Friday, August 23, 2013

Second Meeting with A Professor about Tourette's

Second professor down, three more to go! The second professor I met with was just as fantastic as the first! She was incredibly understanding, and was also curious about Tourette's as well. She made more reassurance statements than my last professor because I think I looked nervous today. I have been ticcing a lot today and was ticcing in her office more as well than in the last professors office.

Her reassurance statements really did help me! She said things like "we're on the same page" and "i'm really so glad you came in to talk to me about this because it really helps me to know" and "you should find another person with Tourette's on campus so you both can go around and educate the entire campus!" and "you are really good at educating about Tourette's and you are so confident about it too!" She was really so sweet and amazing. I can't wait to be in her class. She also drew out a sketch of the lecture hall and helped me find the best place for me to sit considering the fact that I like to sit near the front so I can pay attention and also have an easy way to step out of the room when my tics get bad. She told me I could sit up front by her and the TA's any time which made me feel really good and like she had my back :)

She was confident, kind, approachable, fun,  and in no way scary at all. I can't wait to forge an even better relationship with her! And one of my suite mates and very good friends is in her advisory which we figured out while we were meeting :)

I also handed her one of the medical ID cards that I made which she thought was great and helpful as well :)

Thursday, August 22, 2013

First Meeting of the Year with My Creative Writing Professor: Educating your Professor's/Teachers about Tourette's

I just finished meeting with my creative writing professor about my Tourette's. She is the first professor so far in college that I have talked to personally about Tourette's and it could not have gone better! 

We eased into the subject by first talking about introduction things like some of the things I was looking forward to about the class and some of the changes that had been made to the clas
s this year. Then when I started telling her about my accommodations and about my Tourette's it felt like we weren't strangers. I was proud of the way I told her about my tics and how Tourette's would effect my in the classroom. I never faltered, never hesitated, and never felt like I was at a loss for words. I gave her the basic explanation, handed her one of my make shift Tourette's medical information cards that I made this morning, and then told her about my accommodations and what would help me in class.

She responded so well. She was genuinely curious about my Tourette's, how it affects me, and how it will affect me in class. She was not afraid to ask me questions which I think is because I appeared to be so comfortable and confident talking about it. She asked me several questions such as "are the tics distressing to you?" "If this is okay to ask, what are some of your tics?" (because I wasn't ticcing very much when I met with her), "how long have you had Tourette's?" and other questions as well. She seemed curious in a kind way, and eager to understand and help me in any way she could in class.

The basics that I found were most important for me to explain to a professor were:

-That it's a neurological condition that causes tics which are movements and sounds that my body does that I can't control.
-That the severity of my tics can change from day to day or from hour to hour which means some times I am ticcing a lot but sometimes I am hardly ticcing at all.
-That my tics can change so while one day I may be doing a vocal tic that sounds like a bark the next day I may be doing a completely new one that i've never had before.
-That 10% of people with Tourette's have swearing tics and that although I have vocal tics, I don't have swearing tics.
-That when my tics get bad it is helpful for both me and the class for me to step out of the room and walk around for a little bit then come back.
-That sometimes my tics may look purposeful, but they are not and that they are something that I do not choose to do and are essentially involuntary.

Those were the basics! Overall the meeting went really well. We also ended up talking about other things like the literary magazine, writing in general, high school, the other classes i'm taking this year, camp twitch and shout, and my major which is philosophy-neuroscience-psychology. I feel like I made a connection with my professor already and school hasn't even started yet.

My advice to high school students and college students with TS would be to talk to your teachers before the first day of classes. First of all, they will understand your Tourette's and tics going in so there will be no surprises. And second of all you will be one of the first students of the year that your professor gets to meet which means you will start out school on the right foot with a connection to the professor that the other students don't have yet. This is the first step to creating a relationship with your professor and you will be way ahead of the other students. Also when going in to talk about Tourette's, don't just talk about Tourette's! Let your professor or teacher get to know you as a person. Let them get to know how amazing you are and what a bright personality you have. Let them know about your interests and hobbies and favorite classes. Also get to know them! Show that you are interested in their research, their projects, their class, and/or their subjects of interest. Your teacher/professor will love this and will think so highly of you after the meeting! Trust me! 


TS Medical ID Cards


This morning I was at FedEx kinkos making medical ID cards to hand to my professors and to give to the kids and teens in my  TSA events group. I used the template from the national TSA website. I would have ordered them from national TSA but I needed them sooner than they could come in the mail. Mine look far less professional than the ones you can order from the TSA online store by clicking on this link: http://store.tsa-usa.org/brochures--flyers--pins--wristbands.html. Mine do however get the information across but I will definitely be ordering some professional looking ones soon! I handed my version of the card to the first professor I had a meeting with today about my Tourette's. The card seemed to help me feel more sure about myself when talking to her about it because I felt like I had real medical information backing what I was explaining about Tourette's. I will post about my meeting with the professor next!

This is what they look like: 



Tuesday, August 20, 2013

E-mailing my Professors about Meeting to Talk about Tourette's

So today I decided that I was going to e-mail my professors for next semester about meeting with them before classes start about my Tourette's and accommodations. I was really nervous just to send out the e-mails, but I did it! And one of my professors already sent a very warm response back!

