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 Awareness Month

October is Sensory Processing Disorder Awareness Month! So in honor of this, I wrote a poem about my experience with sensory processing disorder. I wrote a poem for my poetry class and it is a Villanelle as well as an ekfrastic poem. For those of you who don't know an ekfrastic poem is a poem that is inspired by artwork. The picture that inspired this poem is the paining "Frägt Sich" by Paul Klee because the look on the child's face in the painting reminded me of the look I have seen on my own face in so many pictures of myself as I child. So below is the poem along with the painting that inspired it placed along side a picture of myself as a child with "the look" that is described in the poem. 

Exit

The look on the child’s face is one I know.
It’s the look of when my head is filled with bumble bees.
It’s the look of when I can’t escape my own body.

It’s in all of my family albums, that look.
It lives behind my eyes, waiting, waiting.
The look on the child’s face is one I know.

My eyes freeze over like popsicles
in the blue of winter.
It’s the look of when I can’t escape my own body.

My muscles stiffen and the voices around me
are put in a blender with thick ice cream.
The look on the child’s face is one I know.

My skin is suddenly two sizes two small
as I am wrapped in the sour itch of woolen socks.
It’ the look of when I can’t escape my own body.

All I can do is read the exit sign over and over again
until my lips are sore from mouthing the words.
The look on the child’s face is one I know. 

Tourette's Poem: Not Letting Her Go

Hey guys! Here is a new poem I wrote for my poetry class about Tourette's. The firrst part of the poem is based on and about when I was holding a young girl's hand at camp twitch and shout who also had Tourette's and I felt like I was holding the hand of a younger version of myself. The second part of the poem is based on this video I have of myself ticcing in dance class from when I was little: http://www.youtube.com/watch?v=9kbKhUk2GsU 

Not Letting Her Go

Passing by the gates of the pool her hand was in mine
squirming like a wet fish.
She bounced as she walked,
her bare feet playing games with the freshly
cut grass that smelled like broken avocados
and dusted peanut shells to me.

She tapped her fingers against my palm like a song
and I held her hand tight so she wouldn’t run.
It was my first time holding a hand so small
a hand so much like my own and
I didn’t want to let her go.

She didn’t know my fear yet.
She didn’t know the fear
burning blue like sulfur flames
pulling air from my lungs,
the fear that suffocates.

I didn’t want to let her go.

It would come later, this knowing,
later when she watched the videos
that her mother had filmed of her in dance class
wearing the pink leotard, the black tutu.

Standing in the line with the other girls,
they would be singing and blowing kisses,
spinning in fluid motions like little pink
wind up dolls in painted music boxes
and she would be trying,
trying to be that little pink wind up doll too.

But she would be interrupted,
interrupted by her own eyes that couldn’t help
opening and closing,
opening and closing.

Interrupted by her hands that were no longer
gracefully rising and falling
but instead had found their way up to her face
on their own,
instead were hitting themselves against her cheeks
and her mouth
and her tongue.

She would taste the salt of her hands
unexpectedly.
Her palms would taste sour like grapes
picked off the vine, still small and green.
Her lips would pucker from the taste
and she would wonder
why she couldn’t keep dancing
why she couldn’t be that wind up doll in the music box.

Then her legs would tighten,
she would fall,
unwillingly,
crumple beneath the weight of her moving body
and the other girls, they would look
and she would feel
ashamed.

My Cousin Needs Your Thoughts and Prayers Right Now

Hey everyone. Please keep my cousin in your thoughts/prayers right now. She needs courage and strength right now as she is going through a very rough time and is in the hospital because of her Tourette's/OCD/Anxiety/Depression. She is going thorough a lot and while I do not know the specifics, I do know she is struggling. I'm worried about her and am keeping her in my thoughts and prayers right now and I am asking you to please do the same. I was just updated by my grandma that she is doing a bit better and is in a better emotional state now, but she is still in the hospital and is still going through a difficult time. My grandma says that we are lucky to have such a close and caring family during these difficult times. 

