Thursday, October 31, 2013

Shoulder pain

My shoulder started hurting last night and still hurts today. I'm pretty sure this is because of my shoulder cracking/ rotating tic. My OCD always goes crazy with these kinds of things making me worry about crazy things like having to get a shoulder replacement or surgery.....I know its not realistic that this small pain would necessitate that, but that's OCD for you. Oh and Happy Halloween! I'm going to a sorority Halloween pumpkin carving mixer tonight! :)

Tuesday, October 29, 2013

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.

-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!)

Setting Up an Appointment with my Neurologist for the Colondine Patch (check!)

Well it's official now. I set up an appointment with my Neurologist to get information about/try out the Clonodine Patch as medication for my tics. I'm nervous but a small part of me is excited too. I am starting to like the idea of a decrease in my tics more and more. I think at first I was just nervous about the change. Now that i've had a little time to mentally adjust to the idea, I feel better about taking this step. My appointment is November 20th at 3:00, less than a month away. Wish me luck!

Called My Neurologist

Well I did it. I called my neurologist this morning to set up an appointment to get information about the Clonodine patch that helped my cousin become tic free. My neurologist technically is a pediatric neuro, but the scheduling person is going to e-mail him to see if he will see me even though I am 19. The movement disorders clinic will call me back after they find out if my old neuro will see me. 

I never thought I would be seriously inquiring into medication. I am certainly surprising myself. We'll see where this goes from here. I think I am getting more used to the idea of medication and also more used to the idea of my tics getting better. 

Clonodine Patch?

So long story short, my cousin and I have been connecting a lot through text. I am so glad we have a better connection now. She makes me feel so understood, which is something I rarely get from family. She understands me on a level like no other, like the people at camp. 

The only thing is that she's been on this thing called a Clonodine patch for a year and says she is 100% tic free. I think this is fantastic for her and I am so happy she doesn't have to deal with tics anymore. It's just I guess selfishly it makes me feel more alone. I shouldn't feel this way because regardless of if she has tics or not right now she still has Tourette's none the less like me. I have a bit of a decision to make though now. Our cases are so similar and our genetics are so similar that the clonodine patch could help me a lot too. I can't beleive i'm saying this, but i'm more afraid it will make me 100% tic free than I am afraid of any possible side effects. I've had tics for so long now and my tics are a part of me. I am afraid of not having my tics. Sure I would love to not have to supress in public or to not have that feeling that I need to tic during a movie or in a big class with lots of people in it and have to supress it. But what about when i'm with my friends? what about that feeling of love and acceptace I get from when i'm ticcing like crazy and my friends treat it as if it it 100% normal? What about that feeling of love and acceptance I feel at camp? Would I still have that feeling there without my tics? Would I still feel like I belong there? What about how my tics make me feel special and unique? Would I still feel special and unique without my tics? I don't know.

Gosh there are so many emotions wrapped up in this. But I feel like I don't have a choice, the possible benefits to my health and well being that this patch might create outweigh my feelings of what I would miss about being a ticcer.

I can't know 100% that the patch would get rid of my tics, it's only an assumption based on what it did for my cousin. But it's running me though a lot of different emotions right now. I think most of all I am afraid of change like always. I never have liked change, and this would be a major change. 

Sunday, October 27, 2013

My Cousin is Coming to Camp! So excited :)

I'm so excited! My cousin is going to come to camp twitch and shout to be a counselor with me next year! I had brunch with her today and she was doing so well. She is peppy, lively, and back to her regular self. She seemed really glad to see me and we had a great time. I think we may finally be forming that relationship that I have always wished we had. I can't wait to go to camp with her next year! I know we will bond even more at camp because you just bond so much with all the other counselors at camp. She is super excited to be a counselor this summer and now I also get to have an airplane buddy! Last year I had to ride the airplane alone, which made me pretty uneasy. But I got through it!

At brunch it was so nice to talk to her about camp and about Tourette's in general. We only talked about it for about 10ish minutes, but when we did it was just so incredibly nice. She talked about tics like they were so normal, explaining to my grandma what it was like to pick up someone else's tics by saying "See if you started clicking your tongue a lot right now, I would want to start doing it too". It was such a neat thing to hear a family member talking about tics like the are normal. I can't really describe exactly why I found that so amazing, but I did. Maybe it's because It's just so neat to know someone else in your family knows what it's like to have Tourette's and live with it on a regular basis. It makes me feel so much less alone.