This is basically the e-mail I sent to my professors: 

"Hi! My name is Ruthie and I am a sophomore. I'm excited to be in your class this Fall and I was wondering if there might be a time that I could stop by your office before our first class. I usually like to meet my professors before classes start so that I can introduce myself and tell you a little bit about a condition I have called Tourette's Syndrome. This helps to avoid any possible confusion on our first day of class and going forward.

I also receive accommodations through disability resources and I can hand you a copy of my accommodations when I come in to meet you. Is there a time I could stop by your office before our first class that would work for you? Please let me know! I'm looking forward to meeting you. Thank you!"

and this is the e-mail that one of my professors already sent back:

"Dear Ruthie,

Thanks for your e-mail and thanks for being pro-active about this! I'll be meeting with the two TAs from the course (who will be very active with the students, since right now there is 105 in the course!) next Monday at 2 p.m. Can you perhaps come then and meet us? I hope you don't mind that they're there; but I think it's important for them to learn about you as well."

I think the e-mail she sent back was great! I will be meeting with her and the TA's for the class on Monday. The e-mail was warm in nature and lets me know that she is actually glad I am being proactive about e-mailing her about my Tourette's and also lets me know that is actually wants to learn about Tourette's and how it affects me in class.

Thought this might be helpful for all of you to read since you guys may be dealing with similar back to school things! 

I will let you know when my other professors respond to the e-mails and I will also let you guys know how my meeting goes with them 

I'm super nervous but I think I can do it! 

Monday, August 19, 2013

Anticipating Going Back to College For Sophomore year

Sometimes I feel that my emotions aren't real. I feel nervous about something or unhappy about something or stressed but I feel like I try to block that emotion out and not feel it. I think i'm just so used to blocking my emotions about things that it's actually only rarely that I feel an emotion to it's full extent. 

In my life I have had to do so much emotion blocking and distancing myself from a situation that it is almost second nature. I had to distance myself when I was bullied in elementary school about my tics, and when after I was diagnosed my parent's didn't really accept or want to believe that I have Tourette's. I have to distance myself from the stares when I am ticcing, washing my hands for too long in the bathroom, or panicking and having anxiety in a store and am not acting like myself at all.

Distancing myself and blocking my emotions is something I do on a daily basis without even consciously thinking about it. Today though is one of those rare days where I cannot distance myself or block out my emotions. I am nervous, scared, and worried about going back to college and having to meet new people and be in new classes and have to educate over and over again about my Tourette's for gosh knows how long. I am nervous and scared and worried in a real way that I can't block out. I don't want to go out of the house today which is really the opposite of what I am usually like because I am usually always wanting to be on the go or always doing something.

When an emotion like this hits me hard, I feel like I am "stuck" in a way and don't really want to do much of anything. Even writing this blog post is something I originally didn't want to do. It feels like someone flipped a switch in my brain and put me in a completely different mental state than I was yesterday. Yesterday I was so excited about going back to college and seeing my friends and was actually excited about getting to educate about my Tourette's. I still feel that to some extent, but mostly I feel scared and anxious now.

I wish I could flip the switch back to where I was yesterday, but it's like I can't find the switch right now. I know though that this too will pass and that probably in a day or two I will find that switch. It will help a lot when I actually move back in with my friends from college and start getting into it. The worst part of anything for me is the anticipation and I have to keep that in mind in times like these. The anxiety and emotions that come with anticipation of something that's coming up is always 100% worse than the actual situation itself. When i'm in the situation I tend to be fine, but it never feels like it's going to be that way. I just want someone to rip of the band-aid right now though. I am fed up with the anticipation and the waiting! Four more days though until I move back which feels both like a very long time and a very short time.


Distancing myself and blocking my emotions is something I do on a daily basis without even consciously thinking about it. Today though is one of those rare days where I cannot distance myself or block out my emotions. I am nervous, scared, and worried about going back to college and having to meet new people and be in new classes and have to educate over and over again about my Tourette's for gosh knows how long. I am nervous and scared and worried in a real way that I can't block out. I don't want to go out of the house today which is really the opposite of what I am usually like because I am usually always wanting to be on the go or always doing something. 


When an emotion like this hits me hard, I feel like I am "stuck" in a way and don't really want to do much of anything. Even writing this blog post is something I originally didn't want to do. It feels like someone flipped a switch in my brain and put me in a completely different mental state than I was yesterday. Yesterday I was so excited about going back to college and seeing my friends and was actually excited about getting to educate about my Tourette's. I still feel that to some extent, but mostly I feel scared and anxious now. 
I wish I could flip the switch back to where I was yesterday, but it's like I can't find the switch right now. I know though that this too will pass and that probably in a day or two I will find that switch. It will help a lot when I actually move back in with my friends from college and start getting into it. The worst part of anything for me is the anticipation and I have to keep that in mind in times like these. The anxiety and emotions that come with anticipation of something that's coming up is always 100% worse than the actual situation itself. When i'm in the situation I tend to be fine, but it never feels like it's going to be that way. I just want someone to rip of the band-aid right now though. I am fed up with the anticipation and the waiting! Four more days though until I move back which feels both like a very long time and a very short time.

