Nervous about Starting School Again....

Had to lay down for about 45 minutes to support my head against the mattress while having non stop vocal tics, head and neck tics, punching tics, and full body tics. It's been quite a while since that has happened. I think one of the reasons is because i'm getting nervous to start my Junior year of college. I still have 4 weeks of summer left, but my brain always seems to want to jump ahead......I guess i'm nervous about the first few weeks of school which always tend to consist of a constant stream of explaining Tourette's to the new students living in my dorm, my new classmates, and new professors. While most of the time I actually enjoy the opportunity to educate others about Tourette's, the first week of school I end up explaining myself and educating others around me so much that I just tend to get a little frustrated with it. Also even though I've done this so many times before, I still get nervous being in environments with new people who don't know about my tics yet.

Even though i'm nervous about it, I know it will be easier this year. After my second year of being a counselor at camp twitch and shout, I know I'm more confident in general, even better at talking openly and confidently about my Tourette's, and just like last year I know I have my camp family behind me who all know exactly what it's like to live with TS. Also I have some great friends from last year who will be living with me again this year who will be there to support me. Regardless of all of this though , i'm still nervous and can't seem to shake the emotions....

Camp Twitch and Shout Post #4: How Camp Has Helped My Parents Accept My TS

As those of you who have been following my blog know, when I was diagnosed with TS, my parents were in complete and total denial. They were in the room with me when the neurologist told me that I have Tourette's but they didn't believe it. They didn't believe that their daughter could have something like this. It was other people and other people's children who were diagnosed with things like this, not them. 

So their reaction to tell me not tell anyone about this diagnosis, that the diagnosis was probably false and the reason I had tics was probably because of my OCD and that once I went on OCD medication my tics would go away. They choose to ignore the fact that the head of the movement disorders clinic at a prominent university was convinced after talking with me for 15 minutes that I have Tourette's, the fact that my first cousin was diagnosed with Tourette's as well (unknown to me) about three months before, the fact that pretty much everyone on my dad's side of the family has OCD, and the fact that the Tourette's diagnosis explained pretty much everything that had been going on with me since I was three years old. They continued to ignore these facts until I came back from my first year as a counselor at camp twitch and shout. 

Camp is the thing that really made the difference with my parents accepting that I have TS. Camp gave me so much more confidence about talking about TS that I just started talking about my TS around my parents a lot more when I came back from camp. I thought my parents would never accept the fact that I have TS, but now coming back from my 2nd year as a counselor both my parents accept and beleive that I have it, are so supportive and proud of my involvement with camp and the general TS community (i'm on the board of the TSA and do research on TS as an undergrad assistant), and my mom and I frequently talk about it using the actual word Tourette's. 

At first my mom wasn't even able to say the word, and now she gives me research suggestions, uses the word freely and openly with me, and last night we watched the SBS dateline documentary about camp together and she said she really enjoyed watching it.

I think what really made the difference is camp, talking about camp with my parents, and reaching a point where I felt I no longer had to prove to them that I had TS. I knew I had TS and no one else needed to believe that besides myself and my neurologist for it to be true. Then somehow the acceptance came naturally. My parents just needed time, exposure to the concept, and quite a lot of education about what Tourette's really is.

All that being said, they aren't perfect. They continue to tell me to be very careful about who I tell about my Tourette's. They just want the best for me and don't want anything to hold me back in life, and I understand that. They don't want me to openly admit I have Tourette's publicly or on the internet (hence the pen name for my blog, because if my parents found this blog I would never hear the end of it). I feel confident that if other people know I have TS, they won't view me any differently. Again and again this fact is proven to me. I tell people in my life on a regular basis that I have TS, because, well,  it makes my life so much easier for them to know what's going on when I start making noises and twitching a bunch in front of them. Almost everyone in my life knows I have Tourette's, and they still treat me the exact same way as they did before they knew. I have so many friends who are so supportive about my Tourette's and who accept me for who I am. They love hearing about camp, openly ask me questions, and joke with me about my tics to lighten the mood when my tics are bad. I feel so lucky to have such an amazing support system and I am so glad that slowly but surely thanks to camp twitch and shout my parents are coming on board :) 

Camp Twitch and Shout Post #3: Feeling Proud of My Campers :)

Camp Twitch and Shout. How in the world do I begin to write about this place and express even a fraction of the way I feel about camp? All week I saw my campers growing into themselves, stepping out of their comfort zones, accepting who they are, and for some of them being able to be free of judgement for the first time. I loved so much that every single person at camp saw them as so much more than just a person with Tourette's. The week of camp is such an incredible gift for these kids and I feel that I am a part of that. Every time I saw one of them stepping out of their comfort zone, making new friends, relating to the others campers, or opening up I felt so proud.

