Last night the guy I have been going on dates with asked me if I would like to go out with him officially. I said yes smile emoticon
So now I can say that we're officially going out and that for now I am no longer single. I like so much about him. I really like how open he is with me and that he is not afraid to show me who he truly is. I also really like his personality in general and how he is a really great conversationalist. We always have something to talk about and it's always engaging and thought provoking to be around him. I like that he wants to spend time getting to know me and he really seems to like me. He gives me so many complements and tells me how cute I am, how much he likes spending time with me, and how happy he is that he met me.
Today he opened up to me about some things that were more on the personal side, and even though I was hesitant to, I opened up to him more too. I told me that I have sensory issues and OCD traits. He seemed really okay with it and didn't seem to think much of it at all. It didn't seem to affect how he feels about me and after I told him that he asked me to get ice cream later tonight and hang out more. This gives me more confidence that if I told him about my tics, it wouldn't affect how he feels about me either. There is still that nagging thought in the back of my head though, that fear that he will not accept me. I know it's just the fear that has been instilled in me by my parents that is making me feel this way. I know intellectually that he probably won't reject me because of my tics. The fear and the emotion is so real though. I think at this point I just have to take a leap of faith and plunge off the diving board. I think the sooner I make the leap, the easier it will be to be myself around him.
I'm not sure when exactly i'm going to take that leap and tell him, but I am hoping I will have the courage to do it soon, maybe even tonight when we get ice cream together. I plan on telling him in a very casual way and not making a big deal about it. I'll keep you guys updated on what I decide to do! Please wish me luck :)
Showing posts with label SPD. Show all posts
Showing posts with label SPD. Show all posts
Saturday, January 31, 2015
Thursday, December 25, 2014
Pre-Hanukkah Party Tics 2014
Well it's that time of year again that every ticcer seems to look forward to and dread at the same time, the holiday season. With all the commotion, excitement, preparation, and family, tics always seem to run rampant this time of year. Today is the day of my family's yearly Hanukkah party and my tics are getting pretty darn forceful.
After 5 months of CBIT treatment for my tics, my tics have been steadily decreeing, and i've started to get used to having less tics. However, coming home for winter break and having the holiday season has not been great for my tics. Being around my family members is very stressful for me (tic wise) and i'm sure those of you who have been following my blog for a while know why. For those of you who have not been following my blog, i'll just say this: I come from a family who values perfection and social status, and Tourette's doesn't really fit into that mold very well. Don't get me wrong, I love my family and I really do enjoy being home and spending time with them, but it's very rough on my tics and anxiety.
Being in my home environment has quickly made my tics increase. When I saw my CBIT therapist last week, she immediately noticed how much I was ticcing and told me she hadn't seen my tic this much in months. We discussed new strategies to try to decrease my tics in the home environment, such as taking "tic breaks" where I excuse myself to go to the bathroom while i'm around my family and just trying to spend less time around my family members (spending time with them in 30 min increments). These strategies seem to be helping to some extent, but my tics are still much worse than they have been over the past few months. As soon as i'm able to escape to a place where I can let my tics out, I start having so many facial tics, vocal tics, head and neck tics, and even full body tics. The other day I spent a solid period of time parked in a parking garage kicking, vocal ticcing, and jerking my body so hard that I felt my brain rattling around in my skull and got pretty dizzy.
Right now i'm up in my room while my parents prepare for the party. I've been helping prepare for the party quite a bit, but I had to escape to my room to tic and also to avoid the onion cutting. When my mom cuts onions for the Latkes for this party, my sensory processing issues go into overdrive as soon as my eyes feel any small amount of onion. It feels as if the onions are going in through my eyes and are filling my entire head with this sour and tingling feeling. The feeling will last for hours after the onions have been cut. Even though i've been avoiding the downstairs as much as I can, I've still gotten a bit of the onion feeling in my eyes. It's not nearly as bad as last year, but it's definitely still contributing to my tics.
I'm having a lot of tics right now. I hope they calm down for the party, but I kind of doubt they will. Luckily one of my very good friends will be coming to the party. Having her there will help me feel better, and like the previous years i'll be able to come upstairs with her to let out my bigger tics.
Anyway, I will probably make a post after the party is over about how it went. Happy Holidays to everyone and good luck to everyone trying to manage the holidays with tics!
After 5 months of CBIT treatment for my tics, my tics have been steadily decreeing, and i've started to get used to having less tics. However, coming home for winter break and having the holiday season has not been great for my tics. Being around my family members is very stressful for me (tic wise) and i'm sure those of you who have been following my blog for a while know why. For those of you who have not been following my blog, i'll just say this: I come from a family who values perfection and social status, and Tourette's doesn't really fit into that mold very well. Don't get me wrong, I love my family and I really do enjoy being home and spending time with them, but it's very rough on my tics and anxiety.
Being in my home environment has quickly made my tics increase. When I saw my CBIT therapist last week, she immediately noticed how much I was ticcing and told me she hadn't seen my tic this much in months. We discussed new strategies to try to decrease my tics in the home environment, such as taking "tic breaks" where I excuse myself to go to the bathroom while i'm around my family and just trying to spend less time around my family members (spending time with them in 30 min increments). These strategies seem to be helping to some extent, but my tics are still much worse than they have been over the past few months. As soon as i'm able to escape to a place where I can let my tics out, I start having so many facial tics, vocal tics, head and neck tics, and even full body tics. The other day I spent a solid period of time parked in a parking garage kicking, vocal ticcing, and jerking my body so hard that I felt my brain rattling around in my skull and got pretty dizzy.
Right now i'm up in my room while my parents prepare for the party. I've been helping prepare for the party quite a bit, but I had to escape to my room to tic and also to avoid the onion cutting. When my mom cuts onions for the Latkes for this party, my sensory processing issues go into overdrive as soon as my eyes feel any small amount of onion. It feels as if the onions are going in through my eyes and are filling my entire head with this sour and tingling feeling. The feeling will last for hours after the onions have been cut. Even though i've been avoiding the downstairs as much as I can, I've still gotten a bit of the onion feeling in my eyes. It's not nearly as bad as last year, but it's definitely still contributing to my tics.
I'm having a lot of tics right now. I hope they calm down for the party, but I kind of doubt they will. Luckily one of my very good friends will be coming to the party. Having her there will help me feel better, and like the previous years i'll be able to come upstairs with her to let out my bigger tics.
Anyway, I will probably make a post after the party is over about how it went. Happy Holidays to everyone and good luck to everyone trying to manage the holidays with tics!
Monday, October 13, 2014
Sensory Processing Disorder and The Rain
Today it was pouring rain and I forgot to put on rain boots before leaving for class. My feet and bottoms of my pants were soaking wet by the time I got to class and one of the things that sets my sensory system off the most in having one part of my body be wet. I'm fine if my whole body is wet, but if just one part is wet and the rest is dry, my sensory system goes pretty haywire.
