TS Awareness Month Project Filming Instructions

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

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

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

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

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

State your name, age and that you have Tourette Syndrome

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

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

What are some bad things about having TS?

What are some good things about having TS?

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

Do you ever get bullied because of your TS?

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

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

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

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

How do other people react to your tics?

What is it like for you to tic in public?

What is it like for you to tic in school?

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

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

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

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

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

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

How do other people react to your tics?

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

Also if you are a girl, answer these questions: 

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

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

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

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

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

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

What are some of your tics?

Do you have any tics that hurt you? 

What does a tic feel like to you?

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

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

  How do your associated conditions affect you?

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

Have you had any negative reactions? What were they? 

How do you deal with negative reactions?

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

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

What is the hardest part of having Tourette’s?

 What is the best part? 

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

What is your profession/job now?

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

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

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

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

Anything else you want to say about having TS?

Also if you are a girl, answer these questions: 

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

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

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

OCD is Exhausting....

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

Tourette Syndrome and Positivity- Rowena's Story

A video in a series of guest blog posts about Tourette Syndrome and Positivity. Check out Rowena's Story, a story of how Tourette Syndrome ultimately changed Rowena's life for the better.


https://www.youtube.com/watch?v=5oHeWE7uWNE

Special Needs/ Disabilities/Mental Illness Documentaries List

Tourette Syndrome- 

I Have Tourette's, but Tourette's Doesn't Have Me: 

Recommended Age: Any Age! 

Topic: Tourette Syndrome, OCD 

My Rating: 8 

Link to Website: http://www.hbofamily.com/programs/i-have-tourettes.html

Summary: 

Autism- 


Loving Lamp Posts: 



Recommended Age: Any age!
Topic: Autism
My Rating: 9
Link to the Website: http://lovinglamppostsmovie.com/index.html
Summary: After his son's diagnosis, filmmaker Todd Drezner visits the front lines of the autism wars. We meet the "recovery movement," which views autism as a tragic epidemic brought on by environmental toxins. Operating outside the boundaries of mainstream medicine, these parents, doctors, and therapists search for unconventional treatments that can "reverse" autism and restore their children to normal lives.

We meet the 'neurodiversity' movement, which argues that autism should be accepted and autistic

 people supported. This group argues that the focus on treatments and cures causes the wider society to 

view autistic people as damaged and sick. Acceptance is the better way, but how do you practice 
acceptanceof autism in a world where the very word can terrify parents?And we meet a too often
ignored group: autistic adults. It's these adults who show just how tricky it is to judge an autistic 
person's life. Is an autistic woman who directs academic research about autism recovered? 
What if the same woman has trouble speaking and uses text-to-speech software to communicate? 
Is an autistic man who lives in his own apartment recovered? What if his mother must hire people to 
do his laundry and take him out in the evenings?

This wide angle view of autism makes clear what's at stake in the autism wars. Will we live in a world 

dominated by autism conferences where vendors hawk vitamins and hyperbaric chambers to parents 

desperate for a cure? Or will we provide the support that autistic adults need to lead the best lives they
can? And can these two worlds possibly co-exist?

Autistic-Like: Graham's Story: 

Recommended Age: Any Age! 

Topic: Autism, Sensory Processing Disorder 

My Rating: 9 

Link to website: http://www.autisticlike.com/

Summary: an intimate family portrait showing one dad's determined quest to find the right therapies, 

the right doctors, and even the right words to describe his son. This short subject documentary is a 

startling report from the edge of the autism epidemic, and illuminates the medical, social and public 
health issues faced by families whose autistic-like children have no clear diagnosis, and are offered 
no specific treatment.

A Mother's Courage: Talking Back to Autism: 

Recommended Age: Any Age! 

Topic: Autism 

My Rating: 7 

Link to Website: http://www.amotherscourage.org/

Summary: A Mother’s Courage: Talking Back to Autism (a.k.a The Sunshine Boy), a documentary by

Fridrik Thor Fridriksson, tells the story of Margret, a mother who has done everything in her power to
help her son. Keli is eleven years old and is severely autistic - his mother doesn‘t even know if he 
understands Icelandic, let alone other languages. Even if Margret holds no unrealistic expectations on 
behalf of Keli, she has the quenchless thirst for knowledge about the mysterious and complex condition
that autism undeniably is. Along they way, Margret meets other families and hears their unique stories 
about how they too have been touched by autism.

