1 day till camp twitch and shout!

Okay I think you guys are probably getting as tired of this countdown as I am! I'm getting tried of counting down because I want to leave for camp twitch and shout RIGHT NOW! Lol, i'm getting rather impatient. Good thing camp is only 1 day away!!! 

Last night I woke up at 3:50 couldn't go back to sleep until 6ish. Then I acctually got in a few hours of sleep after that though. Well at least I won't have trouble waking up at 5:30 to go to the airport on Saturday! 

I pretty much finished up packing today too! One of my luggage is already all zipped up and closed which is super exciting! And all the needs to go in the second one before I close that one is a blanket for night time since I've heard it gets cold in the cabins at night and a non-fitted sheet. I might put a few little costume items in there too! Besides that all I need to do is wash out my water bottle and pack that, get my sack lunch to eat before counselor training on Saturday, put my hair brush, medicine, iphone charger, and cooling pillow pad in my backpack, and that's it, I'll be ready to go! 

After I got all packed up, I decided to watch some camp twitch and shout videos on facebook that I hadn't seen before and it made me get SUPER DUPER excited for Saturday! 1 more day!!! So I got so excited that I couldn't contain myself any longer! I stood up and started doing my jumping tic combined with my various lovely puppy dog sounding vocal tics. Lol, my dog decided she wanted to join in on the action and kept jumping up on me! She wouldn't leave me alone until I calmed down again enough to sit back down. Now that i've stopped ticcing so much for the moment, I seem to be much less interesting to her than her stuffed toy which she decided to run upstairs with and chew on in my mom's bed  Silly Brandy!

Tomorrow my friend is coming over to keep my busy for the day! We'll have lunch together and hang out. My tics are significantly more active right now because I am so excited and luckily my friend who is coming over is very used to my tics so it won't be a problem. I just hope I will be able to stay calm on the airplane flight to Atlanta so that whoever i'm sitting next to doesn't freak out on me. I probably will try to fall asleep as soon as I get on the plane so that hopefully I can sleep through the plane flight and won't have any troubles! I've never had any huge problems on planes before so I think I will be okay. I don't really feel like explaining Tourette's to the random stranger who will be sitting next to me so fingers crossed I fall asleep quickly. Then when I wake up I will be in Atlanta and will get off the flight and there will be someone there waiting for me to take me counselor training! Then I get to meet my awesome co-counselors and meet lots of other people with Tourette's and those without Tourette's too who are awesome too and are volunteering their time to make these kids' week amazing! Out of my 4 co-counselors, 3 of us have Tourette's so that's pretty awesome! Our other co-counselor doesn't have tourette's hasn't ever met someone with Tourette's before and I think a lot of other new counselors this year also haven't ever met anyone else with Tourette's before so this will be a new and interesting experience for them! Ah I'm just sooooo excited to meet everyone and be at camp and have this amazing experience! 

3 days until camp twitch and shout!

My anxiety about camp twitch and shout seems to be up and down. Yesterday and the day before I was anxious about camp and today I am just excited and want to be there NOW! Hopefully my anxiety will stay down and I will just continue to remain very excited. I just have to keep in mind to stay in the moment and not worry about the "what if's" that always seem to pop into my mind about just about everything! I think packing helped because I feel more ready to go and more organized! 3 more days! And Friday my friend will be coming over so that will help me stay busy! We'll go out to lunch and do some shopping. Then I will have dinner with my grandpa. Staying busy seems to help keep my mind occupied and off of any worries and/or anxiety.

I also found my camera which I was worried I was not going to find! I was so glad when I found it and then I spent a bit clearing the chip so that I have enough room to take pictures and video of camp on it. I also packed two back up camera chips just in case. 

6 days until camp twitch and shout!

6 days until I leave for camp twitch and shout! I'm so excited, but my anxiety seems to be kicking up as well. I thought that because I am just so darn excited that maybe I wouldn't have much anxiety, but I should know myself better than that at this point! Any trip, vacation, or camping experience, no matter how excited I am causes my anxiety to make its presence known. My heightened anxiety then by default makes my OCD and tics worse. It helps so much to know that mostly everyone at camp, even most of the counselors, know exactly what this is like. That fact alone is helping me feel less anxious. I have never really been in an environment before where mostly around me knows what it's like to have this kind of bad anxiety which makes your OCD and tics act up even more than usual.