During class my tics were very active, and my sensory system was very overwhelmed. I don't know if any of you have experienced something similar, but when my sensory system is overwhelmed by something (like in this case having wet shoes and pants), all my muscles tighten up and can't relax, and I check out mentally. When i'm overstimulated like this, its just like my body can't take any more sensory stimulation and I tune out things around. I tune out other people's voices and I stare at things for long periods of time trying not to move my eyes around too much (probably my body's way of trying to limit visual input). I wasn't able to participate in class at all because I was so checked out and after class I rushed back to my dorm.
My coordination also seems to check out. I fumbled with my key and dropped it while trying to open the door and struggled to take my pants off in a coordination fashion.
Anyone else experience anything like this because of sensory issues? Checking out mentally? Staring into space? Not being able to relax you muscles? Loosing coordination and proprioceptive abilities when overstimulated?
During class my tics were very active, and my sensory system was very overwhelmed. I don't know if any of you have experienced something similar, but when my sensory system is overwhelmed by something (like in this case having wet shoes and pants), all my muscles tighten up and can't relax, and I check out mentally. When i'm overstimulated like this, its just like my body can't take any more sensory stimulation and I tune out things around. I tune out other people's voices and I stare at things for long periods of time trying not to move my eyes around too much (probably my body's way of trying to limit visual input). I wasn't able to participate in class at all because I was so checked out and after class I rushed back to my dorm.
My coordination also seems to check out. I fumbled with my key and dropped it while trying to open the door and struggled to take my pants off in a coordination fashion.
Anyone else experience anything like this because of sensory issues? Checking out mentally? Staring into space? Not being able to relax you muscles? Loosing coordination and proprioceptive abilities when overstimulated?
Sunday, August 17, 2014
My Story! My life with Tourette Syndrome.
My Story: My life with Tourette Syndrome
(A picture of me ticcing at 3 years old)
Q:What is your name and how old are you?
A: My name is Ruthie, I'm 20 years old, and I'm a Junior in college.
A: My name is Ruthie, I'm 20 years old, and I'm a Junior in college.
Q: How long have you had Tourette Syndrome?
A: I've had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn't officially diagnosed by a neurologist until I was 17.
A: I've had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn't officially diagnosed by a neurologist until I was 17.
Q: What kinds of tics do you have?
A: I've had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.
A: I've had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.
Q: Do you have any associated conditions?
A: I have OCD, anxiety, and sensory processing issues.
A: I have OCD, anxiety, and sensory processing issues.
Q:What is life like for you living with Tourette Syndrome?
A: Living with Tourette's has it's challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette's has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette's Syndrome Association friends if I didn't have TS. Tourette's has also given me confidence. I don't mind explaining or answering questions and I love educating people about TS. In fact i'm going to be educating 200-400 medical school students about Tourette's in September! Having Tourette's is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said "people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life."
A: Living with Tourette's has it's challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette's has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette's Syndrome Association friends if I didn't have TS. Tourette's has also given me confidence. I don't mind explaining or answering questions and I love educating people about TS. In fact i'm going to be educating 200-400 medical school students about Tourette's in September! Having Tourette's is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said "people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life."
Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: As a person with Tourette's, you can do anything that anyone else can do. Ever since I was little, I was told "you can do anything you set your mind to". I took that message to heart. Even though you have tics, you should never use the word "can't". You should never let your Tourette's be a reason you can't do something. You might have to do things a little differently sometimes, but you can still succeed and do everything you want to.
A: As a person with Tourette's, you can do anything that anyone else can do. Ever since I was little, I was told "you can do anything you set your mind to". I took that message to heart. Even though you have tics, you should never use the word "can't". You should never let your Tourette's be a reason you can't do something. You might have to do things a little differently sometimes, but you can still succeed and do everything you want to.
Q:What do you think other people should know about Tourette Syndrome?
A: You should treat people with Tourette's just like you would treat anyone else. Most of the time, I feel pretty darn normal, so that's how I want you to treat me. I go to classes, hang out with my friends, go out to eat, and live in the dorms just like every other college student. I might twitch a bit more along the way, but i'm just as smart, just as capable, and just as motivated as any other person. I won't let me tics get in my way or stop me from doing the things I love. A lot of the time, I forget I have Tourette's and I just go about my day like anyone else. When people treat me any differently it surprises me. I don't feel impaired in any way. I might be different, but everyone is different in one way or another.. being different is normal.
A: You should treat people with Tourette's just like you would treat anyone else. Most of the time, I feel pretty darn normal, so that's how I want you to treat me. I go to classes, hang out with my friends, go out to eat, and live in the dorms just like every other college student. I might twitch a bit more along the way, but i'm just as smart, just as capable, and just as motivated as any other person. I won't let me tics get in my way or stop me from doing the things I love. A lot of the time, I forget I have Tourette's and I just go about my day like anyone else. When people treat me any differently it surprises me. I don't feel impaired in any way. I might be different, but everyone is different in one way or another.. being different is normal.
Q:What are your strengths and what do you like to do?
A: I am fascinated with neuroscience and am passionate about brain research. My college major is Philosophy-Neuroscience-Psychology (PNP) with a focus in Cognitive Neuroscience and I'm a research assistant in two labs at the medical school associated with my university. One of the labs I do research with is a lab that focuses on Tourette Syndrome and last year I conducted my first independent research study. My study focused on the sensory processing issues that many people with Tourette Syndrome have and I now have two research publications on this study. This year I'm going to continue to work towards more findings and publications.
A: I am fascinated with neuroscience and am passionate about brain research. My college major is Philosophy-Neuroscience-Psychology (PNP) with a focus in Cognitive Neuroscience and I'm a research assistant in two labs at the medical school associated with my university. One of the labs I do research with is a lab that focuses on Tourette Syndrome and last year I conducted my first independent research study. My study focused on the sensory processing issues that many people with Tourette Syndrome have and I now have two research publications on this study. This year I'm going to continue to work towards more findings and publications.
Q:What are your goals in life?
A: Next year I'm going to be applying to PhD programs. I would love to get my PhD in either Clinical Psychology or Cognitive Neuroscience. My goal is to one day have my own lab that focuses on Tourette Syndrome research and to make a difference in the lives of others :)
Success Story #1!! Katy's Life with Tourette's Syndrome
Success Story: Katy's Life with Tourette Syndrome
Q: What is your name and how old are you?
A: My name is Katy, I'm 17 years old (almost 18!) and I live in Wales in the UK.
Q: How long have you had Tourette Syndrome?
A:I was diagnosed with Tourettes 9 months ago after I suddenly started developing a throat clearing tic.
Q: What kinds of tics do you have?
A: My tics quickly developed to head jerking, clapping, tapping, coprolalia, copropraxia, echolalia, punching my chest, clicking my knuckles and facial grimaces. But I like to think of my signature tic as my squeak (my friends often call me guinea pig now because I squeak so much!)
Q: Do you have any associated conditions?
A: I also have anxiety, panic disorder, OCD and some issues with sensory processing.
Q: What is life like for you living with Tourette Syndrome?
A: Life has been pretty up and down with tourettes especially because I developed it so suddenly and at such a strange time in my life! I'd already become used to life as a teen without tics but then suddenly developing tourettes really turned my life upside down. People around me, like my friends and teachers had to be informed about everything and there have been times that I've felt like a burden because everyone has had to adjust to my tics.