Also I found out the reason she wasn't responding to my texts from before was because they never went through! She was never ignoring me, she just simply didn't get the texts. I texted her later today about camp and since she had her phone fixed, it went through and she responded back quickly telling me she is super excited and can't wait to go camp with me and experience it and saying she also enjoyed having lunch with me and that we'll have to do it again 

Friday, October 25, 2013

Busy Weekend!

Busy busy weekend for me!! This weekend is parents weekend at my university so my parents will be on campus tonight for a special parents Shabbat dinner. Then tomorrow I get to hang out with other awesome ticcers like me at a teen/young adult TSA event! Then that night I am going to game 3 of the world series with my grandparents and younger cousins who are in town for the word series from New York. Then on Sunday I'm having brunch with my grandma and my cousin who is my age and also has TS, and then I have a business formal sorority event that night. And on top of all this I have an essay due Monday! Yikes! Lots to do this weekend. Hope I can do it all :) 

On another note, my tics have calmed down a bit from a few days ago when I posted about my hitting tics. Thank goodness for that! I will need to save all the energy I can so that I can use it productively this weekend :) 

Tuesday, October 22, 2013

Hitting Tics

I've been having a lot of hitting tics lately. I've been hitting my chest, shoulders, arms, tables, and walls a lot. I'm tired of these tics because more than any other tics they hurt. Sometimes it makes me feel a bit better to wear my camp twitch and shout "Tourette's tics me off" wristband, so that's what i'm doing today. Tourette's is really ticcing me off right now, so the bracelet really seems to be fitting my mood today. Sometimes I feel like I get all dressed up, I put on nice make up, nice earnings, am really happy with the outfit I picked out today and then I feel like my tics kind of ruin it all. Sometimes my Tourette's makes me feel special and unique and other times it just makes me feel different. 

At least I get to look forward to hanging out with other ticcers this Saturday at our next TSA event! I'm excited for that, especially since I know that there will be people who are my age at this event. It really helps me to see and talk to other people who tic who are my age or older. It makes me feel less different, and helps me to remember that my tics are just a part of who I am. Even though sometimes I feel embarrassed by my tics or angry at myself for not being able to stop, being with other people who have Tourette's helps me realize that it's just something that is a part of me. I can't just stop ticcing, it's something I cant change, so why not look at it in a good way. Let's put it this way, if someone told me tomorrow "I'm going to take away your Tourette's forever!" there might be a part of me that would be very happy about that in the short term, but most of me would shout "NO! I wouldn't be a counselor at camp twitch and shout, I wouldn't be on the board of the TSA in my area, I wouln't have amazing heart to heart conversations with other people who have tourette's or who dont have tourette's, I would be deprived of so many good things in my life right now that make me special and make me who I am!" That is what I try to think about 

Sunday, October 20, 2013

A Text that Gives me Hope About My Cousin!

I am feeling really good right now for a number of reasons. First, I am finished with all my midterms for now. I had about five major midterms last week and finished them all on Thursday. Then I got to come home on Thursday night since it's fall break and I got to spend three days at home with my parents, my dog, and my brother. It was such a nice break from all the stress of college life.

Most of all though I am very happy right now because my grandma made my night earlier tonight. As those of you who follow my posts know, my cousin who is my age and who also has Tourette's and OCD and it's other various co-occouring conditions was in the hospital for three days last week. She came back home five days ago and the day she came home my grandma told me she sounded good over the telephone but I was still not convinced. I was really worried about her even though I knew she was home. I was worried she would go back to the hospital and wouldn't be able to stay home. I was almost waiting from a text from my grandma or a post on facebook from her brother saying she was back in the hospital. I was worried she wouldn't recover and that things would just go downhill from here.

My grandma texted me tonight though and her text gave me so much hope! I have been trying to reach out to my cousin and connect with her on a stronger level ever since I found out we both have a Tourette's + (tourette's and all the co-couriering conditions that come with it) diagnosis. I thought of how amazing it was that there was someone else in my family who was my exact same age and also has Tourette's +. I thought how neat that we both are going through similar things and how great it would be if we could have a strong relationship and really be there for eachother. I had been alone for so long with my struggles, had had no one to talk to about what I was going through, and felt like no one understood me. I thought if she felt anywhere near the same way that I did that she would want to have someone to talk to and confide in as much as I did. It would have meant so much to me to have someone like that in my life when I felt like no one around me could understand. It didn't quite work out though. I'm not sure why. I reached out to her at first and we had a huge heart to heart conversation over text. I felt like finally I was going to have that person in my life who would understand me, but somehow the closeness we had those few days when I told her about my diagnosis did not transfer to closeness in real life. I wasn't sure why, maybe it was my fault. Maybe I didn't communicate what I felt in real life as well as I did through text. So we took a break from talking for a while, and only saw each other briefly at family events.

