OCD in the science lab

Yesterday I had to leave class because of my OCD for the first time in a long long time. My Imaging sciences professor didn't tell us ahead of time that we were going to take a tour of a wet lab on campus. I thought I would be okay if I just didn't touch anything and kept my distance, but my OCD went crazy when we got to the lab and there were signs everywhere saying "toxic hazardous chemicals use

d here". I stuck with it though even after this because I thought well everyone else is here, I'll be fine if I just don't touch anything. I still started planning an excuse that would get me out of there if need be. It was just too much for me when the lab director opened up a jar of fruit flies that started flying everywhere. My OCD jumped into action even more, making me think of how the flies could land on these toxic chemicals then come over and land on me. So I used my excuse, told the teacher I had a migraine, and I got out of that lab as fast as I could. I'm a little upset that I had to leave class, but mostly I'm just relieved that I got out of there before a fly landed on me. That would have most likely resulted in hours of ritualizing.....Since my summer intensive treatment I have not needed to ritualize to this extent and I am glad I avoided having too. I think it's safe to say I will not be working in a wet lab in my career.

A Very Special Call From A Very Special Friend

Last weekend, one of my best friends from high school gave me a call. She is the friend who I have referred to as Tie Dye in previous posts. This call really made my day and made me appreciate how much friendships can truly mean even more. She asked me about my day (because she always genuinely cares) and asked me about my plans for the weekend. I asked her about her day and her plans for the weekend as well. She wanted to make sure I was still enjoying college and having a fun time and I told her all about how I was still loving college! We started talking about big lecture classes and then the part that really got to me and made me so grateful to have friends like her though was the part of the conversation that went something mostly like this:

Tie Dye: "So this might be a little bit of a sensitive topic to talk about if you're next to people, but how are your big lecture classes, with your tics I mean?"
Me: "They're pretty good actually. Not as bad as I thought they would be. The people in front of me sometimes turn around and look at me because they're probably wondering 'what is she doing?' but then they pretty much ignore me and I ignore them. Thanks for asking."
Tie Dye: "That's really great. Oh and how are your friends about it? Are they understanding?"
Me: Oh yeah, they're great about it.
Tie Dye: "Good because if they weren't, they'd have to answer to me!"

Then Tie Dye started talking about how her friend at college started volunteering with young kids who have Tourette's and how she wants to go with her sometime to volunteer with them too.

Awww, the whole conversation made me really really happy. Tie Dye and I have been friends since 6th grade, and she knows me so well. She is comfortable with my TS and I love when she asks me about it because I know she really cares and wants to know how I am. She understands that TS is a part of my life that effects me, she understands that sometimes people aren't as understanding as they could be, and she understands that saying something like "Good because if you're friends weren't understanding and supportive, they'd have to answer to me" would make me feel safe and accepted by her which would make my day even though she is on the opposite side of the country.

The interesting thing though is that although the conversation made my day and let me know that no matter what I have a friend who understands and accepts my Tourette's, it made me kind of upset at the same time. I realized how much I missed her and how things would never be the same as they were in high school. It also made me think about how none of my friends at college have yet to reach the stage of comfort about my Tourette's that they would be willing to bring it up themselves and ask me how I was with my tics. I know relationship building takes time, but I'm not a very patient person sometimes about these kinds of things. I want my friends at college to have complete comfort and understand about my Tourette's like my friends in high school did. I know however, that this kind of comfort, understand, and habituation takes time. I'll get there with my friends; I just have to wait.  That night though, I really didn't feel like waiting. I pretty much just went back to my room and felt sorry for myself.

The next morning when I woke up though, everything was back to normal and I felt better. In the long term the conversation helped me realize that with time my new friends at college will reach the level of understanding, support, and comfort with my Tourette's that my friends in high school had, it will just take time.

Instructions/Questions Sheet for New Documentary "Tourette's and The Classroom"

Filming Instructions

As you review this instructions sheet, find the section/sections of guidelines and questions that apply to you. You will find the guidelines for filming the video directly below, and you will find the questions to answer in your video in the second part of the instructions sheet. Be sure to review all filming guidelines before beginning to film. After this, review the questions in the section/sections that apply to you. You do not have to answer all of the questions in the section that applies to you, so if there is a question that you feel uncomfortable answering, you can skip over it and move on to the next question. Please expand on your questions as much as possible—the more you talk the more of the documentary you can be in. Overall, just be yourself while answering the questions and don’t feel like you have to stick to the questions like a script. The questions are provided for you to serve as a springboard, so go in whichever direction the questions and your own emotions take you. Speak with emotion as much as possible and above all be yourself. Please limit the length of the video to about 7 minutes for each set of guidelines. The reason for this is that videos that are longer than 7 minutes are hard to transfer and edit, however it is perfectly fine (and in most cases encouraged) for you to send it multiple videos that are around 7 minutes in order to answer all the questions or talk about everything that you wish to talk about.