I felt like I wanted to record with journey and show people what it's like to live with tourettes, so that's when I started my YouTube channel 'LetsTalkTics'. My channel has been such a help to me because I can talk about tourettes openly and it has helped me to come to terms with the fact that I might be living with tourettes for the rest of my life.
Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: The largest piece of advice that I can give to those who are newly diagnosed with tourettes is that being open about your tourettes is much easier than being closed about it and you'll end up gaining the best support if you talk to people about what you are going through.
Q: What is the hardest thing about living with Tourette Syndrome?
A: The hardest thing about living with tourettes for me is the swearing tics. I hate saying these horrible words in front of my friends and family and coming to terms with this has been really difficult and I'm still not very comfortable releasing my swearing tics in public.
Q: What do you think other people should know about Tourette Syndrome?
A: I think people need to know that tourettes is not just about tics. It runs so much deeper than that because tourettes can cause physical and emotional pain, tiredness and almost always comes with co-morbid conditions so it's not always just about the funny movements and sounds.
Q: What are your strengths and what do you like to do?
A: Despite having vocal tics, I absolutely love to compete in public speaking competitions. I always feel so confident and standing on the stage reminds me of my life before tourettes. But it also shows me that tourettes has not limited me in any way.
Q: .What are your goals in life?
A: I'm about to start my last year in school before moving off to university, hopefully to study psychology. I'd love to work in a rehabilitation centre or an inpatient care facility.
Saturday, January 18, 2014
A bad week of tics and telling more people about Tourette's
My tics have been really bad for the past week or so. The stress of the start of the semester, being in all new classes with all new people and having to explain my Tourette's to them all makes my tics so bad! Right now just about everything is setting them off, including the awful cold I have....perfect timing. I'm also supposed to be doing sorority recruitment which is another thing that's making my tics worse. Today though with my cold, my tics, the total over stimulation caused by the cheering and screaming and crowded rooms of recruitment, and the fact that I was feeling feverish earlier, I had to leave recruitment after about half the day and come back to my dorm. I feel like i'm missing out, but I really didn't have a choice.
Last night, I went to our last sorority recruitment workshop and our pledge family gathering. I stuck through all of that even though it proved to be too much for me. At the recruitment workshop I was ticcing so much. My grand big sister is the sweetest person ever and kept checking in with me at various points during the night when she noticed me ticcing a lot to make sure I was okay. Each time I told her I was fine, even though I was really pushing my limits by not stepping out of the room to take a sensory break and to fully let my tics out. I told my grand big and my big sister in my sorority about my Tourette's during this recruitment officially, even though they both had already suspected I had it. It was interesting because for the most part I tend to tell people about my Tourette's before they notice my tics or after they see just a few of my tics, but for my big and grandbig I had kept it from them for a long time. I have always been very afraid to tell people in my sorority for some reason. Anyway they both had seen me ticcing far to often in the past so they wouldn't have really asked about it on their own, but I thought that they should know since I was getting so close to them. I told my big when we were walking to get lunch together when I was ticcing a lot by saying in a light hearted way "Walking long distances in the cold always seems to set of my tics. Have I told you about my tics before?" I knew I hadn't told her about it obviously, but it just seemed like a light hearted way to say it and not make a big deal about it. She said "no" and so I proceeded to tell her. Then she told me she had noticed them before in psyc class when we sat next to eachother which is interesting to hear because while I of course know that my tics are very noticeable to others, people rarely say it out loud.
Then I told my grand big in a quick and joking kind of way a few days later. My grand big and big were both upset about how some things were being run in sorority recruitment so I made a joke that both my big and I could get out of recruitment if we wanted to because of our medical issues. My grand big then said "Right, Jen has Chron's disease..." and I added in "and I have Tourette's Syndrome, but I don't know if you knew that already". She responded in a similar way my big did by saying "I know. I've spent enough time around you to know." This caught me kind of off guard. I was expecting her to say that she didn't know, or maybe had noticed but didn't know what it was. I'm glad though that she had enough previous knowledge about what Tourette's was to identify my tics for what they were. Not very many people can do that! She said it in a way like it was no big deal and then we moved on. I really liked how she handled it. She seems to handle everything so well.
Anyway back to the first story, when I had pushed my body way to far, I stepped out of the room and sat outside and let my body throw its little fit. My body was jerking out of control and my vocal tics were nearly constant. I prayed no one would walk by because I didn't want anyone to see me like that. Eventually my body calmed down, but I was probably sitting out there ticcing like that for at least 15 to 30 minutes. I know that might not seem that long to you, but when your body is jerking at a constant rate for that long it's really exhausting. When I had calmed down, my friend Roxy walked by to go to the bathroom. All I was thinking was thank god she didn't come by 5 minutes earlier. When she came out she could tell something was wrong so she sat with me and talked with me for a few minutes. I told her I was just taking a little break, and she didn't ask about it further. Then she asked if I wanted to go back in and we went back in together.
I debated whether I should skip out on the pledge family dinner in order to give my body a rest, but I decided that I really didn't want to miss it and that I wanted to bond with my pledge family. So I decided that I was going to make a trade off. I would go even if it meant ticcing in front of them. I am hardly ever afraid to tic in front of people, but like I said my sorority has challenged my ability to be okay with my tics. In a social environment where it's about fitting in a lot of the time, my tics stand out so in the past I have tried my best to hold them back in front of my sorority sisters. During recruitment though because I was spending so much time with them, holding my tics back for that long really wasn't an option for my body if I was going to participate in recruitment. So I told my self what I usually tell myself in these situations which is something along the lines of "I can't help it, I have a neurological disorder, and if they don't accept me because I have a medical condition that I can't control then they aren't worth my time anyway." So I have been ticcing around them all a lot more. I have told a lot of them about my Tourette's, and I have been plesently surprised. They have all been accepting, which deep down I already knew. So I went to the pledge family gathering, I ticced a lot, none of them asked questions, the night was good, and they all made me feel like I was part of the family. It was so sweet how one of the girls in my pledge family assured me I would be one of the girls to get a little sister and that she would personally make sure of it! It was also so sweet how when I told her that I had run for activities chair and didn't get it she suggested that I might be able to take over alumnae relations chair when my grand big graduated. She told me she would personally push for me to get the position since she has some power in the sorority. Overall it was a great night even though my tics were bad, even though I had pushed my body too far, and even though I had a cold. My grand big kept checking in on me to make sure I was alright, wasn't too tired, and didn't need to go home yet. She is so sweet to look after me like that. She truly acts like my big sister and the fact that she and a lot of other people in the sorority officially know about my Tourette's doesn't change how they feel about me or act around me. I feel so glad that I opened up to them and participated in the weeks activities. It would have been so much easier to hide in my room all week, but I am so glad I participated in recruitment even though it meant my sisters would have to see my tics at a more intense level and even though it meant I would have to tell a lot of them about my Tourette's.