I am trying my best to just ignore my anxiety though. The advantage of knowing what anxiety is and how it works is that you know it's normal for you and you can say to yourself "this is just my anxiety acting up" and then try to get on with the day! Easier said than done of course and i'm still working on trying to master this, but the more I try to recognize my anxiety as simply a false alarm the better.

So i'm trying right now to ignore my anxiety and just focus on the great time I am going to have at camp and how much fun i'm having getting ready for camp! I've been doing a lot of preparation for camp which is of course lots of fun! Camp shopping is awesome and I have almost checked off everything on shopping list for camp except for a few things. I will do more shopping this week. I need to get more of my OCD medicine, call the gastroenterologist to get some emergency stomach relaxant medication just in case my anxiety acts up and makes me stomach upset, and I need to get a one piece swim suit, a shower bucket, some shower shoes, and possibly a few more fun costume items like cat ears and a witch hat!

Also the theme this year at camp is Disney. Every year they pick a different theme! So to go with the camp 2013 Disney theme, my co-counselors are I decided to make our cabin theme Alice in Wonderland. We came up with a bunch of great decoration ideas and I started working on some decorations for our cabin yesterday. So far they are looking pretty good! Basically they are plates I designed with silhouettes of different Alice in Wonderland themed characters on them! My plan right now is to make these into welcome name plates. So we will put a campers name on each of them and then put them up in the cabin either in the entry way or on the campers bunks. It takes a lot of patience, careful cutting out of the silhouettes, and lots of taping to make these but I love seeing the end product when I finish a plate and hopefully my campers will appreciate them. The picture is of the three that I made yesterday. My two newest ones that I made today are of the Alice in Wonderland caterpillar and the red queen.

The Latest at the Tourette's Syndrome Research Lab

Today I had a meeting with my mentors in the Tourette's Syndrome Neuroimaging research lab that I work in as a student. They are giving me my own research project, or as they call it my "baby". I am pretty much going to run it on my own and then go to my mentors when I have questions or need any help, but this is basically going to be my project. I am honored that they trust me enough and think I am capable enough to handle this big responsibility! I am also of course a bit nervous as well, but I know I can do this! It's a study about tourette's syndrome and the co-occurring hypersensitivity to stimuli, otherwise known as sensory processing disorder. I'm not going to say much more about it other than that because of privacy issues of the lab, but I can tell you that it's a pretty neat experiment and i'm excited to start working on it!

Also while I was in the meeting I told my mentors that I was going to be out of the lab to go to camp twitch and shout to be a counselor. They were so excited about this! They told me that they thought it was great that I was going to be a counselor and one of my mentors said "the kids there will love you! they're all going to want to be just like you when they grow up!" It was so nice of him to say this to me and it made me feel really good. I'm so glad to have such wonderful and supportive mentors who of course know all about Tourette's because that's what they specialize in studying :)

1 week, 4 days until Camp Twitch and Shout!

1 week and 4 days until I am off to Atlanta, Georgia to be a counselor for the first time at camp twitch and shout! I am beyond excited! For those of you who are going to be at camp this year, I will see you there and I can't wait to meet you!!! I have been waiting for this ALL YEAR, well really more like for quite a few years, and I can't believe I will be their in 1 week and 4 days. It is really so surreal to me.

If anyone else on here is curious about camp twitch and shout, it is a aone-week summer camp for children ages 7-16 diagnosed with Tourette Syndrome held in Atlanta, Georgia every summer! Also you can be a counselor starting at 19! Registration is closed for this summer, but for those of you who are interested in it for the future you can check out the website here:http://camptwitchandshout.org/.

So anyway, I've been counting down since may really but now the real countdown has begun!!! I've planned all my outfits for the theme days, i've started to gather the things I need for camp on my list, and I'm still fighting off the urge to pack up right now! I'll probably start packing next week but its soooo tempting to pack NOW because I am just that excited! I also have found out who my co-counselors are going to be which was super exciting and we have been messaging each other on facebook about camp! They seem so awesome and I can't wait to meet them in person! We have been introducing ourselves to each other, talking about how excited we are all for camp, and have been planning our cabin theme (which I won't release yet because it's supposed to be a surprise I think!). 