At the same time I found it difficult to watch them have a hard time with their tics, anxiety, OCD, sensory issues, or other associated conditions because I know exactly how it feels. I'm so much better at managing my tics and associated symptoms than I used to be. At 15 and 16, my tics, OCD, and anxiety were at their worse and seeing my campers go through what I had to go through was difficult at times. Because I know exactly what it was like to be in their shoes and because I have moved past and conquered many of the issues I dealt with at their age, I felt like I was able to comfort them and help them through their issues in a special way. I was able to say to them the things I wish someone had said to me when I was going though the same thing at their age.

So many of my campers and the things they said to me brought me right back to when I was right in "the heat" of my disorders. They brought me back to the time when at 15 I spent time away from my parents and became so distressed by my tics and OCD that I had to go home early. They brought me back to when my swallowing tic was so bad that I couldn't sleep for days because of the pain and obsessing it caused and when my OCD made it so difficult to do simple things such as walking down stairs, drinking out of a water bottle that accidentally touched the ground, letting other people use my lap top, and touching door knobs and other people's hands because of the worries and obsessions my OCD would put in my head. It was difficult to be brought back to this time, but at the same time it helped me to share my story with my campers and motivate them to keep pushing forward through the hard times in such a personal way.

My campers really appreciated hearing my story, and hearing the things I went through at their age. First of all it made them feel less alone, but also it gave them someone older to look up to who has gone through the same things they have. Seeing that I have Tourette's and the associated conditions that come along with it and am a successful college student moving towards a degree in neuroscience gave them hope that Tourette's really is not a stop sign. They also really liked hearing that I research Tourette's. A lot of kids with TS have the strong desire to either become a neurologist or somehow work with kids who have TS when they grow up so they can help others who deal with the same things that they dealt with as a kid, so I think they could really relate to the research I do and my desire to continue to research TS in my future.

I absolutely loved the opportunity to get to know all these wonderful girls! As much as I might have inspired them, they inspired me just as much if not more! I feel like I have said this so many times, but I will say it again and again and again: these kids are so strong, beautiful, and brave and I feel so lucky to have been able to spend the week with them! As one of the camp nurses 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." What she said is beyond true, and it is something I witnessed again and again throughout the incredible week of camp :) 

First night of meds for RLS, Melatonin and Iron

My first night of Melatonin went well!! I fell right asleep with no tics interfering with sleep and only a few RLS movements. I don't know if this was because the Melatonin or if I am still simply more tired than usual and less stressed than usual because of summer, but we will see. Hopefully that night of amazing sleep is just a small sample of what's to come! Gosh my life would be so much easier if every night was like last night! Fingers crossed! 

Also I took my first dose of Iron for my RLS this morning! Hoping that works too! 

Restless Leg Syndrome And Tourette's

Tonight will be my first night taking Melatonin and tomorrow I will take my first dose of Iron. Both are to help with my restless leg syndrome which is yet another co-occouring condition that comes along with Tourette's. Both my brother and I have restless leg. He was diagnosed half a year ago and I was diagnosed about two weeks ago. Restless leg is nothing compared to my OCD, anxiety, panic attacks, or sensory issues, but it has been starting to interfere with my sleep. Less sleep means more tics the next day, so hopefully this new medicine regiment will help with my sleep and indirectly improve my level of ticcing during the day! Wish me luck 

Camp Twitch and Shout Post #2: My Amazingly Compassionate and Supportive Campers!!!!

As those of you who have been following my blog know, I experienced a very short bout of Coprolalia about a month before camp this year. I'm not sure why it started or what triggered it, but for about a week I would very quietly say the f word. After that one week though, it completely went away and hasn't shown up at all sense then. I was really thankful when it went away, and I think it truly just was a strange fluke!