Last night, I went to our last sorority recruitment workshop and our pledge family gathering. I stuck through all of that even though it proved to be too much for me. At the recruitment workshop I was ticcing so much. My grand big sister is the sweetest person ever and kept checking in with me at various points during the night when she noticed me ticcing a lot to make sure I was okay. Each time I told her I was fine, even though I was really pushing my limits by not stepping out of the room to take a sensory break and to fully let my tics out. I told my grand big and my big sister in my sorority about my Tourette's during this recruitment officially, even though they both had already suspected I had it. It was interesting because for the most part I tend to tell people about my Tourette's before they notice my tics or after they see just a few of my tics, but for my big and grandbig I had kept it from them for a long time. I have always been very afraid to tell people in my sorority for some reason. Anyway they both had seen me ticcing far to often in the past so they wouldn't have really asked about it on their own, but I thought that they should know since I was getting so close to them. I told my big when we were walking to get lunch together when I was ticcing a lot by saying in a light hearted way "Walking long distances in the cold always seems to set of my tics. Have I told you about my tics before?" I knew I hadn't told her about it obviously, but it just seemed like a light hearted way to say it and not make a big deal about it. She said "no" and so I proceeded to tell her. Then she told me she had noticed them before in psyc class when we sat next to eachother which is interesting to hear because while I of course know that my tics are very noticeable to others, people rarely say it out loud.
Then I told my grand big in a quick and joking kind of way a few days later. My grand big and big were both upset about how some things were being run in sorority recruitment so I made a joke that both my big and I could get out of recruitment if we wanted to because of our medical issues. My grand big then said "Right, Jen has Chron's disease..." and I added in "and I have Tourette's Syndrome, but I don't know if you knew that already". She responded in a similar way my big did by saying "I know. I've spent enough time around you to know." This caught me kind of off guard. I was expecting her to say that she didn't know, or maybe had noticed but didn't know what it was. I'm glad though that she had enough previous knowledge about what Tourette's was to identify my tics for what they were. Not very many people can do that! She said it in a way like it was no big deal and then we moved on. I really liked how she handled it. She seems to handle everything so well.
Anyway back to the first story, when I had pushed my body way to far, I stepped out of the room and sat outside and let my body throw its little fit. My body was jerking out of control and my vocal tics were nearly constant. I prayed no one would walk by because I didn't want anyone to see me like that. Eventually my body calmed down, but I was probably sitting out there ticcing like that for at least 15 to 30 minutes. I know that might not seem that long to you, but when your body is jerking at a constant rate for that long it's really exhausting. When I had calmed down, my friend Roxy walked by to go to the bathroom. All I was thinking was thank god she didn't come by 5 minutes earlier. When she came out she could tell something was wrong so she sat with me and talked with me for a few minutes. I told her I was just taking a little break, and she didn't ask about it further. Then she asked if I wanted to go back in and we went back in together.
I debated whether I should skip out on the pledge family dinner in order to give my body a rest, but I decided that I really didn't want to miss it and that I wanted to bond with my pledge family. So I decided that I was going to make a trade off. I would go even if it meant ticcing in front of them. I am hardly ever afraid to tic in front of people, but like I said my sorority has challenged my ability to be okay with my tics. In a social environment where it's about fitting in a lot of the time, my tics stand out so in the past I have tried my best to hold them back in front of my sorority sisters. During recruitment though because I was spending so much time with them, holding my tics back for that long really wasn't an option for my body if I was going to participate in recruitment. So I told my self what I usually tell myself in these situations which is something along the lines of "I can't help it, I have a neurological disorder, and if they don't accept me because I have a medical condition that I can't control then they aren't worth my time anyway." So I have been ticcing around them all a lot more. I have told a lot of them about my Tourette's, and I have been plesently surprised. They have all been accepting, which deep down I already knew. So I went to the pledge family gathering, I ticced a lot, none of them asked questions, the night was good, and they all made me feel like I was part of the family. It was so sweet how one of the girls in my pledge family assured me I would be one of the girls to get a little sister and that she would personally make sure of it! It was also so sweet how when I told her that I had run for activities chair and didn't get it she suggested that I might be able to take over alumnae relations chair when my grand big graduated. She told me she would personally push for me to get the position since she has some power in the sorority. Overall it was a great night even though my tics were bad, even though I had pushed my body too far, and even though I had a cold. My grand big kept checking in on me to make sure I was alright, wasn't too tired, and didn't need to go home yet. She is so sweet to look after me like that. She truly acts like my big sister and the fact that she and a lot of other people in the sorority officially know about my Tourette's doesn't change how they feel about me or act around me. I feel so glad that I opened up to them and participated in the weeks activities. It would have been so much easier to hide in my room all week, but I am so glad I participated in recruitment even though it meant my sisters would have to see my tics at a more intense level and even though it meant I would have to tell a lot of them about my Tourette's.
Sunday, December 22, 2013
Family Hanukkah Party Update (Tics and Sensory Issues)
Last night was my family Hanukkah party which I posted about a tiny bit before the party started. The onions were really bothering my eyes and were really triggering my facial tics. I was hoping that the stinging feeling in my eyes would go away when the party started, but the feeling in my eyes from the onions lasted pretty much all night. I guess I have my sensory processing issues to thank for that. So pretty much the whole night I was unable to suppress most of my facial tics like I usually am. I was suppressing all of my bigger tics of course such as my vocal tics (barking, my ray gun sounding tic, gasping, and my other squeaking/puppy dog sounding tics) and my bigger motor tics like hitting my chest and my larger head jerking and arm jerking movements.
I still had lots of fun at the party though! I look forward to our Hanukkah party every year. I was so glad that my two best friends from high school could be there with me too. I was able to go up with them to my bedroom or to play with the dog in my parents room when I needed to let out some of my bigger tics. I told both of them earlier in the month that I had started taking a new medication for my tics, Clonidine, and when we went upstairs and I started letting out my bigger tics like hitting myself in the chest, they asked me how the medication was and if it was helping. I told them that I couldn't quite tell if my medication was helping yet but that I didn't think it was helping that much and that it has side effects like lightheadedness and lack of appetite. They told me though that I seemed to be ticcing a lot less than the last time we hung out. The last time we hang out though was right after I came back from camp twitch and shout when my tics were SO crazy from being around everyone at camp, so really any level of ticcing would seem more mild than that! I'm still convinced that the medication isn't doing anything besides giving me side effects and it's been a month now that i've been on it.
Anyway, at the party one of my friends said something to me that was so sweet and made my night! She said that sometimes when she is with her friends at school one of them will make a Tourette's joke and do something silly and then afterwards say "hahaha dude I have Tourette's". She told me that whenever she hears someone make a comment like this she'll immediately say back "Hey, that's not funny. My best friend has Tourette's." I think this is so sweet of her and I love that she says this. It made my night!