Over the summer I really wanted to get together with her and talk with her because I knew she was going through a rough time. I wanted to be someone who she could trust, confide in, and talk to. I wanted to be there for her when she was having a rough time just like I would have wanted someone to be there for me when I was going through my rough time. We both know what it's like to struggle as a result of Tourette's and it's co-occurring conditions. Although I don't know the specifics of what she is going through, I have gone through a lot of hard times myself and I know what it's like to go through those hard times alone. I know what it's like to have those who love you surrounding you but still to feel like they don't understand and you can't talk to them about what exactly is going on. I don't think she was ready though to connect with me at that point and time because of what she was going through. I know what it's like as well to be so overwhelmed by everything that anything else on top of what you already have to deal with, even connecting with someone who is trying to reach out to you, would be too much.

My grandma's text tonight is the first thing that's given me hope in a while that we will be able to connect and form that relationship that I always hoped we would have,  She texted me ironically while I was in the middle of writing a poem for my poetry class about my Tourette's. The texted me and said that she had talked to my cousin and she is doing very well and that they had talked about the three of us having brunch on a sunday (my grandma, my cousin, and me). This made me so excited! The idea that she is actually wanting to get together with me and hopefully having my grandma there with us will make her more comfortable because she has a close connection with her. Then she said something that really told me that my cousin is actually doing really well! She told me that my cousin had mentioned today that she wants to go back to camp twitch and shout and be a counselor there. This is huge! And I mean really huge! The fact that she wants to go back to camp and be a counselor tells me that she is actually doing  really well and not just putting on a happy face for her grandma. This makes me think that going to the hospital was a good thing for her. I think things may be turning around for her for the better if she really is considering going back to camp! It would make me so happy to go to camp with her and to both be counselors there. I know that that would make us closer than anything else could. Maybe if we both went to camp together, we would finally have that relationship that I have been hoping we could have. This made my night! I wish my cousin knew I felt this way. I may text her and let her know that I am so happy to hear she is doing better. Even if she doesn't respond to my text message, hopefully she will get it, so at least she knows how I feel. I think she knows somewhat that I really care about her though because I know my grandma has told her that.

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. 


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. 

Post from Last Week: Joining my College's Disability Awareness Campaign Club!

I joined my college's disability awareness campaign/ club officially yesterday and attended their first meeting! I'm very excited to be involved with this and am looking forward to helping plan their events. Our next event is in November and we will be showing a disability related movie (yet to be decided on yet. we will do that at our next meeting) on the campus in a popular hang out area called Ursa's. I'm excited that i'm getting involved with this and that my university even has this club/campaign. Gives me hope! 

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: 

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
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,
crumple beneath the weight of her moving body
and the other girls, they would look
and she would feel

Tuesday, October 15, 2013

Having to Convince Myself that Others Do Not View my Negatively Because of My Tourette's

Today my creative writing seminar had a guest poet, Professor B. She is such an inspiration! I love her poetry and how she explained her process of writing and the different ways she goes about writing poetry. After listening to her speak I just wanted to go back to my dorm room and write poetry, but unfortunately I had a lot of homework and studying for classes that I just now finished. Anyway, as I mentioned in a previous blog, my creative writing seminar professor e-mailed me about if I would like her to inform guests about my Tourette's. I told her that she has my permission to educate all future guests about my Tourette's and that it will be very helpful! I also gave her some suggested language to use when telling the guests about Tourette's which she found helpful as well.

She must have done a very good job educating our guest poet, for today because I had no troubles at all. Professor B didn't even bat an eye when my vocal and motor tics became pretty frequent only about 5 minutes into class and pretty much stayed that way for the rest of class. I was doing lots of motor tics, but the ones that seem to draw the most attention are my vocal tics. The ones I was doing in class today were my high pitched squeaks, a sound that sounds like "uh" "uh" or "ah" "ah", and my tic where I say "woof". I really appreciated this positive experience with a new professor who I had never even met before personally and was very impressed with my professor's ability to advocate for me so that there were no problems at all with the guest poet.

