Friday, May 31, 2013

Acceptance from a Parent At Last!

So happy right now! I can’t really write about it in depth because I have to eat dinner in a few minutes, but my dad just told me some really great things. I pretty much haven’t talked to him about my own TS diagnosis since the day I was diagnosed more than two years ago. He said some pretty hurtful things out of fear that day. Today, I learned that it was just out of fear and concern for me that he said those things. I feel so much better after this conversation.
He told me that he now knows what TS really is and at the time he just thought thought TS was shouting out swear words. He told me because of me he has learned what TS really is and now he knows and accepts that I have it. He didn’t know it could be as simple as just clearing your throat, sniffling, or blinking your eyes. He told me that he wouldn’t want me to think of him as someone who was insensitive or not understanding about my situation. He is sensitive and understanding of my situation.
My mom heard all this. Hearing her husband say this must have helped at least to some extent to get though to her.

Tuesday, May 28, 2013

Erasing Limits and Documentary Project Go Public!

After a lot of thought and work into our project, I am proud to announce the release of and The Tourette Syndrome documentary project, a collection of personal stories about Tourette Syndrome!


What is our goal from The Tourette Syndrome Documentary Project?
Our goal from The Tourette Syndrome documentary project is to make a difference in how Tourette Syndrome and other "gifts" are viewed by society. The stories that make up this project are told from mothers, fathers, siblings, teens, and children all living with Tourette Syndrome themselves or living with someone close to them who is affected by Tourette Syndrome.

What is Erasing Limits?
Erasing Limits is a video database of empowering knowledge. Through EL, you can find high quality, informative, and inspirational videos about various disabilities, disorders, and challenges. All videos featured are videos that have been reviewed and are worth watching for anyone wanting more information, support, or encouragement in the video's respective area.

Another note about the Tourette Syndrome documentary project, this is a project that we plan to build on over time. If you sent in a video to participate in the project and you do not see your video up on the website, don't worry! The videos we have released today as part of the project are just the start and if you sent in a video for the project, I promise your video will be edited and put up as part of the project at a later date!

Also, if you wish to submit a video to participate in the growing and ongoing Tourette Syndrome documentary project, please send me a message through facebook or send me an e-mail at

A Friend Close to Home for Summer!

Hi everyone! I am so excited because I just found out that one of my friends that I made this year in a class at college lives only 30 minutes away from me! I didn't know this before and i'm so excited because she told me this today and we are going to make plans to hang out this summer! 

I have never told her that I have TS really but she sat next to me all semester in class and I tic a lot in class! Even though I was ticcing a lot during pretty much every class she kept making it a point to sit next to me every day and started talking to me one day. The first time she talked to me I thought she was talking to someone else because most of the people in my classes who sit near me in class don't know much about me besides that I'm the weird girl who keeps spazzing out in class and can't stop moving. So the first time she said Hi to me and tried talking to me I pretty much ignored her because I thought she was talking to someone else lol! Then she kept persisting and I realized she was talking to me and I responded and started talking to her as well.

Over the course of the semester we became friends. We talked every day in class, walked out of class together, and even met for dinner. She has never asked me why I keep moving and making noises in class and yet treats it like it's normal. I think the reason for this may be that she either has had a friend of family member with TS or another similar problem. I think she knows that I have TS or if she doesn't specifically know this then she just assumes I have some sort of condition and does not have to know exactly what it is to accept me.

She is pretty amazing all in all and I can't wait to hang out with her this summer! I probably at some point will mention to her that I have TS just to let her know that I am not shy about talking about it and that I am okay if she asks me questions or anything like that 

Let's see. I guess I have to pick a nickname for her for this blog. hmmmm.... I think I will call her Ivy. Because she's super smart and Ivy is associated with knowledge :) 

Memorial Day

So yesterday was memorial day! I went to two memorial day "pool" parities.  A sorority pool party and a family pool party! This is the first time in a long while that I have actually been able to go to a pool party wearing a swimming suit and confident that I would be able to go in the pool. My OCD made this impossible in the past and I am so proud of myself that because of how hard I worked and how much of my OCD I was able to overcome during my intensive treatment I will be able to have fun today, do what everyone else is doing, and not have to worry about my OCD getting in the way! I love that I got to wear a cute swimming suit, a sun dress, and flip flops! All things that I would not have been able to do a year ago because of my OCD. 