I mostly hung out with my two best friends during the party, but I always feel like I want to talk more with my cousin who also has Tourette's. I didn't talk too much with her last night though because there were so many people at the party and I was so busy trying to keep up with talking to my two best friends, talking with my family, and escaping to my bedroom to let out my bigger tics. The last time I texted with my cousin she told me that she is on the Clonidine patch and on the patch she is 100% tic free. Although one of her tics is punching other people and last night I saw her punch her dad. While I thought that she might have been just fooling around, I also think it may very well have been a tic because the punch looked pretty darn hard to me. It looked like there was a lot of force behind it, the kind of force that is usually behind a tic. Who knows though, I might be wrong, but it just looked like such a forceful punch, too forceful for just playing around. Maybe I will text her tonight and apologize for not talking to her much and ask her if her meds are still working for her because my meds are not working yet for me! Frustrating!
Another thing that happened during the party was that my uncle made fun of my dysgraphia which my mom was not to happy about. My mom told me to address the cards for the gifts to my cousins, and I did. I have dysgraphia though which comes along with the Tourette's. It's basically like dyslexia but for handwriting. My handwriting has always been a struggle for me and even with Occupational Therapy to try to help improve the dysgraphia and with tutoring as well my handwriting still looks like the handwriting of a young child and there's not much I can do about it even when I put all my effort into making the writing look neat. Sometimes I will also mix up my letters when writing such as write a "b" instead of a "d" and I find it very difficult to write in a straight line and not have my line of writing slant.
So when my cousin opened up the card I had addressed, my uncle said "who addressed these cards?". I said I addressed them and that I know my handwriting isn't very good. His response was "Yeah. It looks like a first grader wrote it!". I laughed and kind of went along with the joke saying that it would have looked more like a kindergartners handwriting if I hadn't put so much effort into it. My mom was apparently upset by this though and later on said to me that she didn't like how my uncle was making fun of my handwriting. I was okay with it because i'm used to people joking around about my tics and other associated disorders and mostly enjoy when it's made light of, but I guess it really did upset my mom!
Anyway, I also need to make a post about my brother and the surprising kindness he showed me last night. But I have to go to a dinner thing now with my grandpa and cousins from my moms side who are in town, so I will post about my brother later!
Also the camp twitch and shout counselor reunion is coming up shortly and i'm sooooo excited!!! I get to see some of my co-counselors who I love and other counselors from camp too!!! Sooooo excited!!!!
I still had lots of fun at the party though! I look forward to our Hanukkah party every year. I was so glad that my two best friends from high school could be there with me too. I was able to go up with them to my bedroom or to play with the dog in my parents room when I needed to let out some of my bigger tics. I told both of them earlier in the month that I had started taking a new medication for my tics, Clonidine, and when we went upstairs and I started letting out my bigger tics like hitting myself in the chest, they asked me how the medication was and if it was helping. I told them that I couldn't quite tell if my medication was helping yet but that I didn't think it was helping that much and that it has side effects like lightheadedness and lack of appetite. They told me though that I seemed to be ticcing a lot less than the last time we hung out. The last time we hang out though was right after I came back from camp twitch and shout when my tics were SO crazy from being around everyone at camp, so really any level of ticcing would seem more mild than that! I'm still convinced that the medication isn't doing anything besides giving me side effects and it's been a month now that i've been on it.
Anyway, at the party one of my friends said something to me that was so sweet and made my night! She said that sometimes when she is with her friends at school one of them will make a Tourette's joke and do something silly and then afterwards say "hahaha dude I have Tourette's". She told me that whenever she hears someone make a comment like this she'll immediately say back "Hey, that's not funny. My best friend has Tourette's." I think this is so sweet of her and I love that she says this. It made my night!
I mostly hung out with my two best friends during the party, but I always feel like I want to talk more with my cousin who also has Tourette's. I didn't talk too much with her last night though because there were so many people at the party and I was so busy trying to keep up with talking to my two best friends, talking with my family, and escaping to my bedroom to let out my bigger tics. The last time I texted with my cousin she told me that she is on the Clonidine patch and on the patch she is 100% tic free. Although one of her tics is punching other people and last night I saw her punch her dad. While I thought that she might have been just fooling around, I also think it may very well have been a tic because the punch looked pretty darn hard to me. It looked like there was a lot of force behind it, the kind of force that is usually behind a tic. Who knows though, I might be wrong, but it just looked like such a forceful punch, too forceful for just playing around. Maybe I will text her tonight and apologize for not talking to her much and ask her if her meds are still working for her because my meds are not working yet for me! Frustrating!
Another thing that happened during the party was that my uncle made fun of my dysgraphia which my mom was not to happy about. My mom told me to address the cards for the gifts to my cousins, and I did. I have dysgraphia though which comes along with the Tourette's. It's basically like dyslexia but for handwriting. My handwriting has always been a struggle for me and even with Occupational Therapy to try to help improve the dysgraphia and with tutoring as well my handwriting still looks like the handwriting of a young child and there's not much I can do about it even when I put all my effort into making the writing look neat. Sometimes I will also mix up my letters when writing such as write a "b" instead of a "d" and I find it very difficult to write in a straight line and not have my line of writing slant.
So when my cousin opened up the card I had addressed, my uncle said "who addressed these cards?". I said I addressed them and that I know my handwriting isn't very good. His response was "Yeah. It looks like a first grader wrote it!". I laughed and kind of went along with the joke saying that it would have looked more like a kindergartners handwriting if I hadn't put so much effort into it. My mom was apparently upset by this though and later on said to me that she didn't like how my uncle was making fun of my handwriting. I was okay with it because i'm used to people joking around about my tics and other associated disorders and mostly enjoy when it's made light of, but I guess it really did upset my mom!
Anyway, I also need to make a post about my brother and the surprising kindness he showed me last night. But I have to go to a dinner thing now with my grandpa and cousins from my moms side who are in town, so I will post about my brother later!
Also the camp twitch and shout counselor reunion is coming up shortly and i'm sooooo excited!!! I get to see some of my co-counselors who I love and other counselors from camp too!!! Sooooo excited!!!!
Sunday, November 3, 2013
Preparing for Rush
Today was the first recruitment workshop for my sorority where we had to practice the actual things we will be doing during rush like singing, talking to many prospective new members (fake new members this time), etc. Just from the practice I am so overstimulated sensory wise! I have a giant head ache, my face hurts, and I have that familiar "zoned out" "brain fog" feeling. I will need a lot of Advil for actual recruitment which is in January. I'm really excited to bond with everyone, but also worried about the overestimation and of course tics too. Hopefully I will be on new medication by then though, so maybe that will help.
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. http://www.youtube.com/watch?v=m9l8kQIrmvs
-Trouble making eye contact (sometimes, more when I was a kid)
-Trouble focusing, concentrating, and/or following directions (yep!)
-Selective hearing or difficulty listening (not so much for me)
-Overly sensitive to loud sounds (oh yes!)
-Talking too loud or too quiet (sometimes)
-Make inappropriate noises or repeat myself (you bet! but that's more of a TS symptom for me)
-Always smelling people, food, and objects (yes, especially when I was younger, and I will even catch myself doing it now. However, this one can also be a tic!)
-Chew on everything (I chewed on my hair when I was a kid for YEARS!)
- Resist certain textures like finger paints of play-dough (oh yes! For me the worst are chalk, velvet, and paper when my hands are wet)
-Have a hard time standing in line or staying calm during rest period (UM how can I say definition of me as a child!)