Bipolar Disorder- 

Boy Interrupted:



Recommended Age: 18 + 
Topic: Bipolar Disorder and Suicide 
My Rating: 8 
Link to website: http://www.hbo.com/documentaries/boy-interrupted#/
Summary: HBO Documentary, Boy Interrupted looks at the life of Evan Perry a 15-year-old boy from New York who committed suicide in 2005. The film made by his parents Dana and Hart examines how Evan's bipolar disorder and depression affected his life and the life of his family. Evan Perry came from a family with a history of mental illness; his uncle had committed suicide age 21. Evan had been diagnosed with depression and prescribed Prozac, then rediagnosed with bipolar depression and prescribed mood stabilizers, and later received milieu therapy, which brought relief for a time.However, aged 15, he jumped to his death from his family's apartment window.

The Medicated Child: 



Recommended Age: Any age
Topic: Medication, Bipolar Disorder
My Rating: 7
Website: http://www.pbs.org/wgbh/pages/frontline/medicatedchild/
Summary: This fascinating program from PBS's "Frontline" series explores the realities and controversies surrounding the increasingly frequent prescription of behavior-modifying medication for children as young as 2 years old. Numerous experts, including psychiatrists, government regulators and scientific researchers, discuss both the dangers and the benefits of the various drugs being used to treat children with behavioral problems and mental illnesses.

Tourette Syndrome Tic Resource Video

Thank you to everyone who submitted videos and contributed to this project! The video below is a Tourette Syndrome tic resource video to help parents, educators, physicians, and the general public to learn more about the wide variety of tics. Almost anything can be a tic. Tics can be highly noticeable or not noticeable at all. They can be loud or quiet, severe or mild. Please share this video to help others learn that there are a wide range of tics, and tics are not what you may think. Please share this video to help kids like Dominic, Jayden, Evan, Grant, Rowena, Samantha, Alyssa, and Trey live with more understanding and acceptance from others  http://www.youtube.com/watch?v=XjgIfoSlFqQ&feature=youtu.be 

Videos of My Childhood Tics

For those of you who haven't seen the videos I have of my tics as a child, I put them all together into one video. It helps me to see these videos. It helps me know that i'm not exaggerating, i'm not wrong, I do have Tourette's and have had it ever since I was a child, and I am not somehow making it up. I dealt with it when I was young, and have been dealing with it ever since I was about three, so I can handle it now. Growing up with Tourette's made me strong, and made me into the person I am today. That is what these videos help me to remember. http://www.youtube.com/watch?v=HcjmoaZ1Ylg

The first clip is a a video of quick eye blinking and facial tics. The second clip shows a lip pursing tic. The third clip shows echolalia/palalalia, a vocal tic in which I repeat my own words and the words of others. The fourth clip shows a complex tic which consists of brining my arms upward, widening and un-focusing my eyes, and tilting my head. And the fifth video is the long one which shows many of my tics during a dance class, some of which include licking my hands, small facial tics, ankle movements, hitting my tongue with the palm of my hands and with closed fists, falling on the ground (not sure if this was exactly a tic or what this is really), other tongue movements, and wiping my face with my hands and arms. Also in the end of the video you can hear my mom saying in the background "I can't wait till my husband see's this. At least finally he'll get the idea about what I mean when I say there's definitely something different about her." Every time I hear her say that line it really hits me. I have always been different, even when I didn't know it.

Sensory Processing Disorder Video, Plus my own SPD Symptoms

Check out this great video about sensory processing disorder. It basically describes me as a kid and even to some extent today. Below I have listed all of the symptoms mentioned in the video and have noted which ones I personally have experienced in the past or currently experience in parentheses.  http://www.youtube.com/watch?v=m9l8kQIrmvs

-Trouble making eye contact (sometimes, more when I was a kid)
-Trouble focusing, concentrating, and/or following directions (yep!)
-Selective hearing or difficulty listening (not so much for me)
-Overly sensitive to loud sounds (oh yes!)
-Talking too loud or too quiet (sometimes)
-Make inappropriate noises or repeat myself (you bet! but that's more of a TS symptom for me)
-Always smelling people, food, and objects (yes, especially when I was younger, and I will even catch myself doing it now. However, this one can also be a tic!)
-Chew on everything (I chewed on my hair when I was a kid for YEARS!)
- Resist certain textures like finger paints of play-dough (oh yes! For me the worst are chalk, velvet, and paper when my hands are wet)
-Have a hard time standing in line or staying calm during rest period (UM how can I say definition of me as a child!)
-Poor fine motor skills such as handwriting or cutting (Yes, even today my handwriting is awful and cutting is better but was very bad when I was a kid)
-Clothes look sloppy (not so much for me)
-Shoes on the wrong feet (not so much for me)
-Poor gross motor skills such as running and climbing (yes!)
-I sit with my legs in the "w" possition when working on the floor (Yes! I sat this way since I was an infant until I was in about 3rd grade)
-Walk on my tippy toes (not so much for me)
-Cant sit still (you bet!)
-Have trouble learning or making friends (yes, with a lot of things when I was a kid)
-Be very shy (yes, when I was a kid)
-trouble coping and having a lot of tantrums and melt downs (yes!)
-Afraid of a lot of actives that kids usually enjoy (definition of my life!)