My cousin is someone who I really care about not only because she is family and because I feel like I know at least some of what she is going through based on my own experiences with TS/OCD/Anxiety, but also because I know beneath all of the things she's had to deal with she is a good and strong person who just needs some help right now. 


I often wonder what leads a person on their path of life? We were both born into such similar situations, such similar lives, and with such similar genetics and disorders. We both are the same age, both have TS/OCD/Anxiety, and both come from similar families. Why does she have to struggle so much and feel so hopeless, while I am able to attend a highly rigorous university and feel like I have so much to live for and so much to be hopeful about? Why do I feel like I am exactly where I want to be in life while she cannot get to a place where she feel this way? 

I want her to know how much I care about her, although I am not sure that she knows this. I want to be able to reach out to her and help her even though my attempts to reach out to her in the past haven't really worked out. I wish I could be there for her and be a person she could talk to who understands some of the things she is going though. Someday maybe we will have this kind of relationship, but I really am not sure that will ever happen.

I just wish she could be in the place where I am now in my life. I wish she could feel the hope I feel and know that no matter what you have or what you have to do through on a daily basis with the cards you've been dealt, you can have a fantastic life and there is so much to be grateful for. I wish she could know happiness, success, and hope.
 
Once again please keep her in your thoughts and prayers. I would really appreciate it.

This is a picture of us together when we were little. We used to love to play Polly Pockets together. We both look so happy together in this picture. I wish things could have stayed this way. Who would have known things would be so different now? 

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 :)

Early Warning Signs for the TS+ Child

This winter break I have spent some time thinking about why I wasn't diagnosed sooner, and why my mom did not see the early warning signs as warning signs as part of the larger picture for a TS+ child. For those of you who are unfamiliar with the term TS+, it stands for Tourette's Syndrome in combination with the co-morbid conditions that commonly come along with Tourette's. I myself have OCD, Generalized Anxiety Disorder, Sensory Processing Disorder, and Panic Attack Disorder (although I haven't had a major full fledged panic attack in about two years), and implsivity issues also known as disinhibition. Some other co-morbid disorders that can come along with TS are ADD, ADHD,  mood disorders such as bipolar disorder, Aspergers Syndrome, rage issues, and other disorders as well.

In this post, I will outline and summarize two of the main types of tics that are warning signs for TS+ in a younger child anywhere from the ages of 2 years old to a middle school aged child. It is important to remember that in order for the types of things I describe to be tics, that they must be repetitive in the sense that you will see your child doing these things over and over again throughout the week, month, or even day. 

1) One of the first classic warning signs for the TS+ child is a simple tic, usually in the face. Simple facial tics like eye blinking, slight facial grimacing, or slight facial twitching will usually be the first tic a child has. After a child's first simple tic, other tics may develop in the trunk, arms, and legs. A simple tic however, is not always the first tic for a child and each child with TS or TS+ will differ in the way they present with various symptoms. TS is a very unique disorder as a result of the fact that every case is different which includes the way the symptoms start. I think my first tic was a slight facial grimace, however it was so subtle that neither myself nor my parents can be 100% sure. I have seen videos and pictures of myself which make it look like this was my first tic which started when I was about 3-4 years old and it probably continued in the same way until a little after 1st or 2nd grade. I seem to find pictures of myself around this age all with a very similar positioning of my face which also makes me think this may have been my first tic. The tic looks like it was a slight facial grimace in some pictures but then looks like a much larger facial movement in other pictures. I really don't think my parents even noticed it at the time. They probably thought I was just a "twitchy" or "nervous" kid. Here are just some of those many pictures: 