Sunday, August 18, 2013

A Hidden Treasure

Today I went with my grandma to have brunch. She has been wanting to tell me the story of her relationship with her friend who recently passed away from cancer. She wants me to write out the story since I am minoring in creative writing in college and I am honored. After she told me the story, we visited the cemetery where she is buried. In the cemetery I saw this poem on the back of a women's grave. The woman passed away when she was only 32, and was both a mother and a wife. Her name is Stephanie. I say "is" instead of was because I know that is what she would want me to say.

I wanted to share the poem here to honor the memory of Stephanie, a women who I have never met but know I would have had a lot in common with just based on her poem that was written on the back of her grave stone. I believe she may have written the poem herself, but I'm not 100% sure. All I know is that I can't find the poem anywhere else but on this Stephanie's grave which makes it all the more special.

It is a simple poem, but sometimes the simple things can really be the most complex. It's a hidden treasure that I am honored to have stumbled upon and am honored to share. Maybe someday I can do something with it, such as have it published under her name so that all the world would have an opportunity to read it. Poems hold hold so much power and beauty within them. I feel like I know Stephanie in my heart.

Here is the picture I took of the back of her grave and also below is the poem typed out in case anyone has trouble reading the text in the picture.



"I am who I am.
Take me for that.
I won't change for you,
Because I like being me.
No matter how I compare to others.
I'm here,
Alive and ready
for any obstacles.
I'm happy being.
Living and wondering.
I don't want to change.
I'm in love with the world
And its surprises.
Think of me as I am
Because I'll always be this way.
Just living, being
I am."
-Stephanie Myers 1978

Thursday, August 15, 2013

Camp Twitch and Shout Moment #3: Amazing Nurses Yet Again, A Tourette's and OCD Moment

So when I was at camp twitch and shout, I wrote a list of "camp moments" on my phone so that I would remember stories from camp that I wanted to write out on my blog.  For a while there writing these moments out would probably have made me cry because I missed camp so much! I still miss camp SO MUCH but I think now writing out these moments won't make me cry anymore but will make me remember the amazing times I had at camp. So, I'm going to write another one out on this post.

Camp Twitch and Shout Moment #3: Amazing Nurses Yet Again, A Tourette's and OCD Moment


This is another amazing camp moment that made me smile. On the second to last day of camp we had something called Wacky Olimptics. I had a lot of fun during the pre-Wacky Olimptics game because it was basically just like a giant scavenger hunt and I got to go with a group of three amazing campers to supervise them. Two of the campers were younger girl campers who weren't in my cabin but who I had the opportunity to get really close to throughout the time I spent at camp. The other one was a younger girl camper too who was quite adorable! I had lots of fun searching the woods with them for "ninjas", getting to stop by the petting zoo, solving riddles from the riddlers (camp twin lakes staff dressed up in funny costumes that we would run into and then have to solve their riddles to go past them), and giving piggy back rides to one of the little ones. 

After the pre-game was over, we all went to a field for the Wacky Olimptics. The kids loved playing the games there such as the apple sauce relay, the shaving creme hula hoop pass, and the many other fun games! 


The whole event was so exciting that loud with all the kids running around that it triggered my punching tic really badly. So for the majority of the games, I was punching myself in the stomach. That was not so much a fun part and ended up really really hurting! 


I was glad when the punching tic stopped a little bit after the Wacky Olimptics, but I was left with a really sore stomach and a decently sized bruise. So being my typical self and doing what i'm used to doing, I tried to, for lack of better words, "suck it up" and I went up until lunch in a lot of pain every time I tried to sit down, stand up, or move into a different position really. I also kept having OCD thoughts and fears that I had somehow managed to damage my internal organs with the punching tic or that I was bleeding internally slowly but surely. I was in pain every time I tried to move and my anxiety my through the roof and I remembered "Hey! I'm at a Tourette's camp! I bet I could have the nurse give me some Advil for the pain and maybe just maybe she could give the bruise a quick look and reassure me that I didn't actually damage any internal organs and then I know my day will get a lot better. 


So that's what I did. I went into the health lodge and for the first time in my life, I didn't have to lie and say I have a headache to get Advil for pain caused by tics. I didn't have to go through the rest of the day worrying about my internal organs either! The nurse was great. I told her that I had had a punching tic in the morning, that it would be great if I could get some advil for the pain, and that I know it sounds silly but it would be great if someone could just look at my stomach for a short second because my OCD was making me worry that I had damaged my internal organs. I was kind of half expecting the response I would actually get in the real world which would be something like a strange very confused stare. But the nurse was incredible! She smiled at me in the most friendly and reassuring way with not even a half a second of a confused look and gave me the Advil. Then she told me she was going to get the doctor to look at my stomach to make me feel better.


I waited in the waiting area for just a little bit and then the doctor called me into the room and looked at my stomach and both him and the nurse reassured me in the most perfect way possible that it would have been impossible for me to damage my internal organs or have caused internal bleeding because in the area that I punched there are simple no internal organs located there. I was able to actually relax and enjoy the rest of my day instead of worrying about the silly things my OCD makes me worry about. 