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 :)

TED Talk: The Game that Can Give you an Extra 10 Years of Life (AKA Post-traumatic growth)

I highly suggest that you watch this TED talk if you have TS and if you have ever gone though or are currently going though a rough time with it. It is titled "The game that can give you an extra 10 years of life" and it's all about helping you get though a rough patch in life by playing a mental game.

Several years ago she suffered a serious concussion, and she created a multiplayer game to get through it, opening it up to anyone to play. In “Superbetter,” players set a goal (health or wellness) and invite others to play with them--and to keep them on track. While most games, and most videogames, have traditionally been about winning, we are now seeing increasing collaboration and games played together to solve problems.

It also talks about something called post-traumatic growth. Here is a quote from the talk: "It seems that somehow a traumatic event can unlock our ability to lead a life with fewer regrets".

Just watch it, trust me!!! You will be able to better cope with any struggle in your life after watching this :)

http://www.ted.com/talks/jane_mcgonigal_the_game_that_can_give_you_10_extra_years_of_life.html

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 www.ErasingLimits.com and The Tourette Syndrome documentary project, a collection of personal stories about Tourette Syndrome!

Website: www.ErasingLimits.com
Facebook: www.facebook.com/Erasing.Limits

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 jspershing93@gmail.com.

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 :) https://vimeo.com/66215926

Thanksgiving Break and a Tourette's Story about School :)

Hey guys! I am now on Thanksgiving break and it's so nice to be home! Home cooked meals, sleeping my with puppy, seeing my high school friends! What more could I ask for? So, i'm very happy to be at home, and my friend from high school will be coming over so she can meet my puppy and so we can catch up! I'm excited! And I get to eat Thanksgiving food and it's my birthday in just 7 days!!! Yay!

Anyway, besides all that I wanted to share with you guys a little Tourette's moment I had the other week. At my college, a bunch of Indian dance groups put on a giant Diwali performance in our main theater on campus and I went with a bunch of my friends from my floor to see the performance.  The performance was excellent and I really really enjoyed it! It was 3 hours though and I was holding back my vocal tics, so my motor tics got pretty bad. Luckily I was sitting next to my closest friends in college who totally understand so they didn't even turn their heads when my motor tic where I hit myself in the chest and arm started acting up.

After the Diwali performance was over, we all went to eat dinner on campus. Half way through our dinner, a guy who I didn't know joined us. He knew one of my friends who we were eating dinner with, but I hadn't met him before. I, of course, was still doing my chest hitting tic though. After about 10 minutes of sitting with us he asked me "Why are you hitting yourself in the chest?". I really didn't know the guy and I probably wasn't going to see him again really so I tried to brush the question off without telling him I had Tourette's. He was persistent though and wasn't very happy with my non-Tourette's explanation so he then asked me "Is it like a dominance thing or something?" and then proceeded to imitate my tic.

Lol, a dominance thing! That's probably one of the most obscure things a person has thought my tics to be. Sure I get people who think I am cold, or sneezing, or have a cold, or am just nervous, but i've never really had someone ask me if I had some type of dominance complex before. Lol, I didn't want him thinking I was that weird. I think having Tourette's is much better than having a dominance complex that causes you to hit yourself in the chest. So I just gave in and told him that it was a tic and that I have Tourette's. His response to this was "oh" and then he changed the subject. Lol, I think he felt bad.

Other than that I also made a video for my new puppy Brandy!  I made a video similar to this one when our dog Diva passed away, so my mom really wanted me to make one for welcoming Brandy to our family as well. Enjoy the video! I think it's pretty cute!!!

Making a New Tourette's Documentary with Logan Kurtz!

Logan Kurtz and I are making a documentary about TS in the classrooms. We want perspectives from all ages, you can participate anywhere you live by filming yourself and sending in your video. If you want to film yourself we will happily provide questions to answer in the video and crieria for filming. Let us know if you are interested by commenting on this post or messaging me through my facebook page: http://www.facebook.com/pages/A-Little-Bit-Different-Tourettes-Syndrome/164459540340080?fref=ts

Going to make a Questions/Answers video!!!