2) For some kids, they have more complex tics as children and for some these more complex tics can even come before the more simple tics. It is a little less typical for a child to get complex tics before simple tics, but it can certainly happen. One type of complex tic that can be common in children is what I call a compulsion like tic. These tics appear to be more like compulsions but are tics none the less. Complex compulsion like tics are very common in children to show up at some point in childhood and more commonly show up after simple tics show up. Some examples of compulsion like tics that I had personally when I was younger are skipping, lip/skin picking, lip licking, lip biting, hair sucking, hand/finger smelling, sating off into space/doubling vision, grabbing at various parts of the body, putting hands down pants, and shirt or sleeve chewing. Some other possible compulsion like tics are hand/finger licking, stomping, and other types of complex body movements. It is important to remember that although these tics look more purposeful in nature than a something like a simple eye blink, they are tics none the less and the child has no more control over these tics than a simple tic. Asking your child to stop doing these kinds of tics will only make them worse. Here are some pictures of me doing more complex tics as a child:

Shirt chewing: 

Staring off/doubling vision:

Lip Picking: 

Lip Picking: 

Lip biting: 

Red/scabbed lips because of lip tics: 

Grabbing at neck: 

Answering some questions about Tourette's!

"Hi I'm Ruthie! I am one of the producers of the upcoming documentary about Tourette's Syndrome. I am 18 years old and I am a Freshman in college.

I've had Tourette's Syndrome since I was three years old, but I wasn't officially diagnosed until my Junior year of high school. My tics have changed a lot since I was younger, but I have a few tics that have always stayed the same. Some of the tics right now are head and neck jerking, eye rolling, arm jerking, grimacing, picking and biting my lips, repeating words/phrases that I hear, making a yelping or a squeaking sound, saying the word "ouch", and whistling. I also have OCD which at times has been harder for me to deal with than the tics.

For me, I'd say it would be nearly impossible to pick one single hardest part of having Tourette's. There are just to many challenges that come with having Tourette's and just too many ways it has affected me throughout the years. As a child, the hardest part was not knowing why I couldn't stop my body from doing certain things or why I was different than the other kids. As I've gotten older, I've had to come to terms with the fact that my tics and OCD may never get better or go away. I've had to deal with stares, the judgments of others, and my own judgments of myself. I have amazing friends who support me through everything though, and that sometimes can make all the difference.

I'm a PNP (Philosophy-Neuroscience-Psychology) major with a minor in Creative Writing. My goal is to get a masters and a PHD in PNP and go on to do neruo-imaging research to study neurological disorders and neuropsychiatric disorders. I love to write fiction and poetry, blog, and advocate for Tourette's and it's associated conditions. I also love animals, especially my new Goldendoodle named Brandy :)

I think other people should know that having Tourette's doesn't make us all that different. Underneath our tics and obsessions, we are just like everybody else. We're just a regular people who happen to have tics. Having Tourette's is a part of who we are, but it doesn’t define who we are."

My Personal Essay: "Not in Spite of My Challenges"

Hey everyone! So as promised I am posting my personal essay that I turned in today for my writing one class. It's about my experiences in the classroom with Tourette's. Some parts are not 100% the way it actually happened and there are some facts that are a little altered for the purpose the the essay. Most of it though is very true and it took a lot to actually put it all down on paper. Of course all of the details about my life in the classroom with TS couln't fit into this 4 page paper (because the limit was 4 pages) but I think it's a pretty decent summery. Let me know what you guys think and what your thoughts are about the essay!

Not In Spite of my Challenges

Second grade was the year that was rainforest themed. A good portion of the first week of school was spent making chains out of strips of dark green construction paper that we taped together in rings to put up around the classroom like vines hanging from a canopy of trees. I was pretty good at taping rings of construction paper together and I remember my teacher, her short curly hair and long fingernails painted a sudden red, smiling down at me as I sat cross legged on the carpeted floor. I felt like this year could be different. The classroom was so alive with the vines swinging above our heads as the air conditioning fluctuated and there were stuffed rainforest animals scattered about the room on bookshelves and on beanbags. At any moment I felt as if cool thick rain drops could drip down from the vines and like my favorite song they would turn into sweet gumdrops. I would even imagine myself swinging from the vines with the stuffed animals that would come to life and become my friends so easily. This fantasy world however, soon became an escape from the classroom, just as other fantasy worlds had in years before. Every year, my real friends were animals in my head and there was a much kinder and more exciting world waiting for me when I needed to get away from the disapproving stares and comments that I didn’t quite understand. Second grade was the year I figured out that I really was different than the other kids.

