other family members?

What's something you've said in the past about having TS such as a quote or a statement? Or make up your own quote now! Say it in the video. (if you need to think on this one for a little while that's okay!) Some examples from some other kids are "when my tics first appeared they were very bad. I thought I was dying. My whole body hurt from the inside out" and  "My tics make my special, that's how I like to think of it"

Tell a story of something that happened because of your tics. It could be a funny story, a sad story, something that made you smile, or any other type of story that relates to your tics and something you have experienced as a result.

How do other people react to your tics?

What is it like for you to tic in public? How do you deal with ticcing in public? 

Also if you are a girl, answer these questions: 

"What's it like being a girl and having TS?" 

"Do you think it's important to let others know that girls have TS too? Why?

Add in anything you think you should say about being a girl and having TS!

Questions for Teens/Adults (Try to make the video as pretty and professional looking as possible!!! It might be a good idea to look at the questions ahead of time and also plan out a background/ place to film ahead of time. Also try to film close up to the face. For a good example of what your video should look similar too click here: https://vimeo.com/93571299): 

Say your name, and that you have Tourette’s Syndrome

What was it like for you when you were first diagnosed with TS?

What are some of your tics?

Do you have any tics that hurt you? 

What does a tic feel like to you?

What do you want other people to know about having TS? 

 Do you have any associated conditions? If so, what are they?

  How do your associated conditions affect you?

How do you stay positive when you are having a difficult time in school or in general with your TS?

Have you had any negative reactions? What were they? 

How do you deal with negative reactions?

What is it like for you to tic in public? How do you deal with ticcing in public?

What was school like for you when you were a kid (elementary school, middle school, high school, college)?

What is the hardest part of having Tourette’s?

 What is the best part? 

What are some of your successes you have had?
 
What are some of your challenges you have had? 

What is your profession/job now?

What advice would you give to someone who was just diagnosed with TS?

Tell a story of when someone had a reaction that you did not expect 

Tell a story about a time when your TS caused a particularly funny, interesting, upsetting, or surprising situation.

What would you want other people who don’t have TS to know about having TS?

Anything else you want to say about having TS?

Also if you are a girl, answer these questions: 

"What's it like being a girl and having TS?" 

"Do you think it's important to let others know that girls have TS too? Why?

Add in anything you think you should say about being a girl and having TS!

I'm just too excited for Camp Twitch and Shout!

Camp Twitch and Shout is in 2 months and 12 days! I'm so excited and I am having trouble waiting patiently. I want camp to be just a week from now, or tomorrow! I want to know what cabin i'm going to be assigned to and who my co-counselors will be this year! I want to buy my plane tickets and start packing! Anyone have any suggestions on how to wait more patiently?! I'm just too excited!!!

Exhausted from ticcing

I'm not feeling very well tonight. My body is so exhausted from ticcing. My tics have been bad for the past couple of days and i've had a lot of hitting tics, jerking tics, stomping tics and vocal tics. And my middle finger tic seems to have come back so that's just great. My friends laugh at it and make light of it so that always helps, but overall i'm just tired and hurting from ticcing. I know they will get better as soon as i'm officially done with school though .

My New Hitting Tic

My newest tic is a rough one I have to admit. I've had it for three days now and it's not the easiest to deal with. I hit myself in the chest with my hand which makes a loud slapping noise and I also have a fairly loud vocal tic that usually happens at the same time as well. Besides leaving my chest sore, it's also made my friends jump a few times because it's so sudden, loud, and forceful.

It hasn't stopped my from having a good weekend though or doing the things I normally do. On Friday I went to an outdoor concert on campus with five of my friends and today I went to an on campus carnival and went shopping at the mall with two of my friends. I was doing my new tic at pretty much all of these events and although I got quite a few stares, I'm used to it for the most part so it didn't bother me.

I also felt a lot more comfortable and okay with the fact that I was ticcing a lot in public because I had my TS medical ID card with me. I haven't had the need to pull it out or use it in any other way yet because no one has approached me about my tics in public, but I still felt better having it. I knew that if I needed to, I could pull the card out and also explain my TS verbally and they would understand or at least leave me alone. Knowing this made my confidence lever better than it would have usually been in public this weekend which was really helpful.

I don't know how long I'll have this tic and I'm not too thrilled with going back to classes on Monday with it, but I know my classmates and teachers will understand. They have all been so understanding and make me feel comfortable in the classroom regardless of my tics.

Also this is kind of unrelated, but on Friday one of my friends commented on another tic that popped up and told me it was cute and she liked it. It was a vocal tic where I said "rawr". My other friend said I should do it in class, and I laughed and said I probably will end up doing it in class at some point. I like when my friends are able to talk with me and make light of my tics. It makes me feel like it's not this big elephant in the room. It makes me feel like it's something we can talk about and it's not such a big deal.