The Nurse also told me to come back later for more Advil if it kept hurting and I did go back later that evening for more Advil. The Advil did help to some extent but what helped the most was their kindness, understanding, and reassurance. There is no where else like camp and this right here is one of the reasons no doubt :) 








Response from My RA :)

For those of you who read the message I sent to my RA about my Tourette's, I just wanted to let you know that she responded and was great about it! She was glad I told her about my Tourette's and at the same time didn't seem scared or off put by it at all in her message. Here is the message she sent me back: 

"It sounds like you've had an awesome summer!! It's really cool that you're so involved! You'll learn a lot about me over the next year but a little sneak preview: I'm a psych and bio double major, studying premed. I have a kitten named pepper who I'm obsessed with (I'm a real life cat lady) My favorite food is also sushi!! And I'm currently at camp for RA training haha so I apologize if my message seems short.

Anyways, thanks so much for letting me know about all of this. We had a few speakers come to my high school to talk about the subject so I know a little bit and I appreciate everything you've told me as well. I really can't see any issues arising on the floor but definitely know that I'm someone you can come to to discuss if anything does come up. If there's anything you need, please feel free to reach out to me! Have an amazing last few weeks of summer and can't wait to meet you soon!"

One of My Amazing Campers from Camp Twitch and Shout!


This is one of my amazing campers! She's all grown up now since the video was from 5 years ago, the first year of camp twitch and shout! 5 years on the camp is still going strong and this girl and many of the original campers and counselors from the first year still go to the camp every year! I can't believe how grown up this girl is but she is still as adorable as she was in the video! It's so funny because i've probably watched camp twitch and shout the movie (the video this little clip is from) 5 or 6 times and I would go back and watch this part because I thought she was so cute! So funny that she ended up being my camper and she loved it when I told her the story of how I would go back to the video just to watch her parts in it. We had many good times together at camp and I was always the one who would take her and her friend to get tea at night before bed to help them sleep. She is a sweetie and I miss her and my other campers and co-counselors so much! Can't wait to see them all again next year 

video

Tuesday, August 13, 2013

Educating my RA about my Tourette's!

Hey guys! I just sent this message about my Tourette's to the RA (Residential Adviser) who is a senior at my college and who will be living on my floor next year supervising us crazy sophomores! She seems like she is going to be really nice! Let me know what you think about the message I sent her. I tried to make it more informal but that kind of didn't work out because I talk pretty formally in general if you can't tell from the way I right! Guess it was just the way I was raised! No slang in my house, lol.

"My name is Ruthie, I am a PNP major and a creative writing minor. I love poetry, dogs (I have a golden doodle named Brandy who is super cute!), being a counselor at summer camp for kids in Georgia, and hanging out with friends. My favorite food is either Sushi or Mexican food and I'm in a sorority on campus. The reason I wanted to send you this message though is to let you know about a condition I have called Tourette's Syndrome, but first I wanted to let you know a little about myself because having Tourette's isn't something I use to describe myself. It's not something that defines me but it's something that's been a big part of my life.

Most of the people on our floor already know me and know about my Tourette's since we all pretty much lived together last year which is great! But there are also new people on the floor this year. So It'll be really helpful for you to know about my Tourette's and what it is since you're my RA and since at some point a person who doesn't know me may very well approach you to either make a noise complaint or express concern. I promise you that my tics bother me more than they bother anyone else, and that they are something I can't control, not something I do to purposely bother other people.

So anyway here are some basics! Tourette's is a neurological disorder that causes movements and noises that are involuntary called tics. When I tic, it's not my choice to tic, and I'm not intending to disturb anyone; it's just something that happens to my body that I can't control. A lot of people think that everyone with Tourette's swears uncontrollably but that's acctually only about 10% of people with Tourette's, so that part is pretty rare. I don't have the kind of Tourette's that causes you to swear. I have motor (physical) tics and noise tics.

Tics can and do change, so the tics I have right now could go away and be replaced by other new tics at any time. Some tend to stick around while others tend to get replaced. Tics also vary in severity from hour to hour and day to day. I don’t tic all the time and it may just so be that you never will notice, see, or hear a tic from me. It may be though that you will see a lot of tics from me. It really just depends on a number of different things. Some days I'm ticcing a lot and some days I don't tic much at all.

Some of my motor tics right now are head movements, facial twitches, blinking and rolling my eyes, body jerks, hitting myself in the chest or stomach, falling on the floor, and the general inability to keep still at times . Some of my vocal tics right now sound like coughs, sneezes, or like sniffling, and some of my other vocal tics sound like dog barks or whimpers, squeals, squeaks, or generally random noises.

Now I know some of these things may sound pretty intense but like I said before, it may just be that you don't really see many of my tics. I just want to let you know about them so that in case you do see them or get questions from anyone else on the floor about it you'll know what's going on. I promise you that even when my more serious looking tics happen, like falling on the ground, there no need to call EST or anything like that! I have been dealing with Tourette's pretty much all my life so I know exactly what I need to do when this happens. I actually seriously doubt that you will see any of my falling tics or that there would ever be a situation that would warrant even considering calling EST, but it has happened before where my tics end up looking pretty serious so I just want to make you aware of it. I just never know what Tourette's is going to throw at me next sometimes. It likes to surprise me, lol.