                In second grade, I didn’t understand much about myself or the other people around me. I didn’t understand why things changed so much after that first week. I had had so much fun helping to create our classroom rainforest and my teacher even seemed to like me at first. Had everyone suddenly decided they no longer liked me or had it taken me a week to figure out that everyone seemed to disapprove of me for some unknown reason? I wasn’t quite sure. All I knew was that after the first week of school, the kids started giving me these looks. I had seen these looks before, but this year the kids seemed to be more articulate, more willing to say what was on their mind. They told me I was annoying and when I asked why, this time they weren’t afraid to tell me exactly what was on their minds. They told me that I sniffled too much, moved my face too much, and made weird slurping sounds too much. I hadn’t even noticed that I was doing these things or that they were anything different than what regular kids do, but one thing I had noticed was that year upon year I seemed to hear one particular word from so many of my classmates: annoying.

                From that point on, I used our rainforest classroom as an escape more and more. In my mind, I would curl up in the immense canopy of the rain forest to take a nap or to read with my two best friends, Duke and Duchess, the giant black Great Danes who could roam from tree to tree like the spider monkeys I had learned about in class. When the other kids told me to stop sniffling so much or told me time and time again that I was annoying, I would pretend to pet Duke and Duchess, whose fur felt as soft as powdered sugar.  I told myself that Duke and Duchess would never say such things to me. Duke and Duchess were always my friends, and even if I couldn’t stop myself from doing things that seemed annoyed the other kids so much, Duke and Duchess didn’t mind one bit.

                Each year of elementary school I told myself things would be different, Duke and Duchess wouldn’t be my only friends, and class would be easier for me. Each year however, I seemed to be wrong.  I had a few friends each year, but it was difficult for them to understand why I couldn’t stay still in class or why I couldn’t stop myself from making annoying noises.  I didn’t blame them though, because I didn’t really understand it myself either. As I got older, the classroom was no longer decorated with colored construction paper, and it was no longer a mysterious rainforest or a magical dessert.  There were now overhead projectors, desks lined up in straight rows, and a layer of pressure and silence that seemed to hang over the classroom. The kids weren’t the only ones who seemed to disapprove of me anymore, the teachers did too. My teachers were convinced that I wasn’t paying attention in class because I was moving around too much or using my fingers to write out “fake words” on my desk during class. To them I was a disruption for the other students in the classroom and a hassle for them to deal with. I was always moving and making noises, my handwriting was impossible to read, I didn’t understand math, I started having severe anxiety and panic attacks, and I was obsessive. For me, the classroom became a narrow vacuum of space in which the air was often sucked out pocket by pocket.

 Neither my teachers nor I knew it at the time but I had something called Tourette’s Syndrome, a lifelong neurological disorder that causes involuntary movements and sounds called tics, learning disorders, and anxiety disorders. At the time however, Tourette’s wasn’t understood by most people and certainly wasn’t understood by my peers or teachers. At the time, everyone perceived Tourette’s to be a disorder that just caused people to swear uncontrollably. Only highly trained neurologists knew that only 10% of people with Tourette’s actually have swearing tics and that more times than not the physical tics could be less severe than the other conditions it came along with like learning disorders, obsessive compulsive disorder, anxiety disorders, and sensory processing disorder. It wasn’t until high school that I would actually have a certain diagnosis, and that people would begin to have a more accurate understanding of Tourette’s, but it was a long time before high school when realized I needed to stop waiting for someone to give me an answer. I was convinced that I was the only one with these problems and sometimes this was a rather lonely and hopeless kind of thought. Most of the time I tried not to think about the fact I was different than the other kids, but sometimes I would slip into a stream of consciousness in which I considered myself to be just a weird, nervous, annoying kid who no one understood.