Sometimes I have a nagging feeling though when i'm having a lot of tics in a class or when I meet a new professor or adult that I haven't previously talked with about my Tourette's that the professor or adult has an automatic negative feeling towards me and my tics or is annoyed by them or doesn't like me because of my Tourette's. I think I have this nagging feeling not because it is true in any way, but because of what my parents told me around my initial time of diagnosis. They told me that I shouldn't tell anyone about my Tourette's because it will close doors for me, those who I tell will look down on me, and that it will effect the way people view me and cause them to look at me in a negative way.

 Since my initial time of diagnosis I think my parents have changed their attitude about Tourette's a lot. They now know that most people do not react in that way and it is very rare to find anyone who will react in that way. I know though that especially my mother and my grandparents, although they have made a lot of progress, still harbor feelings like this that others will look down on me for having Tourette's. For a 16 year old who was just diagnosed, hearing this from my parents was very damaging and hard to take in. It has taken a lot of time, thought, persuasion by others, and positive examples of others who have TS, and positive experiences of my own for me to overcome the effects that was caused by the things my parents initially told me.

Their words still affect me though, even now, even after I have had so many positive experiences that tell me the exact opposite of what they initially told me. I have had many professors and other adults tell me that they are inspired by my ability to advocate for myself and others, that they admire my strength, and that my Tourette's does not change the person I am. The fact that I tic, even when I am ticcing a lot, does not change who I am as a person and does not change how others view me. I have to remind myself of this a lot though and it is not something that I naturally know or feel. Since my first experiences with my Tourette's and adults in my life was so negative, I have to almost constantly remind myself of this. I frequently have to call to mind the exact positive experiences and exact positive words that others have said to me about my Tourette's to convince myself that others do not look down upon me or view me negatively because of my tics. This may also be my OCD coming into play here, especially the trying to convince myself part and having to "replay" positive events in my head as well, because those tend to be typical aspects of the mental compulsions of OCD.

 I just wish though that I knew in my heart that others do not look at me negatively because of my tics and that I did not have to try to convince myself  that others see me for who I am and not just for what I have. I feel like I know intellectually that it's not true that others see my tics and my Tourette's as something negative or look down on me for it, and I have so many experiences that confirm this. I just wish I knew this with more conviction emotionally as well.

My Cousin is Back Home!

My cousin came home from the hospital tonight! She is at her dad's house. My grandma talked to her on the phone and says she sounds good. I don't know anything else besides this really, but I am so glad she is no longer in the hospital and is in a much better emotional state. I am so glad she is doing better. I was worried that she would be in the hospital for a long time or not be able to get out for some reason. My anxieties about this have been quelled and I really really hope that things only get better for her from here! Thank you all for your thoughts and prayers :) 

Sunday, October 13, 2013

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? 

Saturday, October 12, 2013

The Issue of Inclusion and Exclusion with Tourette's Syndrome

On Wednesday unfortunately I had to go to the campus art museum again, this time with my poetry class. Even though I knew no one would kick me out or probably say anything to me about my tics, I just get so self conscious about my loud vocal tics in new environments that are so quiet and I was still feeling a little emotionally vulnerable/embarrassed from when the professor had singled me out for ticcing during the last poetry class, despite the fact that he really didn't mean to be insensitive or to embarrass me and had even apologized. The fact that I knew we were going in to the art museum though really was working my anxiety up to. We started class outside and even though I wanted to enjoy the fact that we were having class outside, I couldn't because I knew we would be going inside the museum. I wanted to participate in discussion during our outdoor class but my anxiety was just so high that I couldn't. I was doing a lot of vocal tics and wasn't participating in class and that was making my anxiety even worse.

By the time we went inside the museum, my tics were really bad and my anxiety was really high. Luckily though we ended up having a private viewing that had been pre-arranged and set up in a class room in the museum. I was glad when I saw that we wouldn't actually be going into the real museum area but I couldn't seem to shake my anxiety. My motor tics kicked in really badly and I started a new motor tic where I lift my tighten my arms and clench my firsts against my chest and jerk my head downwards and do a bit of a full body jerk as well with it. It's been a long while since i've had a new motor tic. My anxiety stayed high all of class and I didn't say a word in the full hour and a half even though I knew participation is so important. Hopefully the professor will not dock me off points for not talking in class, but my anxiety was just to high to even speak.