So in the mean time today to try to hold myself off from packing, i'm just going to gather as many videos about camp twitch and shout as I can find and put them under this post! The videos will give you an idea of how awesome camp twitch and shout is for those of you who have not been before and it will help me get even more pumped up! 

Camp twitch and shout 2012: 

Camp twitch and shout 2011: 

Camp twitch and shout 2010: 

Camp twitch and shout 2009: 

Home video of Lots of Hand Licking and Tongue Hitting Tics At 4 years old

For those of you who skipped over the dance home video because it was just too long or for those who would just like to see a shorter version focusing on just tics, I have condensed it for you to just show the main tic that I was doing in this video which is the hand licking tic and the hitting my tongue with my hand tic. This video was taken when I was around 4 years old by my mother in order , as you will hear my mother saying in the video, to show my father that there is definitely something different about me. 

Odd hand posturing, biting fingers, and sensory processing disorder at 5 years old

Another home video! This was the video of my kindergarten play! I think I was about 5 in the video. In the beginning of the video, you will notice that I have some strange arm hand posturing. I am holding my arms and hands curled up against my body in a stiff position. I am not sure exactly why I was doing this. Sensory processing disorder? Anxiety? Trying to hold back tics? Any ideas about that one?

Also throughout the video I have my hands up at my mouth and am biting my hands and fingers. This is a complex motor tic.

At the end of the video you also see my sensory processing disorder come into play. I did not like the clapping because of auditory processing sensitivity with is a part of sensory processing disorder so you can see that I put my hands up against my ears to cover them

Home Video of Tics and SPD In Dance class at 4 years old

Hey everyone. So I just got some old home videos converted into DVD's so that I could watch them. This is a part of one of the home videos that my mom filmed when I was around 3 years old. Please read this post before you watch the video! So my main purpose in sharing this video of myself as a young child is for learning purposes. For parents, teachers, and anyone else who has a young child with TS in their life recognizing tics in a very young child that are more complex along side behavioral issues and associated conditions can be sometimes very difficult and confusing.

This is a video of me when I was about 3 years old, when my tics and associated conditions started to become evident to those around me. It is a fairly long video, but I promise if you stick with it you will learn a lot! My mom filmed a video of me in dance class so that she could show my dad what I was like in dance class compared to the other children. Near the end of the video, you can hear my mom saying in the background, "with her, it just kind of depends, there's no reimer reason" and "Wait until my husband sees this. At least he'll finally get the idea about what I mean by there's something different about her. She just doesn't conform with the other girls." So while my mom recognized at the time that there was something that was different about me, she did not know how to identify what it was that made me different.

My tics were complex so they were not as easily identifiable as blinking tics or head movements. My behavioral issues were also complex. While I was a bright child and was very verbal, in group situations or in situations with a lot of sensory stimuli, I would get overstimulated and I tended to "check out" and go off into my own world of ticcing, staring off into space, and not participating in the activity that was going on around me.

So now I am going to go step by step though the video to give an explination of the different things you see me doing in the video. For this part, I suggest that you read this text side by side while watching parts of the video. I suggest that you read the text that goes with each the part of the video either before, after, or while watching the video depending on your own personal preference.

Start of video: At the start of the video I am participating in the activity and doing what the teacher is telling the class to do! At this point I was probably not too overstimulated by sensory input quite yet.

Around 20 seconds: At around 20 seconds you can see the first facial tic in the video. Facial tics that are smaller can be hard to see and can be easy to write off to things like a child having something in their eye or getting their hair in their face. However for me this was a common facial tic that I had in my childhood. I would do this at many different points during the day and continued to make a similar facial expression for no apparent reason for at least three years. In the video, you can see a complex facial tic. It is complex because I am doing multiple things with my body all at the same time. In the video at 20 seconds you can see that I pull my lips up to show my teeth, pull my mouth to the side, squint my eyes, and swipe my hands across my face. It all happens very quickly though which is why it can be hard to recognize!