I can pinpoint the point in time in which I promised myself that I would no longer slip into the mindset of feeling hopeless and sorry for myself. I only allowed myself to cry in the shower, when I was surrounded by stark white walls and the heavy falling water coming from the shower head. I could cry as much as I wanted to, because no one would hear me over the sound of the gushing water. It was in 7^th grade however, that I let myself do this for pretty much the last time. I remember crying in the shower and thinking to myself how much I wanted to be a person who was smart, confident, and just someone that other people liked. I knew at this point that I couldn’t control what my body did at times, I couldn’t control what my mind worried about at times, and school was just a lot harder for me than it seemed to be for other people. Crying and feeling sorry for myself in the shower this time was not so different than the many times before it, but this time something in my mind just clicked. I made a decision that night. I made a decision that I would no longer feel sorry for myself because I was going to be the one in control from now on. I couldn’t change the fact that my body seemed to have a mind of its own, but I could change how I dealt with it.

From that point on I promised myself that I was going to succeed in whatever I set out to do, not because of luck or because I was just that kid who didn’t have to try to get an A on a test, I was going to succeed because I would push myself to succeed no matter what it took. I wasn’t going to be that twitchy kid who sits in the back of the classroom and has trouble in school anymore. One day, I was going to be a smart successful woman who people admired and liked even if I had tics and twitches and an obsessive nature that I couldn’t really control. I knew this change wasn’t going to happen overnight, and it didn’t, but I didn’t mind or even notice the wait that much because I was too busy pushing myself forward in every way I knew. I wish I could put into words how I was able to force this change upon my life and upon myself, how I was able to change my grades from C’s to all A’s, gain the respect of my peers and teachers, and begin to exude confidence in a way that I never had before. All I really know is how much I desperately wanted and needed this change in my life. The classroom became a place in which I excelled and was no longer afraid of and most importantly my view of myself changed. I no longer saw myself as a weird, annoying, twitchy kid who no one understood. Instead, I saw myself as a determined and resilient person, not in spite of my challenges, but because of them.

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? 

Elementary School Reunion

Yesterday was my elementary school reunion. The school hosted the reunion since we're all seniors now and will be off to college next year. I knew seeing my elementary school friends would bring back a lot of memories, some of which were not pleasant memories. As i've mentioned before in previous posts, I was bullied in elementary school because of my tics by two boys, but still had 3 or 4 close friends. With my close friends I made excuses. When I was sniffling a lot, I had a "sinus infection" or a "cold" or it was just my usual "small sinuses". When I squeaked or squealed so much at sleepovers that my friends started to get annoyed, I was "stretching my voice" or "being silly". When I grabbed at my crotch area, I ignored the looks and the rude comments from the bullies because there was no good excuse for that one. There were a lot of unpleasant  memories and I just thought I was a really weird or annoying kid.

Since elementary school I haven't seen many people from the class really. I may have run into them once or twice and I spent some time with my close friends from elementary school as well in 7th and 8th grade but that was pretty much it. So this was my first time seeing them really with a diagnosis and a knowledge of what was going on with me all those years in elementary school. It was the first time I could be around them, be ticcing, and not have to think that I was this really weird or annoying kid.

I was doing a fair amount of ticcing at the reunion, particularly my facial tics like eye rolling or mouth opening, but not a whole lot of vocal tics or any major tics that would draw a lot of attention. I just let myself be me though without having to feel bad about which was just pretty incredible considering all the pain I endured in elementary school with these same people. The two boys that had bullied me didn't actually show up though. I don't blame them at all for not wanting to show up. One was held back a year in high school and the other was kicked out of his school for sending out threatening e-mails to the entire school. Goes to show you what kind of people are the bullies and what kind of things they end up doing later on in life.

I had a lot of fun catching up with my old teachers from elementary school and catching up with my friends as well. It was neat hearing where they were all going to college and what they've been up to! My friend who always wanted to be a fashion designer since 4th grade is going to a fashion design school in Chicago and my friend who was always so smart is going to Cornell. We all reminisced on old memories of how we used to ask each other about our pets when we had nothing to talk about, old songs we were forced to sing in music class, and our class trip to Chicago.