Also I'm NOT shy about talking about Tourette's at all! I'm a counselor at a camp for kids with Tourette's in Georgia in the summer and am very involved in leadership with the Tourette's Syndrome Association during the year. So I do a lot of advocating for myself and for others so please feel free to ask me any questions at any time either in person or over facebook. Really, don't hesitate to ask any questions! I've heard pretty much all the questions out there. Also sometimes my noises can be silly or funny so please do not feel embarrassed for laughing once in a while! Truthfully when my friends joke with me or laugh about my tics, it makes me feel more at ease and more relaxed. Most of the time the best policy though is to just ignore them!

Oh and if you want to find more info on Tourette's in addition to asking me questions, feel free to visit the National Tourette's Syndrome Associations website: http://www.tsa-usa.org/
So thanks for reading this message! Sorry it is kind of long but it's hard to fit all the things I should tell someone about Tourette's into a short message. I gave you the important basics though! Anyway, I'm really looking forward to meeting you and the couple of new people on our floor who I haven't met yet as well!"

Not a Great Day

Ughhhh....i'm having so many tics today. I think i've had over 100 hitting tics today which is totally unusual for me since those are usually pretty rare tics for me and tops I will usually have between 1-3 hitting tics per week. Today though i'm pretty sore from all of the hitting tics in so many places..... 

When this happens I start to think "Why the heck am I not on Tourette's medication?" I have been wanting to avoid the side effects really and the negative things this kind of medication could do to my health. Hopefully this is just a reaction to my excitement and nerves though about moving back into the dorms next weekend and then starting classes shortly after. That's what it probably is and when I get settled into school these tics will probably calm down a lot.

Blog Post From Last Night

Moving back into the dorm for my sophomore year of college next weekend. I'm excited to be living with my close friends for the first time but nervous to actually talk to my professors and classes about my Tourette's for the first time in college too. So of course between the excitement and the nerves my tics are really vamping up. Laying in bed right now trying to sleep but all my body feels like doing is spazzing out apparently. Need my weighted blanket a lot tonight! It's helping but never works 100%. I think I'm more excited than nervous and excitement seems to really get my tics going. Just wish I didn't have to deal with these darn self injurious tics like hitting my chest, arms, and stomach.....

Sunday, August 11, 2013

Moment #2: Amazing Nurses at Camp, an OCD moment

So when I was at camp twitch and shout, I wrote a list of "camp moments" on my phone so that I would remember stories from camp that I wanted to write out on my blog. I haven't written out a lot of these moments yet because I've been waiting until I felt like I wanted to write them out. For a while there writing these moments out would probably have made me cry because I missed camp so much! I still miss camp SO MUCH but I think now writing out these moments won't make me cry anymore but will make me remember the amazing times I had at camp. I am going to write another one out on this post.

Moment #2: Amazing Nurses at Camp, an OCD moment

This is another amazing camp moment that made me smile. As counselors, we weren't supposed to keep any medication in our cabin and this included Advil. I don't get headaches a lot, but I sometimes get stress headaches or I sometimes get headaches when I am doing a lot of head tics. So on about the second day I got a headache and went to the med lodge to get some Advil.

At the med lodge I told one of the nurses that I had a headache and asked for some Advil. My OCD right now is mainly focused on germs so I have a problem with anyone touching anything that I am going to eat or swallow. But before I had the chance to tell the nurse this, she touched my Advil and held it out for me to take. I of course didn't take it from her and explained to her about my OCD. I told her that because of my OCD I have a problem with people touching my medications. I expected her to give me a strange face or think I was crazy because that's what would happen in the real world if I were to tell someone about this. Instead, she gave me a warm smile, told me not to worry about it at all, understood what I was talking about pretty much 100%, and told me she was going to throw out the Advil that she had touched and get me new ones. I was so amazed by this.

She didn't even hesitate at all and didn't give me a strange look even for a second. Most of the nurses at camp have kids with Tourette's and OCD so they just understand so well. She poured me two more Advil into a cup without touching it and I thanked her of course and let her know how much I appreciated it! She then told me to remind her the next time I needed any meds to make sure she didn't touch it again.

The next time I saw the nurse and needed more Advil she remembered me and was great about it yet again! She even told me that after I told her about my OCD with the medicine she had been asking other campers if it was okay for her to touch their meds to make sure for the other campers and counselors as well. This made me so happy and made me appreciate where I was even more. What an amazing nurse and person! This kind of thing just doesn't happen in the real world :)

Moment #1: Service Dogs At Camp, A Tic Moment

So when I was at camp twitch and shout, I wrote a list of "camp moments" on my phone so that I would remember stories from camp that I wanted to write out on my blog. I haven't written out a lot of these moments yet because I've been waiting until I felt like I wanted to write them out. For a while there writing these moments out would probably have made me cry because I missed camp so much! I still miss camp SO MUCH but I think now writing out these moments won't make me cry anymore but will make me remember the amazing times I had at camp. I am just going to write out one on this blog post.