45 seconds: At 45 seconds you can see another, yet different, series of tics. First I stick my tongue out quickly (which is kind of hard to see because the camera is shaking a bit, but you will see that one many times later in the video!) and then I quickly pull my mouth to the right side side with my mouth closed and then to the left side while bringing my hand up to swipe it across my face. This is considered a complex motor tic. At this point though I am still participating in the class!

1 minute, 7 seconds: I bring my hands up to my face and start pulling at my cheeks with my hands. This is a complex motor tic.

1 min 14 seconds: My hands move to my lips and then about a second later I start to lick my hands repetitively. And YES licking your hands repetitively is a tic! It is a complex motor tic. I lick my hands for a little bit repeatedly at this part and then I move my hands down to my lips to do a different tic which is a lip pinching tic. This is a complex motor tic.


1 min 33 sec- 1 min 45 sec: my mom started filming my brother who was a baby at the time! You can skip this part if you want! But he was a pretty cute baby :)

1 min 46 sec: I am still participating in the dance but my hands remain up at my mouth doing various tics. Some of the tics that you can see here are mouth pinching tics and tics where I put pressure on my mouth, lips, tongue, and teeth.

2 min 1 sec: You get a pretty good view of yet another complex motor tic. With this tic, I am licking my hand but I am also kind poking my tongue into my hand. I do it two times before I turn away from the camera, but I assume that I did it a few more times while my back is turned from the camera. Still participating in the dance at this point.

2 min 23 sec though 2 min 40 seconds: my mom starts filming my brother yet again. You can skip this part!

2 min 58 sec: For some reason I drop to the ground on my knees at this point and then get right back up. I also am sticking my tongue out and wiggling it from side to side when I do this. The wiggling and sticking out of my tongue is a complex motor tic. I am not however 100% sure what the whole dropping to the floor thing is about. Maybe its just a normal 3 year old thing? Not really sure though. Let me know if you have an idea about what this is!

3 min 4 sec: I stop participating in the dance class. The rest of the girls are singing the song while I stand there staring into space. At this point I think I just got too overstimulated to participate. This is a part of sensory processing disorder (SPD). When kids with SPD get overstimulated and have too much sensory input going on around them (in this case the kids are singing loudly and I have been in a dance class with the a group of girls all doing different things around me for a little bit now) the kids can sometimes "check out"/ go into their own world.

3 min 9 sec: Simple motor tic. I pull my the corners of my lips up (which looks like a quick smile) first on my left side then on my right side.

3 min 13 sec: complex motor tic. I bring my hands up to my mouth again and start pulling on my cheeks and pulling at my fingers around my mouth. At this point I also start stepping out of the line, not paying attention to the fact that I am supposed to be staying in line with the rest of the girls and singing the song. This may also be ADHD/ADD but I am not 100% sure.


3 min 35 seconds: someone off camera says "can you get in line?" to me and completely ignore them as if I had not even heard what she said. My best guess is that this is because I am too overstimulated sensory wise because of my SPD and I have checked out from all sensory input, including auditory stimuli.

3 min 40 seconds: you can see that I am still standing out of line. I am doing the hand licking complex motor tic again and walking aimlessly. I continue to lick my fingers, poke my tongue into my hand, and walk aimlessly out of the line. The teacher says off camera to me"can you follow the girls for me?" and yet again I completely ignore her and continue to lick my hands.

4 min 44 sec: I am still not participating in the dance class. I am facing away from the girls who are participating and am doing my lip pinching tic which is a complex motor tic.

4 min 47 sec: I am semi-participating again. I have gone to put on a tu tu skirt with the rest of the girls. I proceed to put it on! I loved dressing up!

5 min 25 sec: I am back to participating with the group dance lesson with the other girls. I am walking with the other girls but I am not doing the different moves like the other girls are doing like turning around and putting my arms up. Walking aimlessly in a circle seems like something I am prepared to do at this point.