We all ate lunch and sat outside on the front lawn of the temporary school building because the building recently had a small fire in the attic and has to be repaired. The ironic part was that when we stepped in the building, I immediately recognized it as the place where I had OT (Occupational Therapy) for my Dysgraphia and Sensory Processing Disorder back in 3rd and 4th grade.

Also another thing was that my friend Sabrina actually brought up a time from elementary school when I was ticcing. We were talking about our class trip to Chicago and I couldn't remember who I roomed with so I asked my friend Sabrina if she remembered. Sabrina did remember and said that I shared a room with our friend Kelly who had later the next day told Sabrina she was slightly annoyed with me because I had been "stretching my voice" so much. I was surprised that she actually remembered this, because I didn't even remember it that well. I guess I have vague memories of it, but I can't even remember if I was doing it in the morning or at night or how Kelly reacted at the time. I guess it was just normal for me, so it wasn't too memorable at the time. Sabrina is the only one in the group who actually knows that I have Tourette's so I guess it all makes since to her now. I got a few stares when I was ticcing from the other kids who were in the class, but hey i'm used to that. They stared once or twice then got over it. For the most part, no one gawked or asked questions, but I wasn't even ticcing half as bad as I do sometimes.

We rapped the reunion up with trying to replicate our 6th grade class picture with the people who were there. The whole class didn't show up, but there were certainly enough people there to replicate the picture pretty well. And we all got Alumni society cups! After the reunion was over my group of friends from elementary school decided that we all wanted to go get smoothies. Three of my friends rode in one car, and I rode with Sabrina. As i've mentioned before, car rides set my tics off, but since we were talking and trying to navigate our way to the smoothie place my tics didn't get that bad. I did a few vocal tics in the car and the first time I did a vocal tic, Sabrina said "That didn't really sound like a sneeze? Was that a sneeze?". I told her that no it was not a sneeze but I was having a good time and didn't want to dwell on it or get into a conversation about it so I quickly changed the subject.

We ended up getting lost thanks to the great map program on my iphone, lol. But we eventually found our way to the smoothie place. We were a little later than the other three girls, but we still got there with plenty of time to get smoothies and hang out. I got a raspberry smoothie that was too sour, but I didn't really care because I was just having fun catching up with Sabrina and the rest of my friends from elementary school. Since I had been on the car drive, my vocal tics were still acting up a bit and I was doing some vocal tics in the smoothie store.

When I did tic, no one really reacted except for one girl who I wasn't really ever that close of friends with. I assume that means that the rest of them had some idea about my Tourette's from some of my video shares on facebook and from other kids who were in our class who know now. The girl that didn't know though said "What was that? That was really adorable!" and she started laughing a bit. I just laughed along with her and instead of giving her an explanation I just moved on to the next subject. I didn't really feel like explaining since I probably wouldn't hardly ever see her in the future and I didn't want to put a damper on the mood or anything with a serious topic like Tourettes. Hey don't get me wrong, I educate a lot of people about Tourette's and usually take the times I tic as an opportunity to educate and explain about Tourette's, but I do pick and choose when is the time to educate and when is the time not to educate.

Overall, I had a really great time at the reunion!! I loved seeing all my friends from elementary school, catching up, and reliving old times. Most of all, I loved not having to feel like "that weird annoying kid" that I always used to feel like. Instead I just was able to be myself which meant being okay with the fact that I ticced around them and not even feeling it necessarily to give the whole Tourette's explanation as a way of explaining that I really wasn't just a weird annoying kid. I knew inside of myself that I wasn't just a weird and annoying kid. I know I have Tourette's and that my tics are just part of me and that's what really matters in the long run.

My Dad's Side of the Family Definitely has OCD and Tourette's!

Ever wondered where I got my OCD and Tourette's from? Well from right here of course!