Moment #1: Service Dogs At Camp, A Tic Moment

So at camp there were a few service dogs. At counselor training we were told that there were going to be service dogs that a few of the kids were going to bring to help with their tics/Tourette's. I am a huge dog lover! We were told at counselor training though that we were not allowed to pet or touch the service dogs while they are working. This is completely understandable. I knew I would have to keep an extra distance from the dogs though since my one and only touching tic seems to be associated with dogs and other animals. I've always had this thing about NEEDING to touch dogs noses when i'm petting a dog and just in general needing to touch their fur if they are close to me. So I just knew I would need to keep an extra safe distance from the service dogs at camp and then I would be fine. I seemed to be doing a really good job with keeping my distance from them, even though it was hard because I love dogs so much!  But, the second to last day of camp I was talking with some campers and counselors and one of the girls with a service dog came up and started talking with us too and stood right next to me with her dog. I didn't want to move away as soon as she came to join the group because they would have probably seemed rude, but as she stood there I felt the tic building up in my arm. It just kept getting stronger and stronger pretty quickly and I knew I was going to have to do something soon about the situation. In any similar situation like this at home, I would have been forced to take myself out of the group. But I was at Tourette's camp! Why not explain myself I thought? So I spoke up and told her about my touching tic with dogs. I was planning on just telling her and then backing up from the group myself but she backed up with her dog first. As soon as she backed up and brought the dog out of arms reach, I relaxed my arm and let my tics go. So my arm jerked out in front of me about 6 or 7 times and then after my tic was done the girl said to me "Thanks so much for telling me about that. I really appreciate it!" She was so sweet about it and not mad or offended at all. She was just glad I told her and competently understood. That's a moment that only happens at camp twitch and shout :)

A note to anyone reading this from camp twitch and shout: No need to worry about this in the future with service dogs! I am always aware when I reach the point at which I just have to let the tic out and will always be able to either tell the person with the dog or step back from the dog. So there is no need to worry about putting a camper with a service dog in my cabin in the future if you need to because I will not interrupt the service dog from working! The tic does not happen every time I see a dog or am near a dog and when I do feel it coming I will be able to step back so that I don't end up touching the dog or interfere in any way with the dog's job.

A bit of an apology from my mom

Hey! I just wanted to let you guys know that my mom did apologize to me the other day about saying "people with tourette's should get their tics under control because they are socially inappropriate". She did not offer up the apology on her own but I brought it up and told her how much hearing her say that hurt my feelings. After a bit of a conversation, my mom admitted that she should have never said that to me. Makes me feel better at least to some extent to her her say she should have never said that.

Thursday, August 8, 2013

Wishing for A Cure Tonight. A Cure for Ignorance.

My mom made me mad again tonight. When she's not in the right state of mind all these awful things come out of her mouth. Is it that when she is dis-inhibited her real feelings and thoughts come out or is it that when she is dis-inhibited the pressures of the society she lives in that cares so much about "status" and the "norm" cannot be overcome in her mind? I really don't know. Just when I think I have actually made an impact on her and I have actually changed the way she thinks about Tourette's and differences in general she says something like this.....

Tonight she said to me in front of two of her good friends "these people with Tourette's need to get their tics under control because they are not socially acceptable". That makes me absolutely furious! Beyond dissapointed and ashamed that my own mother would say something so uneducated and ignorant! Beyond disappointed that the kind of person she is being right now is the reason my wonderful girls at camp that I feel so protective of have to work to overcome the feeling like they are "less", "different", or that it's not okay to be themselves.

I LOVED ALL OF THEM FOR EXACTLY WHO THEY ARE! I loved all of them because they are special, and wonderful young ladies who are going to change lives and make so many people care about them just by being exactly who they are. They have already changed my life, that's for sure. Their tics make no difference!

They are who they are and I NEVER want them to be ashamed of that and I NEVER want them to be ashamed of their tics or their ocd or their anxiety. I NEVER want anyone to ever tell them the kinds of things my mom tells me. I NEVER want them to hear those words because they are NOT TRUE and simply come from ignorance.

I don't want them to have to deal with unkind and untrue words, I don't want them to deal with the ignorance some people in our society still hold, and I just don't want them to have to deal with the part of society that still thinks you have to be "perfect" and "normal" to make a difference in this world and in people's lives and to have so many people who you love and who love you back.

I want every person in the world to understand what it is really like to have Tourette's. I want every person to understand what a person with Tourette's goes though when their brain is telling their body with so much power and might to do things that they really don't want to do. These things that are brain forces us to do can be physically painful, can be embarrassing, can be the exact opposite of what we want to do in a given situation and it doesn't matter, our brain is going to keep telling us to do it until there is no resisting any more. I want them to understand how hard it is to get to that point of acceptance of yourself and your tics and your differences and then to have someone you love push that down. Many people wish there was a cure for Tourette's. I too wish for this. But sometimes even more, I wish for a cure for ignorance.