After class my professor came up to talk to me me. At first I was afraid he was going to say something about me not participating in class, but luckily he didn't. For poetry class we have a requirement to go to at least one poetry reading and write a response about it. He came up to me to let me know that I don't have to go to the reading and I can just watch a poetry reading online because of my vocal tics. At first I was really glad that he gave me this option. It makes things a lot easier for me not having to worry about going to a reading. But soon it gave me a very uneasy feeling. It was upsetting to me for some reason. At first I wasn't sure why I was so upset my this. I get accommodations in college for taking tests, I get to take them with extended time in a separate room, and I also am allowed to skip a day of class or turn in an assignment a bit late if I have a day where my tics are just out of control  But somehow this was different. Somehow the fact that my professor was telling me to skip the reading made me feel limited and more different than I have felt in a long while. I wasn't exactly sure why, but it made me feel as if I have a disability. I don't think of my Tourette's as being a disability. I don't think of it as something that limits what I can and can't do. I think of it as a disorder that I need to explain to others a lot of the time, but not as something that limits my abilities. I wasn't sure exactly why it made me feel this way, but it did.

Later on that same night my creative writing seminar teacher e-mailed me about our special gathering and reading that was going to be held the next night. In many ways, this reading would be similar to the poetry reading. I was aware the special reading/ gathering was going on for all of the people who are in this special creative writing seminar, but I would have never thought I was unable to go to this because of my Tourette's. The thought had not even entered my mind. My professor for this class didn't think of that either, she didn't think that I wouldn't attend because of my Tourette's. Instead in the e-mail she asked me if I would like her to educate our guests that would be coming to the reading about my Tourette's. This is the e-mail she sent me:

"I meant to ask you this today and forgot. Would you like me to let the guests who are coming to read in the program tomorrow know that one of the audience members has Tourette's and that there may be some random sounds? Forgive me if my desire to be sensitive comes off as insensitivity."

Now that is more like it, I thought! My professor is not asking me if I wish not to attend because of my Tourette's, but instead is assuming that of course I will attend, there may just need to be some education put into place before the event so I can be a part of it.  There is no need to exclude me from events like this, instead there just needs to be a bit of education (which she was willing to help me out with) so that I can be included in the event and not have to be nervous about how the guests will react. This is the e-mail I sent back:

"Thank you for thinking of me and for e-mailing about this. It would be great if you could mention something about my Tourette's to our guests for tomorrow. Probably the best thing to say would be something similar to what I usually say, that Tourette's causes me make noises, say words like "woof" and "no" (I keep forgetting to mention this part because the word tics are so new for me!) and have movements that I can't control.

Thank you again for asking me about this. You have my permission to tell all future guests because it really helps in order to avoid uncomfortable/upsetting situations for me. Guests or professors who don't know will tend to stop their lecture or reading to draw the entire class's attention to my tics by either asking me why I am making noises or by asking me to stop because they think I am either being disrespectful or purposefully joking around to disrupt class. This can be very upsetting for me and telling guests speakers/ professors in advance will mostly always prevent anything like that from happening! "

and then again this was her positive responce:

"Thanks. I will let our guests know. And thank you for suggesting how to phrase the message. That's very helpful. See you tomorrow."

After this correspondence, I knew more of why my poetry professor's comment about me skipping the reading upset me so much. Inadvertently, while trying to help me and trying to be sensitive to about my Tourette's, he ended up excluding me. He did not mean to do this and was really only trying to help me, but none the less I was not being included.

The issue of inclusion and exclusion has never really been an issue for me before growing up in my small bubble and being in an environment where everyone knew about my Tourette's in high school. Even with my loud vocal tics and frequent motor tics, I was never once asked if I needed to sit out of class, if I needed to skip school assemblies and speeches. I was included in everything.

I of course have been excluded in ways before. I think everyone has been excluded at one point in their life or another. As a child,  I was left out of birthday parties given by the "cool" kids because I was "different" growing up. I was excluded from sports games on the playground by other kids because my sensory issues prevented me from being able to play sports like the other kids, and i've been excluded from sleep overs or camp activities or social circles growing up. All of this I am used to and I think everyone knows what this feels like to some extent.

Armed with the knowledge now though of how to express myself, how to deal with my sensory issues, anxiety, OCD, and tics, and how to explain my conditions there is no need for me to be excluded. It's too late for me to go to the reading, since i've already missed the last one on campus. I am not extremily upset though that I missed it. It was a learning experiance that I have not had before. I know now that next time if it ever happens again that a professor approaches me about needing to skip a reading, movie viewing, or another type of event for a class because of my tics, I will strongly stand up for myself and express that I am able to attend these kinds of events. We may need to educate the guests at the event, but as someone said to us at camp, "Tourette's should be used as an explanation, not an excuse." Tourette's is an explanation for why I make noises and move around in different ways, but it is not an excuse for me not to attend events or for the professor/ school to not include me in whatever the rest of the class is doing.