5 min 58 sec: My hands are back up at my mouth and again I am doing the hand licking tic. At 6 min, I push my hand repetitively into my tongue and then continue to lick my hand. This is a series of complex tics. Throughout this though I seem to be trying to participate in the class, but I am still distracted by my tics and the sensory input so I am not participating fully. I keep my hands up at my mouth.

6 min 24 sec: Another hand licking tic and then I move on to licking some of my fingers individually which is also a complex tic.

6 min 29 sec: More hand licking tics and pushing my hand against my tongue repetitively and quickly. Then I move on to a lip pinching tic.

6 min 39 sec: I put my hand into a fist and am now pushing my fist into my tongue. This is also another variation of the previous tic. This is a complex motor tic. I do this quite a few times and keep my hands up at my mouth. I also start wiping my mouth with my hands and arms. This is also a complex tic.

7 min 01 sec: I open my mouth, stick my tongue out, and grab my tongue with my fingers and pinch/squeeze my tongue repetitively. This is a complex tic. I am still trying to participate in the dance lesson but am highly distracted by my tics and the sensory input.

7 min 10 seconds: More hand licking tics.

7 min 24 seconds: I start specifically running my thumb against my tongue. This is a variation of the hand licking tics, and is also a complex motor tic. While I am doing this I am to distracted by the tic to participate in the dance so I am just standing.

7 min 41 seconds: Small simple facial tic. I pull the left corner of my lip up and squint a bit.

7 min 58 sec: I am participating with the class but am sticking my tongue out and wiggling it from side to side. This is a complex motor tic. This is also the part where you hear my mom say in the background "with her, it just kind of depends, there's no reimer reason".

8 min 17 sec: I am no longer participating with the group. I am now doing a hand licking tic again and start doing the tic where I hit my hands against my tongue. You can see it close up with the part of the video. I do start singing with the rest of the girls after I am done with that series of tics though but I am behind the rest of the girls and not in line.

8 min 36 sec: I stop singing and do a simple facial tic where I pull the right corner of my lip upwards and squint. I then start singing after that again though.

8 min 54 sec: I put my hands back up to my mouth and do the licking tic. Then I turn around to face the wall away from the teacher . The teacher then tells me to turn back around and I pay attention to her this time and turn back around briefly but then quickly turn back to face the wall and just stand there. Sensory overstimulation!

9 min 26 sec: I am still turned around towards the wall standing and not participating. This is when you can here that my mom says in the background, "Wait until my husband sees this. At least he'll finally get the idea about what I mean by there's something different about her. She just doesn't conform with the other girls."

9 min 33 sec: I drop to the floor on my knees again. I'm still not sure if this is a tic or if it is normal behavior or if it is something else? After that I walk aimlessly around with my hands on and off my mouth.

9 min 48 sec: I start singing again with the group and then while singing put my hands back up to my mouth

10 min 2 sec: I put my hands up to my lips and put pressure on my lips with my fingers. This is a complex motor tic. The girl next to me tries to grab my hand for the bow but I cant take my hands off my lips to do this. I do a little bow white my hands are still on my lips.

Well that's the video! I hope this helped you to identify some different types of tics and behaviors associated with tourette's like sensory processing disorder and maybe some ADD/ADHD thrown in there as well. If you have any questions, comments, or anything else feel free to comment below or message me! I will also add some other videos of my tics and sensory processing disorder related behavior to the page probably later on tonight or tomorrow.

Also my question for you as parents, teachers, or anyone else is if this was your child, if your child was doing these kinds of repetitive movements and was not able to participate like the other children at this age what would you have done? Although my mom was filming this video for the purposes of showing my dad how I was "different" than the other kids in dance class, she didn't really go any farther than showing the video to my dad. I am not sure what my dad's reaction was at the time when he saw the video, but I do know I was never taken to a doctor or a psychologist of any kind by my parents to talk about these issues. My parents seemed to be under the impression that their parenting had somehow gone wrong and that they just needed to break my "habits" and make me learn how to pay attention more and then I wouldn't be different any more. So the issue was never looked into. I did not grow out of it. My tics continued to get worse and my parents continued to try to stop me from ticcing be telling me simply to stop.