Well not exactly from shirts hanging in a closet! But compare this side of the closet to my mom's side of the closet and I think you can start to get the picture! 

A bit of a difference there, huh? Well, the first picture is my dad's side of the closet, and you can tell that it's quite a bit different from my mom's side of the closet. Not only are the shirts ironed and flattened perfectly, but each hanger is exactly the distance from the hanger on either side of it. 

That's because my dad has OCD, and as you can tell, my mom does not. My dad's hangers HAVE to be exactly the same distance from the other hangers in his closet as you can see, and as he has mentioned to me before it is one of his many OCD "compulsions". You don't have to live with my dad for very long to know that he has OCD, and living with him for my entire life, it sure would have been hard to miss the OCD. 

I remember that when I was a kid, my brother and I would play little games with him to see how long he could go without his OCD taking over. Of couse we didn't know that this thing he had was called OCD, we just thought it was funny. One time my brother kept dropping peas on the table by accident and my dad kept putting them back on the plate. He just couldn't stand seeing even one pea on the table! Then either my brother or I (I don't remember which one) decided to purposely put the pea on the table and start joking with him and say "let's see how long he can stand it without putting the pea back on the plate!". My dad waited a few seconds then just had to put the pea back on the plate! We started laughing because we just thought it was so funny! It was all in good fun though! My dad and mom were laughing right along with us. 

Another time, my dad ordered a beer sampler when we were out to dinner. When the beer came, there were 5 little cups and in each cup was a different kind of beer that was shaded a different color. They came all jumbled up and my dad just HAD to order then from darkest to lightest in a straight line. My brother and I thought this was very funny as well! 

There have been a lot of moments like this over the course of my childhood, and i'd have to say that it's pretty clear that I got my OCD and Tourette's from my dad and his side of the family. Whenever it comes up, my mom will say "Oh yes, my husband definitely has OCD". 

My dad also has some tics but it is a very touchy subject for him. No one ever brings it up, and he never talks about it. Ever night when my dad comes home for dinner, he makes these gulping/hiccuping sounds and he has been doing this for as long as I can remember. His body will also suddenly do these little jerks/twitches every once in a while and sometimes he will do a quick shivering movement when it isn't even cold in the room. 

My dad isn't the only one on his side of the family who has OCD or tics though, not surprisingly, since it is genetic. My dad is one of 4 brothers, and at least three out of the four have clear OCD. One of my uncles asked for a vacuum for his 6th birthday, and when he got his very own mini vacuum, he went around for weeks as happy as can be vacuuming every dust particle in sight. He gets very embarrassed when my grandma or anyone else brings that up though! And sure enough a good majority of cousins will routinely report that his or her dad clearly has OCD. In addition, I have two other first cousins on my dad's side that I know of who have been diagnosed with Tourette's and/or OCD. 

So my Tourette's and OCD is obviously genetic! I know that much for sure. My mom has also now become convinced that my brother has Tourette's as well. We've known he has had tics for a while, but he recently started doing a humming noise and a lot more blinking and mouth opening. Since he is 15 and is very insecure about this kind of stuff though, my mom doesn't dare even try to bring him to a neurologist just yet. Whenever my mom hints at anything in the anxiety/tic department, my brother will get VERY angry with my mom and will tell her to never talk about it with him again. So she is hoping that in a few years he will mature enough so that she can get him to a neurologist.

She mainly wants to get him diagnosed so that he will be able to have the accommodations he needs for the SAT/ ACT which he will take in just a few years. She also wants him to one day be a Tourette's Syndrome Youth Ambassador and go up to Washington DC for the TSA Youth Ambassador conference since we found out about the TSA Youth Ambassador Program too late for me to get involved with it. She thinks this will look really good on his college application and knows that if my brother ever became more secure about his tics that he would just love it because of how much he cares about and loves helping other people. Well we will see how that plays out over the next few years. I can tell you one thing for sure though: if he does ever become a TSA Youth Ambassador, I will be soooo incredibly jealous!!!