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Tuesday, August 6, 2013
For Millie and Her Family :)
A new awareness picture I made for Millie and her family. I just love making these pictures and then seeing the comments and seeing the shares! I made this one this morning and already it has been shared 40 times and liked 68 times! I love seeing the awareness spreading! Never forget that Tourette's Syndrome awareness matters, especially for kids like Millie :)
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Operation "Get My Mom to Accept My Tourette's"
Well I haven't really written about this yet, partly because I have been very busy and partly because I didn't want to jinx it, but I think I am ready to write at least some of it out now.
As those of you who have been members of my Facebook page and blog for a while know, I wasn't diagnosed with Tourette's until I was 16. They thought of my tics as habits resulting from my anxiety and they thought that if they just told me to stop enough times then they could break these habits. I think what it comes down to is that in the 90's (which was when I first started exhibiting tics) even doctors really didn't know much about Tourette's and neither did the general public (which includes my parents). Since I was diagnosed with Sensory processing disorder and dysgraphia in 3rd grade, Generalized anxiety disorder in 4th or 5th grade, and OCD when I was 15, the tics were just lumped in as habits or fidgets resulting from my anxiety. No one really ever thought of the possibility of Tourette's because in my parents' minds, Tourette's was only something that caused people to shout out swear words. Of course they now know that only 10% of people with Tourette's have swearing tics and that in reality most people have tics like mine, but they just didn't know that before my diagnosis.
When I was diagnosed, the word Tourette's scared them. They had only heard of Tourette's in the context of people who shouted out swear words all the time and that definition of it by no means fit their daughter. Initially they just couldn't get that stereotype and they thought since they couldn't get over the stereotype, other people wouldn't be able to either. So in summary, they told me that telling others that I have Tourette's would close doors for me and that I should keep my diagnosis to myself. My parents also hoped that the neurologist was wrong and somehow had misdiagnosed me. They still hoped that very soon my tics would go away.
When it was clear my tics and other associated conditions were not going to go away my dad went on one mental path and my mom went on another. My dad I think moved away from the polar extreme of thinking the Tourette's diagnosis was going to ruin my life if anyone found out to a more neutral way of thinking. He began to accept that everyone has challenges and that this was just my challenge. He began to get over the stereotype of Tourette's and bring this new perception of what Tourette's is into his mind. My dad and I don't talk a whole lot or really at all about Tourette's or my other associated conditions, but I we did have one good conversation about it a little while back where he told me these things and gave me an idea of where he was mentally in terms of accepting the fact that I do have Tourette's. My dad certainly reached this level of acceptance before my mom did.
Let's just say that my mom's path to acceptance was a whole lot more complicated. I could probably write a whole essay on my mom's path to acceptance which was mainly a long road of denial and guilt. Instead though I am going to give you guys a summary. Basically, when it was clear that my tics and other associated conditions were not going to go away, my mom went into pretty strong denial. She didn't want her daughter to have anything wrong with her. She also felt a lot of guilt because if in fact I did have Tourette's (which I do) and had tics as a kid (which I did, a lot!) then she had in reality all this time been telling me to stop doing something and in essence criticized and punished me for that I couldn't control and wasn't my fault. It was easier for her to deny the fact that I have Tourette's all together than to face her guilt. I understand why she was in denial about my Tourette's, but that doesn't necessarily make it right. Before camp though I kind of came to a realization that my mom would never fully accept the fact that I have Tourette's, would never spend the time she needed to to really understand it, and would never be able to put herself in my shoes even for just a few seconds.
When I came back from camp I still kind of thought there would be no way that she would ever accept my Tourette's or my involvement with the camp and the TSA i'm a part of. After camp though, I decided that even if she had a hard time accepting my TS, I wasn't going to be afraid to talk about it anymore around her or anyone else really. I wasn't going to be ashamed of the fact I have Tourette's because it's really nothing you should be ashamed or embarrassed of. I already knew this before camp, but knowing something intellectually is very different from feeling something inside yourself and believing it. I now feel and believe inside myself that Tourette's is nothing you should be ashamed of or shy away from talking about.
So when I came home, I didn't shy away from talking about camp or Tourette's with my friends or even my family. I talked about camp and my experiences there from my heart without hesitation. My new confidence about it I think is one of the things that helped my mom start to come away from her state of denial. I can safely say that at least for now, my mom is no longer in denial, is no longer afraid to talk with me about Tourette's, and is no longer hesitant about me being involved with camp twitch and shout and the TSA group. You guys have no idea how huge this is for her! Or maybe you do know, especially those of you who have gone though something similar with a parent, retaliative, or friend.