Even though it ended up raining and no one actually got in to either pool at either party, I was just happy that I could have gotten in the pool if that's what everyone else was doing! I had a fun time at both parties even though it was rainy and yucky outside! We stayed inside for both parties and they were fun. Great food, friends, and family! :) 

Monday, May 20, 2013

Two important conversations with my mom. Accepting TS.

So last night I had a conversation with my mom about TS that really upset both her and myself. We were not communicating well last night and both of us got angry and frustrated. 

I had another conversation with my mom about TS though this morning. I think we really got somewhere this time. I was not ready to just accept that she would never accept that I have TS. So I talked to her about how I was feeling and she talked to me about how she was feeling as well. 

I think we came to a solid understanding. I understand now that her frustration stems from the fact that she didn't know I had TS and its associated conditions as a child. She told me she wished she had known when I was a child that I had TS because then she could have gotten me proper therapy for my sensory processing disorder, OCD, and TS.

It's hard for her to admit to herself that I have TS because that means to her that she knows she could have done so much more for me as a child and she could have been more understanding of my behavior. When I was young she did not understand that my fear of fast movements, sports, elevators, and stairs was a result of my sensory processing disorder. She didn't understand my anxiety and OCD and tics. She thought I wanted attention and that I was being manipulative and she blames herself for thinking this instead of getting me the help I needed.

I went to occupational therapy as a child for a short period of time but she said if she had known what she knows now should could have kept me in OT longer and started me with an OT at even a younger age. She thinks she could have done more for me and she blames herself for not knowing what was going on with her child and she blames my father for not telling her that my behaviors were a result of the genetic predisposition that his family has for TS+.

I think now that we both understand this, we can both understand each other better. I now know that she really knows I have TS+ and has known that deep down for a long time. There is just a part of her that didn't want to believe it because it means that she blamed me as a child for things I could not control. I really think she is moving towards true acceptance though. She knows that I really do have TS+ because she has seen it all along. She knows that I should tell others, including my future boy friends or future husband because she knows first hand what it was like not to know that her husband had TS/OCD and that her children had a strong predisposition for TS/OCD. After this conversation I think we both understand our feelings better and we both understand each other better. We really made progress today and I am very happy about that.

Wednesday, May 15, 2013

Full TS Documentary from Last Year In One Video

Hey guys! I know many of you saw and/or participated in the first TS documentary that I produced last year. For those of you who missed it or if you just want to watch it again, I have compiled the whole 50 minute documentary together in one video with the help of vimeo! No more dealing with having to switch from part 1, to part 2, to part 3, etc. So I would highly suggest watching it or sharing it if you haven't already! The next TS documentary project is going to be even better than this one, but of course the first one is still a very good watch! It's called "Out of Our Control: The Chronicled Lives of Tourette's Syndrome". Just click on the link to view it :)

15 Suggestions for How to Participate in Tourette's Syndrome Awareness Month

Hey everyone! So for many of you today marks the start of your first TS awareness month being diagnosed with TS or having a child diagnosed with TS. TS awareness month is very important for the TS community in terms of spreading awareness and every single person can do something to make a different in terms of spreading the word about TS! Even if you are not new to the TS diagnosis, this may be your first TS awareness month that you feel strongly about participating in. If you are new to TS, new to participating in TS awareness month, or just want some extra suggestions on how to spread awareness this TS awareness month these 15 suggestions may be helpful for you!  So here they are, 15 suggestions for how to participate in TS awareness month and how to start spreading the word!