At camp quite a few of the campers and counselors have Coprolalia, so I was a little nervous that I would pick it up again. The first two days I was around a lot of people with Coprolalia and it seemed to have absolutely no effect on me whatsoever. I was feeling no urges to say curse words even though my other vocal tics were more frequent and being triggered by all the people ticcing around me. Some people even picked up my tics! It was so odd to hear other people doing my tics! One of my tics that a lot of people seemed to pick up was my tic where I say the word "no" and two people even picked up my tic where I say the word "woof".

Anyway, one night a lot of the campers and counselors were sitting in the same area waiting for something called tepee time to start everyone's tics started to go crazy! We all started setting eachother's tics off and my tics of course were being set off too. A lot of people with TS have something called echolalia which means we echo the words of others. This is one of the reasons that it's so easy for those with TS to pick up tics from other people. For me, I usually don't pick up other's tics that often, but sometimes I will hear someone tic or just say something regularly and I will echo the word back regardless of what the word is. It doesn't happen to me now as frequently as it used to when I was young, but every now and then i'll echo back a word or phrase that I hear. Sometimes I will echo back a simple word like "lunch" or a phrase like "let's go to lunch", but sitting there waiting for tepee time to stop, I echoed back fairly loudly a curse word that one of the campers ticced. I had absolutely no idea that I was going to do that and it took me by complete surprise. I was so shocked, mainly because it was completely involuntary and came with no warning and as soon as I realized what I had ticced, I quickly put my hand over my mouth and without thinking I said "oh my gosh, i've never done that before.

Even though I've had a very brief tic of saying the f word very quietly, it seems to have been a fluke and seems to be gone for good, and I have never echoed back a curse word with literally no warning whatsoever. My campers immediately noticed my reaction to my tic and I can only assume I must have looked very shocked and somewhat scared even. My campers were absolutely amazing. It was so sweet how they werew concerned about me and wanted to make sure I was alright. They weren't concerned with what I had ticced (the word was pretty mild compared to other curse words, and even if the tic would have been a more serious curse word, they still probably wouldn't have been concerned about that at all), but instead they were concerned because of my reaction. They wanted to make sure that I was emotionally okay. I told them all that I was fine, and that the tic had just caught me off guard and surprised me. I didn't want them to worry about me.

Even with this explanation though, my campers still wanted to reassure me that everything was okay and that they were there to support me just like I was there to support them. The thing that really stuck out of me is when one of my campers said to me "It's okay, we all have Tourette's here!" That was so sweet of her and it really did make me feel better! I absolutely love how amazing and compassionate all the campers at camp twitch and shout are. They are such sweet kids who care about the other campers and their counselors so much. It was a real blessing to have been able to spend the week with these kids! I always feel like I learn so much from them every year. They are so strong, beautiful, and compassionate, and I know that others out in the world will see that just as I do :)

How to Deal with Homesickness and Camp Sickness: From A Camp Twitch and Shout Counselor's Perspective

This will be my first blog post in a series of blog posts about my experiences as a counselor at camp twitch and shout! I am so blessed to have been able to come back as a counselor for my second year and I can't wait to go back next year! I have so many campers who made me pinkey promise to come back again next year as a counselor and I completely intend to keep my word!!

The first thing I want to talk about in this series, is homesickness. Homesickness is one of the first things that counselors and staff will encounter at camp regardless of the age group of the campers. I have always been with the older girls at camp, but even though they are older this does not mean they will not experience homesickness at the beginning of the week. On a similar level, the older children especially might experience "camp sickness" when they get back home. The kids experience very complicated emotions during the week of camp. They love and cherish the opportunity to come to camp twitch and shout and to be with so many people who know exactly what it's like to live with Tourette's, but at the same time they may miss the familiar and safe home environment that they are used to. Even returning campers who have been coming to camp for years are not immune to homesickness. Kids with Tourette's will often have more anxiety, so this makes homesickness even more prominent and distressing for a lot of TS kiddos.

Over the course of my two years as a counselor at camp, I have had quite a few of my older campers experience homesickness. Some of the first signs that a camper may be experiencing homesickness are not wanting to talk to other campers, wanting to stand or sit very close to a particular counselor who they feel comfortable with, and/or hanging back from the group. As a counselor what I do when I see these signs is I asses the situation and when the time is right (usually during a quiet and calm time of day), I ask them a neutral question such as "How is everything going?" or "How are you doing?" to give the camper the opportunity to open up to me about their emotions or thoughts. The camper may not want to talk about their homesickness or may in fact just be tired, so if they say they are fine or don't want to talk about it, don't push them. If they need to, they will talk to you when they are ready.