I have been able to talk with my mom about camp, about the TSA group and my new leadership position with the group (the teen/young adult group I have been put in charge of), and about Tourette's in general. Before, almost every time I tried to talk with her about Tourette's she would get angry, go into a spinning denial, and we would both leave the conversation upset and more often than not, in tears. So for a while of course I just gave up on talking with her about anything related to Tourette's or OCD. Now however, she is in a much better place about it. I think a few things helped her:
1.) That going to camp made me so happy and helped me to step out of my comfort zone and try things I have never had the confidence to do before
2.) The fact that camp exists and the fact that there were so many campers and counselors there with Tourette's. I think this helped her realize that Tourette's is definitely a real thing that real people in real life deal with and it's not just me.
3.) The fact that some people at camp have a very mild case and some people at camp have a more severe case. Hearing about the spectrum of tics helped her I think start to realize and take to heart the fact that that not everyone with TS has a severe case and just because I have Tourette's doesn't mean that everyone will always think I have a severe case or cursing tics. This has been a major fear of hers.
4.) My own new found confidence or talking about it and about explaining it!
The real test for her was when I showed her a new shirt that I got at camp. On the front it says "different is the new normal" and on the back it says "tourette's tics me off" or maybe on the back it says "tourette's Syndrome awareness". I can't really remember though! Anyway it says tourette's on the back and that's what matters for this story right now. So the shirt came in the mail because they didn't have any smalls left at camp. When it came in the mail I took the shirt out and I showed it to my mom with confidence. I showed her the front and the back and asked her what she thought about it. And drum roll please......she said she loved it!! I guarantee you before camp she would have said something like "it's cute, but you better not wear that in public because it says tourette's on it". Then I even decided the next day to wear it out and about and my mom didn't say a word. I know she knew I was wearing it but she made no objection to me wearing the shirt out and about in public. Now that is the kind of progress I have been waiting to see in her for a very very long time now. Operation "get mom to accept my Tourette's" = complete!
Now she's not perfect, and I wouldn't expect her to be because you really can't move from straight denial to perfect acceptance and support in one week, but where she is right now is good enough for me! If she stays where she is right now mentally about the whole thing I would be perfectly happy with that!
As those of you who have been members of my Facebook page and blog for a while know, I wasn't diagnosed with Tourette's until I was 16. They thought of my tics as habits resulting from my anxiety and they thought that if they just told me to stop enough times then they could break these habits. I think what it comes down to is that in the 90's (which was when I first started exhibiting tics) even doctors really didn't know much about Tourette's and neither did the general public (which includes my parents). Since I was diagnosed with Sensory processing disorder and dysgraphia in 3rd grade, Generalized anxiety disorder in 4th or 5th grade, and OCD when I was 15, the tics were just lumped in as habits or fidgets resulting from my anxiety. No one really ever thought of the possibility of Tourette's because in my parents' minds, Tourette's was only something that caused people to shout out swear words. Of course they now know that only 10% of people with Tourette's have swearing tics and that in reality most people have tics like mine, but they just didn't know that before my diagnosis.
When I was diagnosed, the word Tourette's scared them. They had only heard of Tourette's in the context of people who shouted out swear words all the time and that definition of it by no means fit their daughter. Initially they just couldn't get that stereotype and they thought since they couldn't get over the stereotype, other people wouldn't be able to either. So in summary, they told me that telling others that I have Tourette's would close doors for me and that I should keep my diagnosis to myself. My parents also hoped that the neurologist was wrong and somehow had misdiagnosed me. They still hoped that very soon my tics would go away.
When it was clear my tics and other associated conditions were not going to go away my dad went on one mental path and my mom went on another. My dad I think moved away from the polar extreme of thinking the Tourette's diagnosis was going to ruin my life if anyone found out to a more neutral way of thinking. He began to accept that everyone has challenges and that this was just my challenge. He began to get over the stereotype of Tourette's and bring this new perception of what Tourette's is into his mind. My dad and I don't talk a whole lot or really at all about Tourette's or my other associated conditions, but I we did have one good conversation about it a little while back where he told me these things and gave me an idea of where he was mentally in terms of accepting the fact that I do have Tourette's. My dad certainly reached this level of acceptance before my mom did.