-Poor fine motor skills such as handwriting or cutting (Yes, even today my handwriting is awful and cutting is better but was very bad when I was a kid)
-Clothes look sloppy (not so much for me)
-Shoes on the wrong feet (not so much for me)
-Poor gross motor skills such as running and climbing (yes!)
-I sit with my legs in the "w" possition when working on the floor (Yes! I sat this way since I was an infant until I was in about 3rd grade)
-Walk on my tippy toes (not so much for me)
-Cant sit still (you bet!)
-Have trouble learning or making friends (yes, with a lot of things when I was a kid)
-Be very shy (yes, when I was a kid)
-trouble coping and having a lot of tantrums and melt downs (yes!)
-Afraid of a lot of actives that kids usually enjoy (definition of my life!)
-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!)
Sunday, October 20, 2013
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.
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.
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!
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.
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.
Monday, September 30, 2013
How Inadequate Health Care in College and Two Untreated Conditions Triggered a Cycle of Misery
Okay major update time! I know many of you have been concerned and worried about me so I wanted to update you all to let you know that I am now on my way to recovery. If you've been following my blog or facebook page you have probably seen many posts over the past two weeks or so that start with something like "It's 3 am and I still can't sleep", "I'm itching like crazy and I don't know why", or "I'm ticcing like crazy and it's awful and I need to find something to help it get better because it's just so bad right now that I can't function". Basically I started itching like crazy two weeks ago, my tics got really really bad, my OCD got really bad, I couldn't sleep more than a few hours per night, and I was highly sleep deprived and incredibly itchy and uncomfortable on a constant never ending basis , and in a lot of pain, and couldn't think straight for a solid two weeks.
I was on the phone with my mom crying at least 3 times a day telling her I was miserable, I went into student health services at my college about 4 or 5 times begging them for an solid answer or for some kind of relief, and got behind on my school work and was legitimately considering that the only option left was to take a medical leave of absence from college.
The sad thing is that the whole two weeks of suffering could have been avoided and would never have happened if I had had the legitimate medical care that I was denied by the student health center. All of this suffering and misery was the result of a type of common and a fairly harmless mite called Scabies which I became infected with when I visited a friend and slept on a scabies infested couch in her common room for three nights. Scabies commonly spreads through college dorms, child daycare centers, nursing homes, camps, and any other environment where there is close contact with a large number of people. It's just about as common as lice, although not many people know that, and although they cause a large amount of misery when left untreated, when treated properly they are harmless, easily eradicated from your system with the proper medication, and mostly all suffering can be avoided!
Student health services first misdiagnosed me with the scratch itch cycle, which in other words could be called "you're just itching too much for no real reason". When they did diagnose me finally with Scabies after I had been though a week or suffering already, they gave me a non-FDA approved treatment for scabies, a very low dose or antihistamines, and told me I could not go on a higher dose and that there were no other options to relieve the constant and agonizing itching which would continue for another two weeks after treatment despite the fact that I went in about 4 times begging for some kind of relief and describing to them how I was pretty much non-functional.
In addition, I developed extreme bladder pain one week after the itching started. I had a simple bladder infection which I had gotten in the past as well. I also went to Student health services to ask them to test me for a bladder infection. They took a urine sample but once they had it they refused to test me for a bladder infection because they claimed that my symptoms were more indicative of cramps even though I was not on my period and had never had cramps like this before even when I was. So on top of everything already, I was left with an untreated and quickly growing bladder infection that went untreated for a week and a half.
The constant itching, pain from the bladder infection, deterioration of my daily functionality, helplessness, hopelessness, and the prospect of looking at another two weeks like this was too much for me to handle on my own with a limited ability to think clearly or think logically at all really due to extreme sleep deprivation, constant ticcing, and severe OCD resurfacing. The extreme itching and sleep deprivation combined with with frustration and inadequate health care was the cause of the intense increase in tics, sensory processing difficulties, and OCD. And it all could have been avoided! Grrrr!
Basically on Sunday, I reached an ultimate low that I have only ever experienced one or two other times in my life. I called my mom crying, and she knew that the situation was deteriorating fast. Thank goodness for my mom's logical thinking skills when my own thinking and problem solving was not there. She told me she was coming to pick me up and that she was going to bring me to an urgent care facility.
The people at the urgent care facility were wonderful! They told me I did have Scabies, I had an extremely bad bladder infection, and told me that they could completely rid me of my itching within about thirty minutes and cure me of the Scabies for good in about 48 hours. And they were not lying! They gave me injection in my lower back that was very painful but I didn't even mind because I was willing to do anything to get some relief and completely rid me of all itching within 30 minutes. They also gave me the correct FDA approved Scabies treatment which is a cream that you rub all over your body and then in 24 hours you are no longer contagious. I did that last night so I should be Scabies free in another 12ish hours and then just to be safe I do one more treatment in 7 days to make sure all of them are gone. They also way upped my dose of anti-histamines (pretty much tripled the amount the student health services put me on) , gave me a large dose of Prednisone to take in the morning also for the itching, put me on antibotics for my bladder infection, and put me on Permidian to get rid of my bladder pain which took effect and made me pain free in 30 minutes. So with proper medical care, I was pain free, itch free, and free of all discomfort within 30 minutes of treatment.
I have been itch free, pain free, and free of all discomfit ever since and like I said before, this should all be over completely in 7 days, but I will experience very little to no discomfort at all from now on during the treatment. Thank goodness for the miracle of modern medicine! I slept thorough the entire night last night for the first time in two weeks and feel just like myself again. I'm playing a lot of catch up now in school and certainly would be in a better place if I was treated sooner, but I feel good again now and I am beyond thankful for that. My tics and OCD have also returned to their normal level as well. I am so glad about that! My tics are so much better and I don't feel that horrible feeling of not being able to get rid of the urge to tic no matter how many tics or how hard you do your tics. That feeling is just awful and I absolutely hate it.
I learned a lot though. I learned that my mom is there for me when I need her even though I sometimes think she isn't supportive of me or of my health concerns. She even helped me deal with my OCD on the phone when I was freaking out. I also learned that although things like this really exacerbate my tics and OCD, I am resilient and as soon as the trigger is taken away, things will go back to normal and I will bounce back. That was one thing my OCD kept forcing me to think, that even if I did figure out why I was so miserable and what was wrong with me that my tics would never go back to their regular level and that my OCD wouldn't either. I kept thinking that I would never get out from underneath that emotional warzone, but now I know that that's just my OCD talking and that I will get better and I will bounce back as soon as I am treated!
My mom is going to call the student health services and formally make a complaint to the person who is in charge and I am never going to student health services again. From now on I will go off campus whenever I have a medical problem. Fool me once, shame on you; fool me twice, shame on me.
I was on the phone with my mom crying at least 3 times a day telling her I was miserable, I went into student health services at my college about 4 or 5 times begging them for an solid answer or for some kind of relief, and got behind on my school work and was legitimately considering that the only option left was to take a medical leave of absence from college.