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Tuesday, August 6, 2013

For Millie and Her Family :)

A new awareness picture I made for Millie and her family. I just love making these pictures and then seeing the comments and seeing the shares! I made this one this morning and already it has been shared 40 times and liked 68 times! I love seeing the awareness spreading! Never forget that Tourette's Syndrome awareness matters, especially for kids like Millie :) 


Operation "Get My Mom to Accept My Tourette's"

Well I haven't really written about this yet, partly because I have been very busy and partly because I didn't want to jinx it, but I think I am ready to write at least some of it out now.

As those of you who have been members of my Facebook page and blog for a while know, I wasn't diagnosed with Tourette's until I was 16. They thought of my tics as habits resulting from my anxiety and they thought that if they just told me to stop enough times then they could break these habits. I think what it comes down to is that in the 90's (which was when I first started exhibiting tics) even doctors really didn't know much about Tourette's and neither did the general public (which includes my parents). Since I was diagnosed with Sensory processing disorder and dysgraphia in 3rd grade, Generalized anxiety disorder in 4th or 5th grade, and OCD when I was 15, the tics were just lumped in as habits or fidgets resulting from my anxiety. No one really ever thought of the possibility of Tourette's because in my parents' minds, Tourette's was only something that caused people to shout out swear words. Of course they now know that only 10% of people with Tourette's have swearing tics and that in reality most people have tics like mine, but they just didn't know that before my diagnosis.




When I was diagnosed, the word Tourette's scared them. They had only heard of Tourette's in the context of people who shouted out swear words all the time and that definition of it by no means fit their daughter. Initially they just couldn't get that stereotype and they thought since they couldn't get over the stereotype, other people wouldn't be able to either. So in summary, they told me that telling others that I have Tourette's would close doors for me and that I should keep my diagnosis to myself. My parents also hoped that the neurologist was wrong and somehow had misdiagnosed me. They still hoped that very soon my tics would go away.




When it was clear my tics and other associated conditions were not going to go away my dad went on one mental path and my mom went on another. My dad I think moved away from the polar extreme of thinking the Tourette's diagnosis was going to ruin my life if anyone found out to a more neutral way of thinking. He began to accept that everyone has challenges and that this was just my challenge. He began to get over the stereotype of Tourette's and bring this new perception of what Tourette's is into his mind.  My dad and I don't talk a whole lot or really at all about Tourette's or my other associated conditions, but I we did have one good conversation about it a little while back where he told me these things and gave me an idea of where he was mentally in terms of accepting the fact that I do have Tourette's. My dad certainly reached this level of acceptance before my mom did.


Let's just say that my mom's path to acceptance was a whole lot more complicated. I could probably write a whole essay on my mom's path to acceptance which was mainly a long road of denial and guilt. Instead though I am going to give you guys a summary. Basically, when it was clear that my tics and other associated conditions were not going to go away, my mom went into pretty strong denial. She didn't want her daughter to have anything wrong with her. She also felt a lot of guilt because if in fact I did have Tourette's (which I do) and had tics as a kid (which I did, a lot!) then she had in reality all this time been telling me to stop doing something and in essence criticized and punished me for that I couldn't control and wasn't my fault. It was easier for her to deny the fact that I have Tourette's all together than to face her guilt. I understand why she was in denial about my Tourette's, but that doesn't necessarily make it right. Before camp though I kind of came to a realization that my mom would never fully accept the fact that I have Tourette's, would never spend the time she needed to to really understand it, and would never be able to put herself in my shoes even for just a few seconds.



When I came back from camp I still kind of thought there would be no way that she would ever accept my Tourette's or my involvement with the camp and the TSA i'm a part of. After camp though, I decided that even if she had a hard time accepting my TS, I wasn't going to be afraid to talk about it anymore around her or anyone else really. I wasn't going to be ashamed of the fact I have Tourette's because it's really nothing you should be ashamed or embarrassed of. I already knew this before camp, but knowing something intellectually is very different from feeling something inside yourself and believing it. I now feel and believe inside myself that Tourette's is nothing you should be ashamed of or shy away from talking about.


So when I came home, I didn't shy away from talking about camp or Tourette's with my friends or even my family. I talked about camp and my experiences there from my heart without hesitation. My new confidence about it I think is one of the things that helped my mom start to come away from her state of denial. I can safely say that at least for now, my mom is no longer in denial, is no longer afraid to talk with me about Tourette's, and is no longer hesitant about me being involved with camp twitch and shout and the TSA group. You guys have no idea how huge this is for her! Or maybe you do know, especially those of you who have gone though something similar with a parent, retaliative, or friend.

I have been able to talk with my mom about camp, about the TSA group and my new leadership position with the group (the teen/young adult group I have been put in charge of), and about Tourette's in general. Before, almost every time I tried to talk with her about Tourette's she would get angry, go into a spinning denial, and we would both leave the conversation upset and more often than not, in tears. So for a while of course I just gave up on talking with her about anything related to Tourette's or OCD. Now however, she is in a much better place about it. I think a few things helped her:
1.) That going to camp made me so happy and helped me to step out of my comfort zone and try things I have never had the confidence to do before
2.) The fact that camp exists and the fact that there were so many campers and counselors there with Tourette's. I think this helped her realize that Tourette's is definitely a real thing that real people in real life deal with and it's not just me.
3.) The fact that some people at camp have a very mild case and some people at camp have a more severe case. Hearing about the spectrum of tics helped her I think start to realize and take to heart the fact that that not everyone with TS has a severe case and just because I have Tourette's doesn't mean that everyone will always think I have a severe case or cursing tics. This has been a major fear of hers.
4.) My own new found confidence or talking about it and about explaining it!