1.Educate yourself. Educating yourself about what you or your child is going through is the first step. You have to educate yourself before you can educate others about what TS really is and how it really can effect someone's life.  One of the first places to visit for accurate information is the national TSA website:

2.Educate others verbally when asked about TS. When you are asked about TS because someone notices something different about you or your child, it can sometimes be easy to shy away from this opportunity and say something like "don't worry about it" or "it's not your business". While this can sometimes be less difficult than trying to explain, once you are educated about TS you should take questions as an opportunity to educate others about TS. Telling this one person can make a difference! The next time they come across someone who has TS, they will know not to judge them. And next time you come across someone who asks questions, you will feel more comfortable educating them because you have already done so before!

3.Purchase posters, tee-shirts, stickers, or other TS themed items and use them to spread awareness about TS. Put a TS bumper sticker on your car, or wear a TS tee-shirt out in public and if anyone asks you about it, proudly explain why you are wearing the shirt, sporting the bumper sticker, or carrying a TS themed coffee cup. Here are a few places you can purchase TS themed items online. Most of the proceeds from these places go to supporting TS research as well, so just by purchasing them you are contributing to the cause!

4.Donate money to the national Tourette's Syndrome association, TEAM TSA, Camp Twitch and Shout, The Brad Cohen Tourette Foundation, or other TS related causes.
Here is where you can donate online to  TEAM TSA:
Here is where you can donate to the national TSA :
Here is where you can donate to camp twitch and shout:
Here is where you can donate to The Brad Cohen Tourette Foundation:

5.Post TS facts, pictures, or videos on your facebook page, twitter, tumblr, or other social networking site

6.Make a video or a few videos about living with TS and post them on youtube or facebook to educate others.

7.Submit a video to us for our ongoing Tourette's Syndrome documentary project. Although we are going to be releasing the website and many videos from the project near the end of TS awareness month, it is going to be an ongoing project so video submissions will always be encouraged and appreciated. For instructions on how to film and submit the video visit:

8.Submit artwork/drawings to our page's TS awareness month drawing contest. Simply draw/ have your child draw "what it is like to have TS" and then send it to and it will be posted on the page and winners and prizes will be announced at the end of the month.

9.Share your story with us! Write out your TS story and also send pictures of youself/your child. Your story will be shared on the page and on my blog and one more story will be out there!

10.Start a blog, facebook page, youtube channel, etc of your own and start sharing your experiances, spreading TS awareness, and getting the word out there through your own personal experience.

11.Make your own TS awareness posters or digital image and then post them on social media sites or tape them up around your area. Here is one of my favorite sites that I use to make TS awareness posters/ digital images:

12.Start your own TS awareness project or initiative. Get creative!

13.Attend your local TSA Chapter or TS support group. Become part of the TS community. If there is no TSA Chapter or  support group in your area, start one!

14.Orginize your own TS walk/run/event in your area and donate the proceeds to a TS cause!

15.Or just think of your own amazing idea to spread the word about TS this month! You can do it! 

Monday, May 13, 2013

News about the Tourette's Syndrome Documentary Project and More

Good and major news everyone! Logan and I will be releasing the long awaited Tourette's Syndrome Documentary Project around the end of this month in honor of Tourette's Syndrome awareness month! Along with the documentary project, Logan and I will also be releasing our website that the documentary project will be featured on. Basically the website is going to be a video database where people can find video clips and full length documentaries that are about disabilities, disorders, and other life challenges. Not only will these videos be providing knowledge, but they will also be empowering and the source of great support. These videos will let people with all sorts of different challenges that they are NOT alone. Of course since Logan and I both have TS, Tourette's Syndrome will be a special focus of many sections of the website so there will be many video resources for those of you in this group! I hope you all are as excited as I am! I can't wait to get all of your feedback on this project that Logan and I have spent so much time and effort to create for you guys. More information to come later this month