The sad thing is that the whole two weeks of suffering could have been avoided and would never have happened if I had had the legitimate medical care that I was denied by the student health center. All of this suffering and misery was the result of a type of common and a fairly harmless mite called Scabies which I became infected with when I visited a friend and slept on a scabies infested couch in her common room for three nights. Scabies commonly spreads through college dorms, child daycare centers, nursing homes, camps, and any other environment where there is close contact with a large number of people. It's just about as common as lice, although not many people know that, and although they cause a large amount of misery when left untreated, when treated properly they are harmless, easily eradicated from your system with the proper medication, and mostly all suffering can be avoided!
Student health services first misdiagnosed me with the scratch itch cycle, which in other words could be called "you're just itching too much for no real reason". When they did diagnose me finally with Scabies after I had been though a week or suffering already, they gave me a non-FDA approved treatment for scabies, a very low dose or antihistamines, and told me I could not go on a higher dose and that there were no other options to relieve the constant and agonizing itching which would continue for another two weeks after treatment despite the fact that I went in about 4 times begging for some kind of relief and describing to them how I was pretty much non-functional.
In addition, I developed extreme bladder pain one week after the itching started. I had a simple bladder infection which I had gotten in the past as well. I also went to Student health services to ask them to test me for a bladder infection. They took a urine sample but once they had it they refused to test me for a bladder infection because they claimed that my symptoms were more indicative of cramps even though I was not on my period and had never had cramps like this before even when I was. So on top of everything already, I was left with an untreated and quickly growing bladder infection that went untreated for a week and a half.
The constant itching, pain from the bladder infection, deterioration of my daily functionality, helplessness, hopelessness, and the prospect of looking at another two weeks like this was too much for me to handle on my own with a limited ability to think clearly or think logically at all really due to extreme sleep deprivation, constant ticcing, and severe OCD resurfacing. The extreme itching and sleep deprivation combined with with frustration and inadequate health care was the cause of the intense increase in tics, sensory processing difficulties, and OCD. And it all could have been avoided! Grrrr!
Basically on Sunday, I reached an ultimate low that I have only ever experienced one or two other times in my life. I called my mom crying, and she knew that the situation was deteriorating fast. Thank goodness for my mom's logical thinking skills when my own thinking and problem solving was not there. She told me she was coming to pick me up and that she was going to bring me to an urgent care facility.
The people at the urgent care facility were wonderful! They told me I did have Scabies, I had an extremely bad bladder infection, and told me that they could completely rid me of my itching within about thirty minutes and cure me of the Scabies for good in about 48 hours. And they were not lying! They gave me injection in my lower back that was very painful but I didn't even mind because I was willing to do anything to get some relief and completely rid me of all itching within 30 minutes. They also gave me the correct FDA approved Scabies treatment which is a cream that you rub all over your body and then in 24 hours you are no longer contagious. I did that last night so I should be Scabies free in another 12ish hours and then just to be safe I do one more treatment in 7 days to make sure all of them are gone. They also way upped my dose of anti-histamines (pretty much tripled the amount the student health services put me on) , gave me a large dose of Prednisone to take in the morning also for the itching, put me on antibotics for my bladder infection, and put me on Permidian to get rid of my bladder pain which took effect and made me pain free in 30 minutes. So with proper medical care, I was pain free, itch free, and free of all discomfort within 30 minutes of treatment.
I have been itch free, pain free, and free of all discomfit ever since and like I said before, this should all be over completely in 7 days, but I will experience very little to no discomfort at all from now on during the treatment. Thank goodness for the miracle of modern medicine! I slept thorough the entire night last night for the first time in two weeks and feel just like myself again. I'm playing a lot of catch up now in school and certainly would be in a better place if I was treated sooner, but I feel good again now and I am beyond thankful for that. My tics and OCD have also returned to their normal level as well. I am so glad about that! My tics are so much better and I don't feel that horrible feeling of not being able to get rid of the urge to tic no matter how many tics or how hard you do your tics. That feeling is just awful and I absolutely hate it.
I learned a lot though. I learned that my mom is there for me when I need her even though I sometimes think she isn't supportive of me or of my health concerns. She even helped me deal with my OCD on the phone when I was freaking out. I also learned that although things like this really exacerbate my tics and OCD, I am resilient and as soon as the trigger is taken away, things will go back to normal and I will bounce back. That was one thing my OCD kept forcing me to think, that even if I did figure out why I was so miserable and what was wrong with me that my tics would never go back to their regular level and that my OCD wouldn't either. I kept thinking that I would never get out from underneath that emotional warzone, but now I know that that's just my OCD talking and that I will get better and I will bounce back as soon as I am treated!
My mom is going to call the student health services and formally make a complaint to the person who is in charge and I am never going to student health services again. From now on I will go off campus whenever I have a medical problem. Fool me once, shame on you; fool me twice, shame on me.
Thursday, July 11, 2013
The Latest at the Tourette's Syndrome Research Lab
Today I had a meeting with my mentors in the Tourette's Syndrome Neuroimaging research lab that I work in as a student. They are giving me my own research project, or as they call it my "baby". I am pretty much going to run it on my own and then go to my mentors when I have questions or need any help, but this is basically going to be my project. I am honored that they trust me enough and think I am capable enough to handle this big responsibility! I am also of course a bit nervous as well, but I know I can do this! It's a study about tourette's syndrome and the co-occurring hypersensitivity to stimuli, otherwise known as sensory processing disorder. I'm not going to say much more about it other than that because of privacy issues of the lab, but I can tell you that it's a pretty neat experiment and i'm excited to start working on it!
Also while I was in the meeting I told my mentors that I was going to be out of the lab to go to camp twitch and shout to be a counselor. They were so excited about this! They told me that they thought it was great that I was going to be a counselor and one of my mentors said "the kids there will love you! they're all going to want to be just like you when they grow up!" It was so nice of him to say this to me and it made me feel really good. I'm so glad to have such wonderful and supportive mentors who of course know all about Tourette's because that's what they specialize in studying :)
Also while I was in the meeting I told my mentors that I was going to be out of the lab to go to camp twitch and shout to be a counselor. They were so excited about this! They told me that they thought it was great that I was going to be a counselor and one of my mentors said "the kids there will love you! they're all going to want to be just like you when they grow up!" It was so nice of him to say this to me and it made me feel really good. I'm so glad to have such wonderful and supportive mentors who of course know all about Tourette's because that's what they specialize in studying :)
Wednesday, July 3, 2013
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?
Tuesday, May 28, 2013
Erasing Limits and Documentary Project Go Public!
After a lot of thought and work into our project, I am proud to announce the release of www.ErasingLimits.com and The Tourette Syndrome documentary project, a collection of personal stories about Tourette Syndrome!
Website: www.ErasingLimits.com
Facebook: www.facebook.com/Erasing.Limits
What is our goal from The Tourette Syndrome Documentary Project?
Our goal from The Tourette Syndrome documentary project is to make a difference in how Tourette Syndrome and other "gifts" are viewed by society. The stories that make up this project are told from mothers, fathers, siblings, teens, and children all living with Tourette Syndrome themselves or living with someone close to them who is affected by Tourette Syndrome.