Guidelines for filming at home:

• If you plan to film a video for the documentary at home please follow these guidelines:
•  When filming, use your highest quality video camera or digital camera that can take video, if the only way you can film is with a cell phone then make sure to turn your cell phone sideways when filming 
• If you are a parent filming your child, a parent filming others, or a person with TS filming others either set the camera down on a sturdy structure when filming others or hold the camera very still so that there is no movement of the video camera
• Set the video camera down on a sturdy structure when filming yourself, do not hold the video camera and try to aim it at your face
• When filming, sit on a couch or at your kitchen table, don’t just sit on a chair in your room next to your computer
• Try to make sure the area that is seen on camera is cleanly and neat
• If possible, try to film somewhere in your house that is colorful and interesting
•  While you are filming, make sure there is no background noise such as music playing, people talking, people vacuuming, people mowing the lawn, or other background noises occurring that could be detected by the video camera (obviously don’t worry about vocal tics or any other noise made by ticcing though)

Guidelines for filming in a classroom:

If you plan to film a video in the classroom in addition to your video/videos in which you talk about TS please follow these guidelines:

• ·         Do not film with an iPhone or any type of cellular device
• ·         When filming, use your highest quality video camera or digital camera that can take video
• ·         Try to film in a classroom with minimal background noise
• ·         Either set the camera down on a sturdy structure when filming others or hold the camera very still so that there is no movement of the video camera
• ·         While you are filming, make sure there is no background noise such as music playing, people talking, people vacuuming, people mowing the lawn, or other background noises occurring that could be detected by the video camera (obviously don’t worry about vocal tics or any other noise made by ticcing though)
• ·         Have other people in the background

Guidelines for filming outside:

If you plan to film a video outside, please follow these guidelines:

• ·          Do not film with an iphone
• ·          When filming, use your highest quality video camera or digital camera that can take video
• ·          If you are a parent filming your child, a parent filming others, or a person with TS filming others   either set the camera down on a sturdy structure when filming others or hold the camera very still so that there is no movement of the video camera
• ·          Set the video camera down on a sturdy structure when filming yourself, do not hold the video camera and try to aim it at your face
• ·          When filming outside, try to film in an area with an interesting background (examples: an area with trees in the background, an area with bushes or greenery in the background)
• ·          Do not film in an area such as a parking lot, an ally, or in front of busy restaurants or stores
• ·          Try to film in an isolated area as much as possible in order to reduce background noise (for example don’t film next to a busy street or next to someone mowing their lawn)

Self-Filming Questions:

Self-Filming Questions for Parents of children with TS:

• ·          Say your name, where you are from (city, state, and country), and that you are a parent of a child with Tourette’s Syndrome
• ·          What was the first things you noticed that made you think something was wrong?
• ·          When was your child diagnosed with TS? And how did you feel when you got the diagnosis?
• ·          How old is your child and what grade is he/she in?
• ·          What were some of the challenges your child faced initially with the new diagnosis?
• ·          Does your child have a 504 or IEP? (optional)
• ·          What are some challenges that your child had to face in school and what was in like for you as a parent?
• ·          Does your child have associated conditions? How has your child’s associated conditions effected them in school?
• ·          What are some successes your child has had in school?
• ·          What do you think your child’s future will be like?
• ·           Have your child’s teachers been supportive and understanding of your child’s condition? Expand on this.
• ·          Have your child’s classmates been supportive and understanding?
• ·          Have you been happy with the way your child’s school in general has dealt with your child’s conditions?
• ·          How do you stay positive when your child is having a difficult time in school or in general with his/her TS?
• ·          How do you deal with negative reactions?
• ·          What advice would you give to parents who recently received a TS diagnosis for their child? What advice would you give them for dealing with TS in school?
• ·          Tell a story of a time when you were unhappy with someone’s reaction to your child’s TS in school or when you were particularly happy with someone’s reaction to your child’s TS in school.
• ·          Tell a story of when someone had a reaction that you did not expect.
• ·          Tell a story about a time when your child’s TS caused a particularly funny, interesting, upsetting, or surprising situation.
• ·          Anything else you want to tell people about what it’s like to have a child with TS?