I feel so honored when a camper comes to me with difficulties they may be experiencing. Although it may be hard a first to see them experimenting difficult emotions, especially because it reminds me of exact emotions I dealt with at the same age, when they open up to me I know it means they trust me and feel comfortable with me. I also know that I have the opportunity to help them feel better and to get the most out of their week at camp.

A lot of times though the camper may be waiting for an opportunity to open up about their feelings to their counselor. They'll open up and express their feelings, especially if you give off a warm and accepting demeanor towards all of your new campers and campers from previous years that you may see around camp. In my experience, when a new camper sees that you as a counselor have strong bonds and relationships with other campers around camp, they are more likely to trust you and feel safe with expressing to you any difficulties that they may be dealing with.

When a camper opens up to you about their homesickness they may start crying. Older campers especially may express that they feel embarrassed that they are homesick and embarrassed that they are crying in front of someone who they look up to. The embarrassment about their tears and homesickness combined will certainly increase their anxiety and distress in general. So, before you can even address their underlying homesickness, I have found that the best thing to do is to normalize their feelings. Let your camper know that it's normal even for older campers to miss home and that it's okay to cry. Something else i've been able to do to normalize their feelings is to let them know that when I was their age and away from home I experienced homesickness as well. It seems to really help them to hear that their counselor, someone who they look up to, has experienced the same thing.

After their feelings have been normalized, another thing I have done with my older campers to help with homesickness is to remind them of how they have dealt with similar situations in the past. If the camper has been to camp twitch and shout or any other camp before I lead them through a series of questions to help them recall their past experience. First I asked "Have you been to camp before?", and if the answer is yes I will follow it by these questions "have you been homesick in past years?", "how long did the homesickness last before?" and "was there anything that helped you feel better in the past?". Usually a returning camper will tell me they have been to camp before, were homesick on the first day or two, and then as they got more and more used to being in the camp environment their homesickness quickly went away. Sometimes the fact that this has happened before and has quickly gone away after a day or two in the past is clouded by the heavy emotions the camper is feeling in the moment, so they will usually need to be reminded of this and be helped to recall this from their memory. Remembering how they dealt with homesickness in the past seems to really help! In addition, you're not simply telling them how to deal with their homesickness but instead your guiding them towards the answer and helping them to develop self soothing and coping strategies that they can use in the future when they may not have a counselor to turn to. In a similar way this strategy can also be used with camp sickness when the camper gets home from camp and is missing camp and their friends.

For campers who have not been to camp before it can be helpful to use the same strategy, but instead of focusing on how they felt in the past at camp focusing on how they felt the first time they went to a sleepover or spent a weekend with their grandparents away from home.

Campers also seem to really benefit from simply having someone to talk to our their emotions. They need someone kind and compassionate to listen to them and understand them. For a lot of campers, keeping these emotions inside instead of talking about them and dealing with them can cause the negative feelings to build up and fester inside of them which can significantly interfere with their week. So even if for some reason the camper does not seem receptive to the strategies I have listed above, simply have someone to talk to about their emotions can help.

It's important for campers to be able to talk openly about their emotions, but at the same time you don't want your camper to talk about negative emotions like homesickness to excess. You want to find the right balance between giving them time to express their feelings and then helping them to move forward and focus on the current moment. The more and more the camper talks about or focuses on home, the more homesick they will feel. So after they have expressed their feelings and after you have tried to help them to feel better, it's important to help them move on and to distract them. For younger campers you may want to engage them in a fun game or activity with the rest of the group of campers, and for older campers you may want to even suggest to them that focusing on their homesickness for too long may make it worse and that it will help them to feel better to focus on something else or engage in a different type of conversation or activity. When I have made this suggestion to older campers, they have come to realize that focusing on the homesickness too much does in fact make it worse and that it's important to stay focused on the current moment or current activity in order to distract them from negative feelings. Distraction and staying focused in the moment is also important for camp sickness. Make sure your camper or child isn't focusing on the past or future, but instead focusing on the here and now and it will help negative thoughts to fade into the background.

More posts to come about camp twitch and shout!!! :)