What is Erasing Limits?
Erasing Limits is a video database of empowering knowledge. Through EL, you can find high quality, informative, and inspirational videos about various disabilities, disorders, and challenges. All videos featured are videos that have been reviewed and are worth watching for anyone wanting more information, support, or encouragement in the video's respective area.
Another note about the Tourette Syndrome documentary project, this is a project that we plan to build on over time. If you sent in a video to participate in the project and you do not see your video up on the website, don't worry! The videos we have released today as part of the project are just the start and if you sent in a video for the project, I promise your video will be edited and put up as part of the project at a later date!
Also, if you wish to submit a video to participate in the growing and ongoing Tourette Syndrome documentary project, please send me a message through facebook or send me an e-mail at jspershing93@gmail.com.
Website: www.ErasingLimits.com
Facebook: www.facebook.com/Erasing.Limits
What is our goal from The Tourette Syndrome Documentary Project?
Our goal from The Tourette Syndrome documentary project is to make a difference in how Tourette Syndrome and other "gifts" are viewed by society. The stories that make up this project are told from mothers, fathers, siblings, teens, and children all living with Tourette Syndrome themselves or living with someone close to them who is affected by Tourette Syndrome.
What is Erasing Limits?
Erasing Limits is a video database of empowering knowledge. Through EL, you can find high quality, informative, and inspirational videos about various disabilities, disorders, and challenges. All videos featured are videos that have been reviewed and are worth watching for anyone wanting more information, support, or encouragement in the video's respective area.
Another note about the Tourette Syndrome documentary project, this is a project that we plan to build on over time. If you sent in a video to participate in the project and you do not see your video up on the website, don't worry! The videos we have released today as part of the project are just the start and if you sent in a video for the project, I promise your video will be edited and put up as part of the project at a later date!
Also, if you wish to submit a video to participate in the growing and ongoing Tourette Syndrome documentary project, please send me a message through facebook or send me an e-mail at jspershing93@gmail.com.
Monday, May 20, 2013
Two important conversations with my mom. Accepting TS.
So last night I had a conversation with my mom about TS that really upset both her and myself. We were not communicating well last night and both of us got angry and frustrated.
I had another conversation with my mom about TS though this morning. I think we really got somewhere this time. I was not ready to just accept that she would never accept that I have TS. So I talked to her about how I was feeling and she talked to me about how she was feeling as well.
I think we came to a solid understanding. I understand now that her frustration stems from the fact that she didn't know I had TS and its associated conditions as a child. She told me she wished she had known when I was a child that I had TS because then she could have gotten me proper therapy for my sensory processing disorder, OCD, and TS.
It's hard for her to admit to herself that I have TS because that means to her that she knows she could have done so much more for me as a child and she could have been more understanding of my behavior. When I was young she did not understand that my fear of fast movements, sports, elevators, and stairs was a result of my sensory processing disorder. She didn't understand my anxiety and OCD and tics. She thought I wanted attention and that I was being manipulative and she blames herself for thinking this instead of getting me the help I needed.
I went to occupational therapy as a child for a short period of time but she said if she had known what she knows now should could have kept me in OT longer and started me with an OT at even a younger age. She thinks she could have done more for me and she blames herself for not knowing what was going on with her child and she blames my father for not telling her that my behaviors were a result of the genetic predisposition that his family has for TS+.
I think now that we both understand this, we can both understand each other better. I now know that she really knows I have TS+ and has known that deep down for a long time. There is just a part of her that didn't want to believe it because it means that she blamed me as a child for things I could not control. I really think she is moving towards true acceptance though. She knows that I really do have TS+ because she has seen it all along. She knows that I should tell others, including my future boy friends or future husband because she knows first hand what it was like not to know that her husband had TS/OCD and that her children had a strong predisposition for TS/OCD. After this conversation I think we both understand our feelings better and we both understand each other better. We really made progress today and I am very happy about that.
I had another conversation with my mom about TS though this morning. I think we really got somewhere this time. I was not ready to just accept that she would never accept that I have TS. So I talked to her about how I was feeling and she talked to me about how she was feeling as well.
I think we came to a solid understanding. I understand now that her frustration stems from the fact that she didn't know I had TS and its associated conditions as a child. She told me she wished she had known when I was a child that I had TS because then she could have gotten me proper therapy for my sensory processing disorder, OCD, and TS.
It's hard for her to admit to herself that I have TS because that means to her that she knows she could have done so much more for me as a child and she could have been more understanding of my behavior. When I was young she did not understand that my fear of fast movements, sports, elevators, and stairs was a result of my sensory processing disorder. She didn't understand my anxiety and OCD and tics. She thought I wanted attention and that I was being manipulative and she blames herself for thinking this instead of getting me the help I needed.
I went to occupational therapy as a child for a short period of time but she said if she had known what she knows now should could have kept me in OT longer and started me with an OT at even a younger age. She thinks she could have done more for me and she blames herself for not knowing what was going on with her child and she blames my father for not telling her that my behaviors were a result of the genetic predisposition that his family has for TS+.
I think now that we both understand this, we can both understand each other better. I now know that she really knows I have TS+ and has known that deep down for a long time. There is just a part of her that didn't want to believe it because it means that she blamed me as a child for things I could not control. I really think she is moving towards true acceptance though. She knows that I really do have TS+ because she has seen it all along. She knows that I should tell others, including my future boy friends or future husband because she knows first hand what it was like not to know that her husband had TS/OCD and that her children had a strong predisposition for TS/OCD. After this conversation I think we both understand our feelings better and we both understand each other better. We really made progress today and I am very happy about that.
Wednesday, May 15, 2013
Full TS Documentary from Last Year In One Video
Hey guys! I know many of you saw and/or participated in the first TS documentary that I produced last year. For those of you who missed it or if you just want to watch it again, I have compiled the whole 50 minute documentary together in one video with the help of vimeo! No more dealing with having to switch from part 1, to part 2, to part 3, etc. So I would highly suggest watching it or sharing it if you haven't already! The next TS documentary project is going to be even better than this one, but of course the first one is still a very good watch! It's called "Out of Our Control: The Chronicled Lives of Tourette's Syndrome". Just click on the link to view it :) https://vimeo.com/66215926
Monday, May 13, 2013
News about the Tourette's Syndrome Documentary Project and More
Good and major news everyone! Logan and I will be releasing the long awaited Tourette's Syndrome Documentary Project around the end of this month in honor of Tourette's Syndrome awareness month! Along with the documentary project, Logan and I will also be releasing our website that the documentary project will be featured on. Basically the website is going to be a video database where people can find video clips and full length documentaries that are about disabilities, disorders, and other life challenges. Not only will these videos be providing knowledge, but they will also be empowering and the source of great support. These videos will let people with all sorts of different challenges that they are NOT alone. Of course since Logan and I both have TS, Tourette's Syndrome will be a special focus of many sections of the website so there will be many video resources for those of you in this group! I hope you all are as excited as I am! I can't wait to get all of your feedback on this project that Logan and I have spent so much time and effort to create for you guys. More information to come later this month
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