Let's just say that my mom's path to acceptance was a whole lot more complicated. I could probably write a whole essay on my mom's path to acceptance which was mainly a long road of denial and guilt. Instead though I am going to give you guys a summary. Basically, when it was clear that my tics and other associated conditions were not going to go away, my mom went into pretty strong denial. She didn't want her daughter to have anything wrong with her. She also felt a lot of guilt because if in fact I did have Tourette's (which I do) and had tics as a kid (which I did, a lot!) then she had in reality all this time been telling me to stop doing something and in essence criticized and punished me for that I couldn't control and wasn't my fault. It was easier for her to deny the fact that I have Tourette's all together than to face her guilt. I understand why she was in denial about my Tourette's, but that doesn't necessarily make it right. Before camp though I kind of came to a realization that my mom would never fully accept the fact that I have Tourette's, would never spend the time she needed to to really understand it, and would never be able to put herself in my shoes even for just a few seconds.
When I came back from camp I still kind of thought there would be no way that she would ever accept my Tourette's or my involvement with the camp and the TSA i'm a part of. After camp though, I decided that even if she had a hard time accepting my TS, I wasn't going to be afraid to talk about it anymore around her or anyone else really. I wasn't going to be ashamed of the fact I have Tourette's because it's really nothing you should be ashamed or embarrassed of. I already knew this before camp, but knowing something intellectually is very different from feeling something inside yourself and believing it. I now feel and believe inside myself that Tourette's is nothing you should be ashamed of or shy away from talking about.
So when I came home, I didn't shy away from talking about camp or Tourette's with my friends or even my family. I talked about camp and my experiences there from my heart without hesitation. My new confidence about it I think is one of the things that helped my mom start to come away from her state of denial. I can safely say that at least for now, my mom is no longer in denial, is no longer afraid to talk with me about Tourette's, and is no longer hesitant about me being involved with camp twitch and shout and the TSA group. You guys have no idea how huge this is for her! Or maybe you do know, especially those of you who have gone though something similar with a parent, retaliative, or friend.
I have been able to talk with my mom about camp, about the TSA group and my new leadership position with the group (the teen/young adult group I have been put in charge of), and about Tourette's in general. Before, almost every time I tried to talk with her about Tourette's she would get angry, go into a spinning denial, and we would both leave the conversation upset and more often than not, in tears. So for a while of course I just gave up on talking with her about anything related to Tourette's or OCD. Now however, she is in a much better place about it. I think a few things helped her:
1.) That going to camp made me so happy and helped me to step out of my comfort zone and try things I have never had the confidence to do before
2.) The fact that camp exists and the fact that there were so many campers and counselors there with Tourette's. I think this helped her realize that Tourette's is definitely a real thing that real people in real life deal with and it's not just me.
3.) The fact that some people at camp have a very mild case and some people at camp have a more severe case. Hearing about the spectrum of tics helped her I think start to realize and take to heart the fact that that not everyone with TS has a severe case and just because I have Tourette's doesn't mean that everyone will always think I have a severe case or cursing tics. This has been a major fear of hers.
4.) My own new found confidence or talking about it and about explaining it!
The real test for her was when I showed her a new shirt that I got at camp. On the front it says "different is the new normal" and on the back it says "tourette's tics me off" or maybe on the back it says "tourette's Syndrome awareness". I can't really remember though! Anyway it says tourette's on the back and that's what matters for this story right now. So the shirt came in the mail because they didn't have any smalls left at camp. When it came in the mail I took the shirt out and I showed it to my mom with confidence. I showed her the front and the back and asked her what she thought about it. And drum roll please......she said she loved it!! I guarantee you before camp she would have said something like "it's cute, but you better not wear that in public because it says tourette's on it". Then I even decided the next day to wear it out and about and my mom didn't say a word. I know she knew I was wearing it but she made no objection to me wearing the shirt out and about in public. Now that is the kind of progress I have been waiting to see in her for a very very long time now. Operation "get mom to accept my Tourette's" = complete!
Now she's not perfect, and I wouldn't expect her to be because you really can't move from straight denial to perfect acceptance and support in one week, but where she is right now is good enough for me! If she stays where she is right now mentally about the whole thing I would be perfectly happy with that!