A Professor's Reaction to One of my Tics and then A Trip to The Art Museum and Tourette's

Last week three things happened with my Professors that I didn't know exactly how to process emotionally at first. I'm still not sure how I am processing these three things emotionally. I've never had a week where so much has happened like this with my professors. It was very strange but I guess most of it happened as a result of the fact that my tics were bad last week, especially my vocal tics. I haven't felt like writing about them until now really because I wasn't sure how I would write about them on an emotional level. I'm still not quite sure what I will end up saying, but we will see.

The first thing that happened, happened on Monday. I was in my poetry writing class and I was doing my high pitched whistling tic a lot (just about every few seconds). My poetry professor and my poetry class all know about my tourette's, just like all my other professors and small seminar classes. For some reason though I guess my poetry professor just wasn't thinking and he blurted out "does anyone here that noise? is there a bird in here?". I think most of the class knew that the whistle was one of my tics and I was really surprised that my professor didn't realize it was a tic since I do a lot of vocal tics in that class on a regular basis. I didn't say anything to his first response because I was kind of embarrassed. I tell my professors and my classmates about my tourette's in advance so that this specific situation doesn't occur, so the professor doesn't have to stop his lecture and draw the entire class's attention to my tics because that tends to really upset me. So I didn't say anything in response to my professors first question about my tic, in hopes that he would quickly realize and then move on. However a few minutes later again he said "really? does anyone else hear that? what is that noise?". Because it was the second time he had said this and he just didn't seem to be realizing that it was a tic, I spoke up and said "That's me. It's fine." I guess I said the it's fine part because I knew that as soon he realized it was a tic he would feel embarrassed or like he had offended me and I didn't want him to feel that way because he's really young and I know he didn't mean any offense; he just wasn't thinking.

Later after class when I went to pick up my assignment from the week before he apologized to me. He said "Sorry about before. I really didn't mean to be insensitive" and I responded with "it's okay". Even though I said it was okay, I didn't know if I actually was. This is really only the second time a professor/teacher has ever stopped class to ask about one of my tics. The first time was back in high school before I was even diagnosed. I guess the fact that this is only the second time this has happened in class means that i've done a pretty good job of advocating my professors and classmates which is of course a good thing, but I was still kind of upset that it happened. I felt singled out, and I really hate it when professors single me out. But overall I got over the embarrassment and tried to brush it off as just a part of living with tourette's. I talked to my friend from my dorm and my friend from camp twitch and shout about it and they were both very supportive, listened to me, and told me good things. Their support and friendship really helped me and I moved on with my week.

I thought I was done with my Tourette's related events for the week, but boy was a wrong! On Tuesday my creative writing seminar class paired up with the freshman creative writing seminar class for a visit to the campus art museum for writing inspiration. I knew that this was going to be happening but I didn't know that we would be pairing up with the freshman group as well. I immediately got nervous because I knew my vocal tics were going to be bad (since they almost always are in these kinds of situations and since they had been particularly bad that week anyway). I knew I was going to have to tell the group about my Tourette's, which I was kind of not happy about because I thought I was all done talking to classes about my Tourette's and was glad I had gotten through that part of the semester. So when sat down in the classroom and my professor had us go around the room and introduce ourselves, I introduced my Tourette's as well, even though half of the group had already heard my little explanation. I said my typical line which always tends to be some variation of "Something you should probably know about me is that I have Tourette's, so if you hear some random noises, it's probably me. You can just ignore it for the most part. I'm sorry if it bothers you at any point, but I promise you it bothers me more." The group seemed to be receptive about it and I didn't have any troubles with the group even though my vocal tics did end up getting pretty bad in the hour and a half I was with the group. We went into a quiet part of the museum, with security guards walking around which made me extra nervous so my tics really started acting up then. Luckily even though I was making pretty loud noises, no one in the class said anything to me about it and none of the security guards did either. Education is a great thing! But I still felt very self conscious about my tics in such a quiet environment even though everyone in the class knew about my Tourette's.

Thursday, October 10, 2013

Like the TS awareness photo campaign facebook page!