I might think that after a while of trying to get me to stop by telling me to stop not seeming to have any effect or be working at all that my parents might have looked into other options like maybe taking me to see someone and getting advice from a professional but that just never happened when I was a child.

As many of you on this page know, I was diagnosed with sensory processing issues when I was in 3rd grade by an Occupational Therapist I was seeing to try to improve my handwriting, was diagnosed with generalized anxiety disorder in around 5th grade, was diagnosed with obsessive compulsive disorder, dysgraphia (disorder of handwriting), discalula (disorder of math calculation) in 10th grade, and was finally diagnosed with Tourette's Syndrome when I was 16 and in 11 grade when I forced my parents to take me to a neurologist because I needed to know what my tics really were for myself.

Even after my diagnosis of Tourette's my parents did not believe I was given the correct diagnosis. They still believed I could just stop my "habits" if I really tried hard enough even though they had the proof of the past about 13 years saying otherwise. So my question for you is seeing these kinds of symptoms at such an early age and then seeing the progression of these symptoms what would you have done? 

Home Video of Lip Pursing Tic At 4 years old

Hey everyone. So as I have said in the previous posts with videos like this, I just got some old home videos converted into DVD's so that I could watch them. This is a part of one of the home videos that my mom filmed when I was around 4 years old. In this video, you can see that I am doing a simple motor tic which is a facial tic. I purse my lips and hold them out. As I said before in the previous posts, it's pretty strange seeing a four year old me ticcing! After I was diganosed with Tourette's, looking back I knew that I had tics all along but since I don't have a very good memory of when I was four I didn’t know that I had quite so many and such obvious tics at this age. This is just one of many tics I have seen in the videos of myself around this age.


It also amazes me looking back on these videos that my parents really thought I just had bad habits that they needed to force me to break and never took me to a doctor or psychologist as a kid. I know my mom recognized I was doing something out of the ordinary because once she realizes what I am doing she quickly turns off the camera and the video switches to another video. Even though she recognized I was doing something out of the ordinary, she just thought that she could make me stop ticcing by telling me to stop and by breaking my "habits". I kept ticcing throughout my childhood though and still of course tic today a lot regardless of my parents telling me to stop ticcing. Telling a child to stop ticcing does not help! It only makes things worse for the child! Tourette's Syndrome is a neurological disorder and cannot be stopped by pure will. 

Home Video of Echolalia at 4 years old

Hey everyone. So I just got some old home videos converted into DVD's so that I could watch them. This is a part of one of the home videos that my mom filmed when I was around 4 years old. The video starts at around 4 seconds. This is a video of my echolalia as a kid. In this video I started telling my mom to look at something in the book was looking at and then just kept repeating the word "look" over and over again which is a kind of vocal tic called echolalia where you repeat a word or phrase that either you have said or that another person has said.

As a said before in the previous post It always amazes me to see a little three or four year old me ticcing! It also amazes me looking back on these videos that my parents really thought I just had bad habits that they needed to force me to break and never took me to a doctor or psychologist as a kid. I kept ticcing throughout my childhood though and still of course tic today a lot regardless of my parents telling me to stop ticcing. Telling a child to stop ticcing does not help! It only makes things worse for the child! Tourette's Syndrome is a neurological disorder and cannot be stopped by pure will.

I know my mom recognized I was doing something out of the ordinary because once she realizes what I am doing she quickly turns off the camera and the video switches to a video of my brother as a baby. I had echolalia throughout my childhood where I would repeat my own words and the words or phrases of others and still have it today although it doesn't happen as frequently now as it used to when I was younger.

Home video of Motor Tic at 4 Years Old

Hey everyone. So I just got some old home videos converted into DVD's so that I could watch them. This is a part of one of the home videos that my mom filmed when I was around 4 years old.The video doesnt actually start until around 13 seconds so jump to that part! I got frustrated with trying to open a birthday present and then pass the box onto my dad to get him to try to open it. After I pass the box to him I do a motor tic which involves holding my eyes open wide, tilting my head and body to the side, and movement of my hands/arms. It always amazes me to see a little three or four year old me ticcing! I will be uploading more videos of my tics as a young child to this page so be on the lookout for them! Feel free to comment :)