Self-Filming Questions for Parents to ask their Children who have TS

(or for the kids to answer if they are filming themselves):

• ·          Have your child say their name, how old they are, what grade they are in, where they are from, and that they have Tourette’s Syndrome
• ·          What was it like for you when you were first diagnosed with TS?
• ·          What are some of your tics?
• ·          What does a tic feel like to you?
• ·          Do you have any associated conditions? If so, what are they?
• ·          How do your associated conditions affect you?
• ·          Do you hold your tics back in school at all?
• ·          Do you tic in class?
• ·          If you hold your tics back at school, do you have to let them all out when you get back home? What is this like for you?
• ·          Has anyone at school ever bullied you because of your tics, associated conditions, or just in general?
• ·          Are your teachers understanding and supportive about your tics and/or your associated conditions?
• ·          Are your friends at school okay with your tics? What do they think about the fact that you have Tourette’s?
• ·          What is the hardest part of having Tourette’s?
• ·          What is the best part?
• ·          When do you tic the most? The least?
• ·          What would you say to another kid your age who had just been diagnosed with TS? Would you give them any advice? What would this advice be?
• ·          What would you want other people who don’t have TS to know about having TS?
• ·          Anything else you want to tell people about what it’s like to have TS?
• 
  

Self-Filming Questions for Teens with TS:

·        Say your name, age, grade,  where you are from (city, state, and country), and that you have Tourette’s Syndrome

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

·        What are some of your tics?

·        What does a tic feel like to you?

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

·        How do your associated conditions affect you?

·        Do you hold your tics back in school at all?

·        Do you tic in class?

·        If you hold your tics back at school, do you have to let them all out when you get back home? What is this like for you?

·        Has anyone at school ever bullied you because of your tics, associated conditions, or just in general?

·        Are your teachers understanding and supportive about your tics and/or your associated conditions?

·        Are your friends at school okay with your tics? What do they think about the fact that you have Tourette’s?

·        How do your classmates in school and in your classes react to your TS?

·        Are your classmates supportive and understanding or not so much?

·        What is the hardest part of having Tourette’s?

·        What is the best part?

·        When do you tic the most? The least?

·        When has the school environment been most supportive of your TS? Elementary school? Middle school? High school?

·        Has there ever been a time when you were disciplined in school because of your TS either before or after you were diagnosed? 

·        Do you have a 504/IEP?

·        What kinds of accommodations do you get in school?

·        Are your teachers supportive about implementing these accommodations and allowing you to use them?

·        What has been the most helpful accommodation for you in school? 

·        Is there an accommodation that you wish you could have now or wish you could have had in the past?

·        What have been some of your successes in school?

·        What have been some of your challenges in school?

·        Who was the best teacher you had and why?

·        Who was the worst teacher you had and why?

·        What would you say to another teen or child who had been recently diagnosed with TS? What advice would you give them in general and about school?

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

·        How do you deal with negative reactions?

·        Tell a story of a time when you were unhappy with someone’s reaction to your TS in school or when you were particularly happy with someone’s reaction to your TS in school.

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

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

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

·        Anything else you want to say about having TS?

Self-Filming Questions for College Students:

• ·          Say your name, where you are from (city, state, and country), and that you have   Tourette’s Syndrome
• ·          What was it like for you when you were first diagnosed with TS?
• ·          What are some of your tics?
• ·          What does a tic feel like to you?
• ·          Do you have any associated conditions? If so, what are they?
• ·          How do your associated conditions affect you?
• ·          What was school before college like for you when you were a kid (elementary school, middle school, high school)?
• ·          When was TS the most difficult for you in school before college and now in college?
• ·          When was it the least difficult before college and now in college?
• ·          Did you hold your tics back in school before college? How about now in college?
• ·          Did you tic in class before college? How about now in college?
• ·          How do you stay positive when you are having a difficult time in school or in general with your TS?
• ·          How do you deal with negative reactions?
• ·          How did your attitude change about your TS in school from elementary school to high school and college?
• ·          Were you ever bullied in school because of your TS or associated conditions before college?
• ·          Were your teachers understanding and supportive about your tics and/or your associated conditions before college? Are they now in college?
• ·          Who was the best teacher you had and why?
• ·          Who was the worst teacher you had and why?
• ·          Were your friends at school okay with your tics before college? What do they think about the fact that you have Tourette’s before college? How about now in college?
• ·          How did your classmates in school and in your classes react to your TS before college? How about now in college?
• ·          Were your classmates supportive and understanding or not so much before college? In college?
• ·          What is the hardest part of having Tourette’s?
• ·          What is the best part?
• ·          When do you tic the most? The least?
• ·          When has the school environment been most supportive of your TS? Elementary school? Middle school? High school? College?
• ·          Has there ever been a time when you were disciplined in school because of your TS either before or after you were diagnosed? 
• ·          Did you have a 504 or an IEP before college? Do you get accommodations in college?
• ·          What kinds of accommodations did you get in school before college? How about now?
• ·          Were your teachers supportive about implementing these accommodations and allowing you to use them before college? How about now?
• ·          What was the most helpful accommodation for you in school before college? What is the most helpful one for you now?
• ·          Was there an accommodation that you wish you could have had in school?
• ·          What is it like for you having larger lecture classes now? How does your TS affect you in this situation?
• ·          What is dorm life like for you? Does your TS or do your associated conditions effect dorm life?
• ·          How has it been making all new friends in college?
• ·          Did you choose to explain your TS to your new friends/new professors in college?
• ·          How have they been about it?
• ·          What were some of your successes in school? And now in college?
• ·          What were some of your challenges in school? And now in college?
• ·          Was college significantly different for you than school before college?
• ·          What is your major?
• ·          What are your goals for the future?
• ·          What advice would you give to someone who was just diagnosed with TS? What advice would you give them particularly about school?
• ·          Tell a story of a time when you were unhappy with someone’s reaction to your TS in school or when you were particularly happy with someone’s reaction to your TS in school.
• ·          Tell a story of when someone had a reaction that you did not expect.
• ·          Tell a story about a time when your TS caused a particularly funny, interesting, upsetting, or surprising situation.
• ·          What would you want other people who don’t have TS to know about having TS?
• ·          Anything else you want to say about having TS?
•  

Self-Filming Questions for Adults with TS:

• ·          Say your name, where you are from (city, state, and country), and that you have Tourette’s Syndrome
• ·          What was it like for you when you were first diagnosed with TS?
• ·          What are some of your tics?
• ·          What does a tic feel like to you?
• ·          Do you have any associated conditions? If so, what are they?
• ·          How do your associated conditions affect you?
• ·          How do you stay positive when you are having a difficult time in school or in general with your TS?
• ·          How do you deal with negative reactions?
• ·          What was school like for you when you were a kid (elementary school, middle school, high school, college)? 
• ·          When was TS the most difficult for you in school?
• ·          When was it the least difficult?
• ·          Did you hold your tics back in school?
• ·          Did you tic in class?
• ·          How did your attitude change about your TS in school from elementary school to high school and college?
• ·          Were you ever bullied in school because of your TS or associated conditions?
• ·          Were your teachers understanding and supportive about your tics and/or your associated conditions?
• ·          Who was the best teacher you had and why?
• ·          Who was the worst teacher you had and why?
• ·          Were your friends at school okay with your tics? What do they think about the fact that you have Tourette’s?
• ·          How did your classmates in school and in your classes react to your TS?
• ·          Were your classmates supportive and understanding or not so much?
• ·          What is the hardest part of having Tourette’s?
• ·          What is the best part?
• ·          When do you tic the most? The least?
• ·          When has the school environment been most supportive of your TS? Elementary school? Middle school? High school?
• ·          Has there ever been a time when you were disciplined in school because of your TS either before or after you were diagnosed? 
• ·          Did you have a 504 or an IEP?
• ·          What kinds of accommodations did you get in school?
• ·          Were your teachers supportive about implementing these accommodations and allowing you to use them?
• ·          What was the most helpful accommodation for you in school? 
• ·          Was there an accommodation that you wish you could have had in school?
• ·          What were some of your successes in school?
• ·          What were some of your challenges in school?
• ·          Was college significantly different for you than school before college?
• ·          What is your profession/job now?
• ·          Are you married? Do you have any kids? Do any of your kids have TS or associated conditions?
• ·          What advice would you give to someone who was just diagnosed with TS? What advice would you give them about school?
• ·          Tell a story of a time when you were unhappy with someone’s reaction to your TS in school or when you were particularly happy with someone’s reaction to your TS in school.
• ·          Tell a story of when someone had a reaction that you did not expect.
• ·          Tell a story about a time when your TS caused a particularly funny, interesting, upsetting, or surprising situation.
• ·          What would you want other people who don’t have TS to know about having TS?
• ·          Anything else you want to say about having TS?