Hey everyone! Come over and press the "like" button for the Tourette's Syndrome Awareness Photo Campaign facebook page! Even if you aren't planning on sending a picture in, like the page and share it too!

Ways you can help me start up the Tourette's Syndrome Awareness Photography Campaign.

Ways you can help me start up the Tourette's Syndrome Awareness Photography Campaign. 

Submissions can be sent to me in a message or to 

1. Help me come up with a creative name! If you have name suggestions, please comment below, message me, or send me an e-mail at 

2. Send in a photo! In order for your photo to be a part of the campaign, it needs to be high quality, creative, and probably will have to have taken some preparation. Anyone can take a high quality, moving, and amazing picture with the right preparation, time, and effort. The photo in some way should say something about Tourette's Syndrome or its associated conditions. Along with your picture, send in a title for it and a description. The title can be as short as a few words or as long as a paragraph or a short essay. Describe to the people who might view this picture what is going on in the picture. You can say as much or as little as you want to. Here are some ideas/ idea starters for a picture:

-Picture of your child or yourself ticcing (mid simple tic, mid complex tic, mid vocal tic)
-Picture of your child or yourself doing an OCD ritual
-Picture of your child of yourself doing something that has been caused by Sensory Processing Disorder (example: covering ears, covering eyes, laying on the floor because of over stimulation, picture of your or your child's own unique way of dealing with over stimulation)
-Picture of doing something caused by ADHD
-Picture of doing soemthing cased by any other co-occouring condition that I have not mentioned above
-Picture of yourself or your child taking medication or with their medications placed out in front of them
-Picture of yourself or your child tired out from ticcing
-Picture of yourself or your child with something that they use to calm their tics (singing, playing with a dog, laying under a weighted blanket, etc)
-Anything else you can think of that would say something about having TS+, these are just starter ideas!

3. Spread the Word about the photo campaign! Tell anyone you know who has TS+ to send in a picture!

Once again, submissions can be sent in to me in a message or to

The Beginning of A New Awareness Project, A Tourette's Syndrome Photography Campaign

Okay everyone! It's been a little while now since i've done an awareness project on here and today I came ac cross an article that inspired me so much that I decided I just had to take it to the Tourette's+ community. The article is about a photographer who decided to start a photography project called "Echolalia". Darn what a great name that is now taken! Guess I will have to think up another name for my version of the project. The father, Timothy started photographing his autistic son Elijah when he was 5 years old. His aim was to document the often bizarre and incomprehensible world of his son but the project developed into much more. Here is a link to an article about his project:

I want to start a similar project for Tourettes Syndrome and it's associated disorders but on a much larger scale! It might even at some point require it's own facebook page and blog. 
Sometimes a picture can speak so much more than words. A collection of pictures that express the strange world of Tourette Syndrome may just be the kind of awareness TS needs. So my challenge for you is to help me start up this small project which I hope will turn in to so much more than just a small project. What I need you guys to do is to connect with your inner photographer. Everyone can take a high quality, moving, and amazing picture with the right preparation, time, and effort. 
Here's what you can do: 
Take a picture or multiple pictures of yourself of your child that says something about the world of TS+. This picture needs to be high quality, shows effort was put into it, and probably took some preparation to put together. I will be posting a list of ideas for pictures shortly!

Wednesday, October 2, 2013

Opening Up To Others Leads to Good Things!

As a college student I often wonder, how supportive and open is the college community I live in about disability, psychological disorders, and other struggles? Do people want to talk openly about challenges or struggles they face in their life and are simply looking for an opportunity to open up, or do people want to seem "normal" or like the "typical college student"?  There is no clear cut answer and everyone probably has different feelings about the subject, but I am starting to learn more.

A major learning experience for me happened on Sunday night in the laundry room in my dorm of all places! I often feel like I want to speak openly about my Tourette's, OCD, and other disorders and often do for that matter with close friends, but to what extent do others feel that way? Well, on Sunday night I went to do some laundry and found out the opinions of two others on this subject.