Unable to sleep...

It's been a rough week of tics, and after picking up a tic where I slap myself in the chest today I was really for a full nights rest. I woke up at 4am though and have been ticcing and unable to go back to sleep and it's now almost 6am....ah the joy's of Tourette's.....

Understanding Friends Help When Tics Are Rough

And the story of my heightened level of tics due to the stress and excitement of the last month of school continues, lol. I was watching a TV show with three of my friends and one of my friends left her pretty much empty orange juice cup on the table in front of us. Most of the time when we have open containers on the table, my friends are careful to put the lids on them due to the fact that one of my tics includes knocking things off tables and counters, which has ended in a messy situation quite a few times. But there was really only a few drops of orange juice left and I hadn't had that tic in little while.

The tic surprised me though even though I thought I could fight it, in the end, I ended up knocking over the cup with my fist forcefully. It ended up flying onto my friends lap which I felt really bad about. I immediately got up, started apologizing profusely, and went to throw the orange juice cup out. My friend was very understanding and when I kept saying "i'm sorry" she kept assuring me it was okay in a kind voice which let me know she knew it was a tic and knew I couldn't help it.

Friends like this and people who understand are what get me through these times when my tics are bad. I've found mostly every time that when you explain yourself and give people the opportunity to be compassionate, they typically are :)

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. 

OCD is Exhausting....

Sometimes I spend time obsessing over my Tourette's because of my OCD. Of course it's a vicious cycle of worry that helps no one, but it's just so hard to stop myself sometimes. This morning was one of those days. I stand in the shower thinking to myself that it's my fault I have Tourette's, that somehow I gave it too myself, and that things could have been different if I thought about it differently. I know medically this isn't true at all, but it's easy for me to get stuck on these thoughts. Then I remember all the tics I had as a kid before I even knew what Tourette's was. I try to convince myself that I did nothing wrong, I didn't give myself Tourette's, that would be impossible. I hate OCD, it's so irrational. Then I start thinking that I somehow gave myself OCD by wanting to have it....why would I ever want to have OCD?!? My dad and all of his brothers have OCD, and my brother has OCD and ADHD, it's genetic! My first cousin has Tourette's for goodness sake! On top of that I have video proof of myself ticcing at age 3 and 4 and countless pictures caught mid tic or of my raw and damaged lips from my picking, biting, and licking tics. When I watch these videos, it helps me remember that I did have tics as a child, but then I start thinking that maybe only I see the tics in these videos and maybe others wouldn't think they were tics.....OCD is exhausting..... https://www.youtube.com/watch?v=dgQypFqw89Y&feature=youtu.be

Tourette Syndrome Medical Card

Finally have my own official Tourette Syndrome Medical card! I've wanted one of these for a while and I got one today at the  TSA conference! Yay! Although I typically just tell people verbally that I have Tourette, it will make me more comfortable to have it on hand and plus I think it's cool :) 

If you want one of your own, you can order them from the national TSA website at: http://store.tsa-usa.org/brochures--flyers--pins--wristbands.html

Disinhibition

How many of you or your children experience disinhabition? Disinhabition is a tic-like phenomenon where you have the urge to do something you shouldn't such as touch a hot stove, run into the street, or do something else you know you shouldn't do. When I was younger I had bad disinhibition where I would put my hand in water glasses at the dinner table even though my parents had told me not too or I would grab at people's hair or touch dogs in the nose in a way that might bother them. Now, I have disinhabition urges that I don't act on but they sometimes scare me or surprise me.

For example, yesterday I was cutting out a tag in my shirt and left my scissors out on my dresser. Today, I walked by my dresser and had the sudden urge to pick up my scissors and cut off a large chunk of hair. Of course I didn't actually act on this urge but it sure did surprise me. When getting on the metro, I also have the urge/ image of myself jumping in front of it and onto the tracks right as it is coming at me full speed. Same thing, of course I wouldn't ever actually act on the urge. I don't want jump in front of the metro, but my body none the less has the urge to. That's just disinhibition for you.

When I told my friend today about this she said that it sounded really scary. She said she couldn't even imagine wanting to do something that she know she shouldn't do or having her body tell her to do something that would surprise her. It's funny because I half expected her to say "Oh yeah, that happens to me too sometimes". Living in this body and having these urges for my entire life is something that is so normal for me that I expect other people to have the same urges or feel the same way. Of course it's my Tourette's and other people without Tourette's don't experience these things that I do, but that does really come as a surprise to me sometimes because it's just so normal for me.