The real test for her was when I showed her a new shirt that I got at camp. On the front it says "different is the new normal" and on the back it says "tourette's tics me off" or maybe on the back it says "tourette's Syndrome awareness". I can't really remember though! Anyway it says tourette's on the back and that's what matters for this story right now. So the shirt came in the mail because they didn't have any smalls left at camp. When it came in the mail I took the shirt out and I showed it to my mom with confidence. I showed her the front and the back and asked her what she thought about it. And drum roll please......she said she loved it!! I guarantee you before camp she would have said something like "it's cute, but you better not wear that in public because it says tourette's on it". Then I even decided the next day to wear it out and about and my mom didn't say a word. I know she knew I was wearing it but she made no objection to me wearing the shirt out and about in public. Now that is the kind of progress I have been waiting to see in her for a very very long time now. Operation "get mom to accept my Tourette's" = complete!





Now she's not perfect, and I wouldn't expect her to be because you really can't move from straight denial to perfect acceptance and support in one week, but where she is right now is good enough for me! If she stays where she is right now mentally about the whole thing I would be perfectly happy with that!

Saturday, August 3, 2013

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Videos of Camp Twitch and Shout 2013

A video/ slideshow of camp twitch and shout 2013! The video cannot explain just how camp changes you and the campers, but it is an excellent video and comes as close to that as a video can come! Hopefully there will be more videos produced this year from camp twitch and shout 2013 :) http://www.youtube.com/watch?v=L4IUmO9V4GE


Here is also a video of closing ceremonies which is the closing of camp before everyone has to leave :(  http://www.youtube.com/watch?v=ozD5H569xzo


Thursday, August 1, 2013

Counselor Photo's of Camp Twitch and Shout 2013

Counselor Photo's of Camp Twitch and Shout 2013 !!!!




























Go to Camp Twitch and Shout next year! DO IT!

Hey everyone! You all should come be campers or counselors (depending on your age) at camp twitch and shout next year or in the future! If you are 18 or under you are a camper and if you are 19 or over you are a counselor! Camp was amazing and I have come away more confident, more self assured, and just so comfortable with who I am, tics and all. Like really, camp changed my life. I am serious. You really just have to go and experience it yourself fully to know what I mean. I loved watching my campers grow and step out of their comfort zone throughout the week and I loved being able to do that myself as well! I feel like I have this whole new family of people who care about me and will support me no matter what! I no longer feel alone or like I am the only one dealing with this. I feel like I am a part of this amazing community of amazing and inspiring people just like me! I strongly encourage you all to look into camp for next year or for the future. It will change your life no matter how old you are, no matter if you are a counselor or a camper, and no matter how mild or severe your tics or associated conditions are. Here is the website for you guys to check out: http://camptwitchandshout.org/ 

Even if you are hesitant about it or nervous, please check it out and consider it! I was way nervous at first but all my nerves went away completely as soon as I got to camp. I didn't even know that I could ever feel as comfortable, as confident, and as okay with being myself as I was at camp. I had no idea that kind of comfort was even possible for me. I had no idea that I would feel like I had known the other counselors and campers my whole like after just a day or two. I never warm up that fast to anyone. You just have this amazing connection there to everyone else immediately and you just have to experience yourself before you can fully understand how good it feels. 

Also, you don't have to have Tourette's to be a counselor there! You don't even have to know someone with Tourette's to be a counselor there! The counselors without Tourette's get just as much out of camp as the counselors who do have Tourette's! 

If you have any personal questions for me about camp, feel free to contact me at jspershing93@gmail.com or at facebook though my facebbok page for tourettes: https://www.facebook.com/pages/A-Little-Bit-Different-Tourettes-Syndrome/164459540340080?ref=hl

Camp is over, but it’s never REALLY over!

Camp is one heck of an amazing place! I miss it so much already! I’m still speaking about camp in the present tense when I tell people camp stories right now. I refuse to speak about it like it is over. I am in denial that we are back in the real world. I cried quite a bit again now that I am home and realizing that camp is really over.
My awesome co-counselor, Becca, helped me calm down, though, and I have stopped crying for now, but know I will cry at least one more time in the next few days or maybe many more times. I just want to go back to camp or want all my camp friends to come live with me. Love you all, and of course I miss my amazing campers, too.
I just have to try to keep in mind what one of my campers said, that camp lasts all year because your memories of camp and the support from the people at camp who now care about you so much and will be there for you when you need them is always with you no matter where you are physically.
These girls are all so mature for their age. Many of them have to be to get though all they have gone through. Most of the time, the amazing words that come out of their mouths both surprise me deeply and touch me. This is what will get me though the year until camp again next summer. Hope this post makes some since even though I am super tired and teary-eyed right now . Just had to say this.