Saturday, August 3, 2013
Videos of Camp Twitch and Shout 2013
A video/ slideshow of camp twitch and shout 2013! The video cannot explain just how camp changes you and the campers, but it is an excellent video and comes as close to that as a video can come! Hopefully there will be more videos produced this year from camp twitch and shout 2013 :) http://www.youtube.com/watch?v=L4IUmO9V4GE
Here is also a video of closing ceremonies which is the closing of camp before everyone has to leave :( http://www.youtube.com/watch?v=ozD5H569xzo
Here is also a video of closing ceremonies which is the closing of camp before everyone has to leave :( http://www.youtube.com/watch?v=ozD5H569xzo
Thursday, August 1, 2013
Counselor Photo's of Camp Twitch and Shout 2013
Counselor Photo's of Camp Twitch and Shout 2013 !!!!
Go to Camp Twitch and Shout next year! DO IT!
Hey everyone! You all should come be campers or counselors (depending on your age) at camp twitch and shout next year or in the future! If you are 18 or under you are a camper and if you are 19 or over you are a counselor! Camp was amazing and I have come away more confident, more self assured, and just so comfortable with who I am, tics and all. Like really, camp changed my life. I am serious. You really just have to go and experience it yourself fully to know what I mean. I loved watching my campers grow and step out of their comfort zone throughout the week and I loved being able to do that myself as well! I feel like I have this whole new family of people who care about me and will support me no matter what! I no longer feel alone or like I am the only one dealing with this. I feel like I am a part of this amazing community of amazing and inspiring people just like me! I strongly encourage you all to look into camp for next year or for the future. It will change your life no matter how old you are, no matter if you are a counselor or a camper, and no matter how mild or severe your tics or associated conditions are. Here is the website for you guys to check out: http://camptwitchandshout.org/
Even if you are hesitant about it or nervous, please check it out and consider it! I was way nervous at first but all my nerves went away completely as soon as I got to camp. I didn't even know that I could ever feel as comfortable, as confident, and as okay with being myself as I was at camp. I had no idea that kind of comfort was even possible for me. I had no idea that I would feel like I had known the other counselors and campers my whole like after just a day or two. I never warm up that fast to anyone. You just have this amazing connection there to everyone else immediately and you just have to experience yourself before you can fully understand how good it feels.
Also, you don't have to have Tourette's to be a counselor there! You don't even have to know someone with Tourette's to be a counselor there! The counselors without Tourette's get just as much out of camp as the counselors who do have Tourette's!
If you have any personal questions for me about camp, feel free to contact me at jspershing93@gmail.com or at facebook though my facebbok page for tourettes: https://www.facebook.com/pages/A-Little-Bit-Different-Tourettes-Syndrome/164459540340080?ref=hl
Even if you are hesitant about it or nervous, please check it out and consider it! I was way nervous at first but all my nerves went away completely as soon as I got to camp. I didn't even know that I could ever feel as comfortable, as confident, and as okay with being myself as I was at camp. I had no idea that kind of comfort was even possible for me. I had no idea that I would feel like I had known the other counselors and campers my whole like after just a day or two. I never warm up that fast to anyone. You just have this amazing connection there to everyone else immediately and you just have to experience yourself before you can fully understand how good it feels.
Also, you don't have to have Tourette's to be a counselor there! You don't even have to know someone with Tourette's to be a counselor there! The counselors without Tourette's get just as much out of camp as the counselors who do have Tourette's!
If you have any personal questions for me about camp, feel free to contact me at jspershing93@gmail.com or at facebook though my facebbok page for tourettes: https://www.facebook.com/pages/A-Little-Bit-Different-Tourettes-Syndrome/164459540340080?ref=hl
Camp is over, but it’s never REALLY over!
Camp is one heck of an amazing place! I miss it so much already! I’m still speaking about camp in the present tense when I tell people camp stories right now. I refuse to speak about it like it is over. I am in denial that we are back in the real world. I cried quite a bit again now that I am home and realizing that camp is really over.
My awesome co-counselor, Becca, helped me calm down, though, and I have stopped crying for now, but know I will cry at least one more time in the next few days or maybe many more times. I just want to go back to camp or want all my camp friends to come live with me. Love you all, and of course I miss my amazing campers, too.
I just have to try to keep in mind what one of my campers said, that camp lasts all year because your memories of camp and the support from the people at camp who now care about you so much and will be there for you when you need them is always with you no matter where you are physically.
These girls are all so mature for their age. Many of them have to be to get though all they have gone through. Most of the time, the amazing words that come out of their mouths both surprise me deeply and touch me. This is what will get me though the year until camp again next summer. Hope this post makes some since even though I am super tired and teary-eyed right now . Just had to say this.
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