I was in the laundry room doing my laundry when a girl I had met freshman year came in to do laundry as well. I had met her my freshman year in a pre-orientation college program. She asked me how I was, I asked her how she was, and we started to talk about how poorly I was treated at student health services. She immediate connected with my story and began to share her experience with student health services with me. She told me about how she was seeking psychological help from student health services and how after 40 minutes of explaining her symptoms, struggles, and the fact that she needed help, the psychologist told her that at student health they were just regular psychologists and that they didn't know how to deal with her problem. This upset me very much!! After opening up to a stranger for the first time about her mental health, the psychologist had turned her away and offered her no other options or referrals. So we started talking more and we both started opening up to each other more and found out that we both have OCD! This girl is the first person I have met on campus who has OCD like me. She was so glad to hear that I have OCD too and we started sharing experiences about what it was like having OCD as a child, how our symptoms have changed and waxed and waned over the years, and what it's been like trying to get treatment.

We were both so glad to have someone else to talk to! I also told her about my Tourette's, panic attacks, and picking and turns out she also has panic attacks and picking is one of her major OCD problems just like me! I was so glad to meet another person who understands that it is so hard to stop picking your skin no matter how much you will yourself to try to stop or how much you want to stop. This is something that not many people understand because most people have complete control over their mind and body. Not being able to stop yourself from doing something seems so foreign to so many people.

Our conversation continued on in the laundry room for about another hour! We talked about everything and one thing that we agreed on is that we do want to have opportunities to talk about our struggles and not have to hide them and pretend like everything is fine when it's really not. We also agreed that talking about our struggles does not make us OCD or in my case Tourette's. We have OCD or struggle with OCD but we are not OCD itself. She kept expressing to me how much of a relief it was to be having this conversation and how much she was enjoying it! I expressed the same to her as well.

After about an hour of our conversation, a boy walked into the laundry room to do his laundry. We continued to talk and have our conversation even though he came in because we were just so deeply into the conversation that we didn't want to stop. I would have expected the guy to come in, quickly put his clothes in the wash, and then walk out to avoid the intense conversation or to feeling awkward, but to my surprise he stayed. He stood next to his laundry while we kept talking. After about 10 minutes, when we were back on the topic of Tourette's I said "Most people think that people with Tourette's swear all the time and don't know about the other tics, but it's actually just 10% of people with Tourette's who swear". The girl responded with "Oh I've actually never heard that. I've never had that perception that people with Tourette's just swear". I've found that there are some people who really don't have that perception which always is a good thing! Anyway at this point, the guy standing next to us took the opportunity to chime in. I think that is why he stayed, because he wanted to join the conversation. He said "Sorry that I was listening in on your conversation, but yes you're right. Most people do have that perception about Tourette's, but I know it's not true." After adding that bit, he felt comfortable to join the conversation! He started sharing about his own experiences with anxiety and depression, the medication he took for them, and the therapy and struggles he has been thorough.

The conversation continued on for another hour or two, past the time when our laundry was all done, but we just wanted to stay and keep talking and sharing. It was a great bonding experience and gave me even more of a feeling that I am not alone in my struggles. In addition, the girl said to me at one point something that made me very happy! Last year in my Pre-orientation when I had told her about my Tourette's she was inspired by me. She went home and told her mom: "I met this really cool girl at college who has Tourette's and who opened up about it to me, and I just think she's a really neat person and our conversation really touched me". This made me so happy to hear! And gives me even more hope that my OCD and Tourette's is something that I have, but not something that defines me. It is a part of me, and when I open up to people about it and talk with them about what it's like to have Tourette's, it's not so much of a statement about my Tourette's but instead about my personality and who I am as a person.

I made two new great connections with people in my dorm who have similar challenges in life that I do. We all had to come to an acceptance that we may have these conditions for the rest of our lives and reach a point at which we are okay with that. We all had to seek treatment, medication, and answers. We all have to make a decision about who we choose to share our challenges with and how to do so. It is amazing how many people around you struggle with the same things that you do, even if your diagnosis is not exactly the same and even if the others you know don't have any diagnoses at all. Everyone has struggles, everyone has to make a conscious decision of if they want to hide these struggles or if they want to talk about them openly.

My ability to talk about my Tourette's and OCD openly led to me finding another girl with OCD right in my dorm who is so sweet, friendly, and is just a great person over all and also finding a guy in my dorm who struggles with Anxiety and Depression as well. It lead to a fantastic heart-to-heart conversation which left me with a great feeling and two new connections. I invited the girl from the laundry room to come study with me too and she came to study with me and three of my other friends and we had a good time. Tonight I am going to a writing club meeting because she wants me to come with her and I am excited to see her again and go to the writing club!

Opening up about yourself and the more sensitive topics that you might initially stay away from creates friendships and opportunities. When you open up you will be surprised how many people also have been waiting to open up about things in their life too. Good things come out of it! Trust me!