So I decided that I'm going to make a questions and answer video on youtube about TS/OCD/any of my other neurological conditions and about my life in general. You can ask me anything! It can be about TS, OCD, SPD, GAD, Panic attack disorder, Dysgraphia, Discalculia, Dermatillamania, college, my childhood with these conditions, or you could even ask me what my favorite color is! Comment here or on my facebook wall with your question and if I get enough questions I'll make the video! :)

My Three Most Painful Tics

A friend on youtube made a video about her three most painful tics and asked others to comment on the video with their three most painful tics. I commented on the video and thought I would blog about it as well! You can see Emma's video about her three most painful tics here:



Also check out her other awesome videos about Tourette's Syndrome on her channel by following this link: http://www.youtube.com/user/lifesatwitchemma/videos


So anyway here are my three most painful tics (3 being least painful and 1 being most painful): 

3. Picking/biting/licking my lips. My lips are usually red, swollen, and sore from all the picking, biting, and licking. This combination of  tics was the very first sign of Tourette's and started when I was just three years old. I have plenty of pictures where you can see my lips are red and raw from the tics. I used to do this tic so much that my lips would bleed. There have been three times where this tic has been absolutely severe and out of control, although this tic is present year round for the most part, just not present to the extreme. The first time it was severe was when it first started when I was 3 years old. I guess it was the most painful at this time because my lips were not used to taking this kind of abuse. Then in 5th grade and 6th grade it got so bad that I would continually make my lips bleed really badly. I would have to leave class on a regular basis because my lips would start bleeding so badly and it would take at least 15 to 20 minutes to stop the bleeding in the bathroom with a paper towel held to my lips. The last time it got really bad was when the lip licking got particularly bad and it was in 11th grade. My lips and the skin around my lips were bright red and it looked like someone had maybe punched me in the face or someone had painted a red ring around my lips. It got to be really painful after about a week of continual licking, but luckily it only lasted a week or so. 
Here are three pictures where you can see the effects of my lip picking/biting/licking tic: 


This one was from when I was 3 or 4 when I first started doing this tic. You can see that my lips have been picked, bitten, and licked  raw. It was painful because my lips were not used to being torn up: 

This was my 5th grade school picture and you can see the cuts and scars on my lips from continually picking, biting and licking my lips until they bled:

And this one is a picture of me with my teacher on Halloween last year where you can still see red and raw sports on my lips: 

2. Swallowing air repetitively. When this one gets bad I have to swallow every 20 seconds or so and it makes my throat really sore and gives me bad stomach aches because of all the air that ends up in my stomach. This is probably the tic I hate the most because I have so little control over it that I can't even hold it back for more than a few seconds. I just feel like i'm going to die if I don't swallow. Die or throw up or pass out. It's really an awful feeling. The only reason this is not #1 is because I only have this tic every few months. Thank goodness I don't have this tic more often. If I had this tic on a continual basis, I really don't know what I would do. Whenever I get this tic, I just want to go curl up in a ball and feel sorry for myself. Even though other people can't see this tic from the outside, it doesn't matter to me. I would rather have many more obvious or embarrassing tics than have this one on a regular basis because its just so awful.  

1. A complex combination tic of falling to the ground on my knees, then hitting myself in the side or stomach with my arm and hand. Sometimes I make a grunting sound as well when I do this tic. As you can tell, this one just sounds painful! Obviously it hurts my knees to fall on them repetitively and then as if that just wasn't enough pain, I usually end up staying on the floor for a minute or two punching myself in the stomach and my side with my arm and hand. Yep, that part sounds painful as well. Trust me, it is. It hurts to get hit in the stomach! I feel like I'm a kid again when my babysitter would play that game with me when she would grab my arm and hit me with my own arm and say "stop hitting yourself! Why are you hitting yourself?" I just thought it was so funny! Except now, its not funny in the slightest. It's painful and annoying and obviously embarrassing! Luckily, I usually don't do this one out in public. I usually only have this tic when my tics get really really bad or when i've been holding back my tics for a while and have to "let it out" when I come home. This is the one I am most worried about with my roommate. If I hold back my tics in class to any extent or get really nervous or stressed out about finals or anything else that might cause stress then I might end up doing this tic in my room and if my roommate is in the room she will obviously see it. This one isn't really a tic you can hide, lol. This is the kind of tic that just freaks other people out, especially if they're not used to it. Maybe i'll get lucky and it will take a break for college. A person can hope, right?