Self-Filming Questions for those who home school:

• ·          Say your name, where you are from (city, state, and country), and that your child has Tourette’s
• ·          Use the questions from “Self-Filming Self-Filming Questions for Parents to ask their Children who have TS (or for the kids to answer if they are filming themselves) and adapt these questions to fit your child’s situation and to fit homeschooling
• ·          When was your child diagnosed with TS? And how did you feel when you got the diagnosis?
• ·          How old is your child and what grade is he/she in?
• ·          What were some of the challenges your child faced initially with the new diagnosis?
• ·          How do you stay positive when you are having a difficult time in school or in general with your TS?
• ·          How do you deal with negative reactions?
• ·          Why did you choose to homeschool your child?
• ·          Was your child ever in regular school? What was it like for him/her?
• ·          What is it like homeschooling a child who has TS?
• ·          What is it like for your child to do group activates like sports, religious school, or play dates?
• ·          How do you think homeschooling has benefited your child?
• ·          Would you suggest homeschooling for others?
• ·          Do you plan to homeschool your child permanently until college or do you plan to move your child into the regular school setting eventually?
• ·          What do you think/hope your child’s future will be like?
• ·          What advice would you give to a parent who had just received a diagnosis of TS for their child?
• ·          Tell a story of a time when you were unhappy with someone’s reaction to your child’s TS in school or when you were particularly happy with someone’s reaction to your child’s TS in school.
• ·          Tell a story of when someone had a reaction that you did not expect.
• ·          Tell a story about a time when your child’s TS caused a particularly funny, interesting, upsetting, or surprising situation.
• ·          What would you want other people who don’t have TS to know about having TS?
• ·          Anything else you want to say about having TS?

Questions for filming others:

Questions for filming your teachers/professors:

• ·          What was your perception of Tourette’s before you had me as a student?
• ·          Have you had students in the past who have had Tourette’s?
• ·          What is it like having a student with TS in your class?
• ·          What would you tell other teachers about having a student in the class about TS? What advice would you give them if they were going to have a student with TS in their class and had never experienced this before?

Questions for filming your child’s teachers:

• ·          What was your perception of Tourette’s before you had a child with TS as a student?
• ·          Have you had students in the past who have had Tourette’s?
• ·          What is it like having a student with TS in your class?
• ·          What would you tell other teachers about having a student in the class about TS? What advice would you give them if they were going to have a student with TS in their class and had never experienced this before?

Questions for filming your parents:

• ·          What was your perception of TS before you had a child with TS?
• ·          What was it like/how did you feel/how did it affect you when I was diagnosed?
• ·          What was the first thing/ the first things you noticed that was out of the ordinary with me?
• ·          What do you think my experience in school is like as a result of my TS?
• ·          Is there any time you can think of specifically when my TS made it more difficult for me in school?
• ·          What is it like being in public with me when I am ticcing?

Questions for filming siblings or other family members:

• ·          What was your perception of TS before you knew me?
• ·          What is it like having a sibling/family member with TS?
• ·          What was it like when you were younger and maybe didn’t understand it as much?
• ·          Do you think my experience in school is any different than your experience in school as a result of my TS?
• ·          What is it like being in public with me when I am ticcing?

Questions for filming your friends:

• ·          What was your perception of TS before you knew me?
• ·          What is it like having a friend with TS?
• ·          Do you notice my tics a lot still or have you gotten used to them?
• ·          What would want other people to know about what it’s like to have a friend with TS?
• ·          Tell a story about a time when TS caused a particularly funny, interesting, upsetting, or surprising situation for us.
• ·          What is it like being in public with me when I am ticcing?

Video submission instructions:

1.       Upload your final video/videos to YouTube as unlisted videos.

2.       Contact both of us by email or by facebook with your full name and the link to the unlisted video.

3.       Subject of email must be “TS Documentary”

If you have any questions, feel free to contact Logan Kurtz via email at logan@definitepossibilities.com or phone (818) 473-9065. Check out Logan’s Facebook page “Help Spread the word about Tourette's Syndrome (https://www.facebook.com/Help.Spread.the.word.TS).

You can also contact Ruthie P. at jspershing93@gmail.com or though the Facebook page “A Little Bit Different Tourette’s Syndrome (http://www.facebook.com/pages/A-Little-Bit-Different-Tourettes-Syndrome/164459540340080).