Camp Twin Lakes XVII - Outdoor Living Skills

This week I switched to work in the other CTL location in Rutledge. That means that while I know how to do all of the things, I'm not quite as familiar with the location. One of the session that we offer is called Outdoor Living Skills, which can be a pretty painful session. At Will-A-Way, we have a treasure hunt set up to teach the kids how to use a compass. At Rutledge, we discuss camping skills and maybe try out a few things like fire building, tent pitching, random play in the woods, etc.

I was scheduled for an OLS session with ten year old boys this week. I was a little nervous about not having the treasure hunt, but still confident. One was in a wheelchair to reduce internal bleeding (he had hemophilia) from a sprained ankle. I met them at the ball field with the external frame backpack full of camping essentials, and we went through the list and talked about each one in the shade. They seemed pretty interested, or at least interested in relating each of the items to a bear attack. When I got to the end of the list, I told them we'd go down to the camping outpost to try some fire building. They were pumped!

Now, here's the thing... I hadn't actually been to the camping outpost before. Somebody told me the trail to it was behind the ball field. So I found a trail that looked promising and off we went! As we walked, we sang "Goin on a bear hunt" and related the verses to the trail we were on. Once we came to a huuge field with nothing looking remotely like a campsite in sight, i was like 80% sure we were on the wrong trail. My poker face went into full swing.

"Are you sure this is the right trail?" asked a counselor.

"Yep!" I said.

"Are there snakes out here?"

"No way!"

"Are there bears out here?"

"Not at all!"

All bluffing. As for the bears and snakes, it's not that I knew there were any, I just didn't really know the status yay or nay.

It had to be between 90 and 100 degrees outside, and we were out in a field with absolutely no shade anywhere. The kids and I were dripping sweat - they were begging to turn back so I said "What do you guys say we stop right here and try building a fire?"

So there we sat, trying to light sticks on fire with a single set of flint and steel, blazing hot. I wanted to tell them that I've scared a bear away before, but I felt that with all the bull I was telling them before, they probably wouldn't believe me. The counselors had found a scrap of shade and were standing in it skeptically . I turn around and see one kid with his shirt off, spinning in circles saying "I'm dying of heat stroke, I'm dying of heat stroke!"

Finally I decided it was time to pull the plug. "You know what guys? You're doing such a great job that I think I'm gonna let you guys go a little early!" We headed back through the random field and the blazing sun. The wheelchair got stuck a couple times, it was crazy.

I thought I had gotten away with it without them knowing until I was walking back towards the dining hall after the session. I ran into one of the other counselors that hadn't come. He came up to me smiling and said "Hey Mike! I'm sorry I missed the session. I went down to where the campsites were and I didn't see you guys!"

I was glad he hadn't said that in front of anybody else from the group. I hoped that he wouldn't think to say anything to them later. I looked off in the distance and said:

"Hmm.... how strange....."

Camp Twin Lakes XVI

A little over Twitch and Shout left, I still have a lot of vocal tics. It's fine being at camp, but it would be difficult at school. It's a little strange, most of the staff forget when I didn't have vocal tics - kind of a strange play in identity!

This past week was absolutely amazing. The camp was dedicated for kids affected and infected by HIV. I didn't realize how much people with HIV have to hide - in fact, this was one of the only camps that is openly HIV, many others operate in secrecy. The large majority of the camp were inner city kids from Atlanta. I was a little worried about how the kids would react to being in the woods and to camp in general, but it couldn't have been better.

The kids and the counselors were an amazingly cohesive group. I knew all of the counselors name within the first day (never happens) and the kids immediately identified with the counselors and gave them respect. The kids treated each other like family, encouraging each other to try new things and enjoy every minute of camp.

Many of the campers were wary of my tics at first, but during opening ceremonies I got on stage and gave an explanation of my Tourette's. I always do my best to not parallel my Tourette's with whatever special need they might be at camp for (in this case, HIV). All though it might be a common thread to share, I have no idea what they've been through and if it really can be compared. I'd much rather them make that connection on their own. With that in mind, once I explained about my Tourette's the campers took to my Tourette's in a great way. The younger ones used my tics as a greeting to me and to each other, and even started affectionately calling me "Tip," my most common tic at the time. The older ones asked me questions, and even told me about friends and family members who have Tourette's. In fact, one of the kids in my cabin had Tourette's and I didn't find out until the last day. He was beaming when I asked him about it!

Camp is amazing.

Camp Twin Lakes XVI - Twitch and Shout

Reflecting on Camp Twitch and Shout, it was a great experience and I can't wait to help them out next year. I wasn't sure exactly what I wanted to get out of the week, and it was good to go in with no expectations. I got to meet Brad Cohen, author of Front of the Class, a book about Tourette Syndrome which has meant a lot to me and others. I also got to meet Jimmy Wolk, the actor that played him in the Hallmark movie based on the book. Both guys were phenomenal at camp, and I got to be particularly close with Jimmy. Here's a (bad) picture of the three of us:

Jimmy Wolk, Me, and Brad Cohen

This summer has really pushed me towards music as a career and possibly music therapy. Brad was the founder of Camp Twitch and Shout, and I (probably) wouldn't have known about Brad had it not been for the movie. I had them both sign a little djembe that I've had for a while - a significant thing, I think!

Camp Twitch and Shout had a Hollywood theme for their dance, red carpet and all that. On each of the six doors, they put up a star with somebody's name on it. Two were the camp directors, one was the nurse, one was Jimmy, one was Tim Howard (Team USA goalkeeper, who has Tourette's), and one was for me. It was a small gesture, but a meaningful one. At the end of the night, Brad found me and asked for a picture with me. Also a small but meaningful gesture. Meeting the Twitch and Shout crew really showed me how much is being done, but also how much is still needed. I want to take this motivation back to UNC, raise some money for next year, start a group - and who knows, maybe even create some awareness ;-)

Brad and I after the Twitch and Shout dance

Camp Twin Lakes XV

Camp Twitch and Shout left today. A lot of them were crying as left the friends they had made and ventured back into the real world where tics weren't the normal thing anymore. I welled up a little bit too, as kid after kid came up to me saying how awesome of a time they had at camp. Now that I have some time, I want to write about some stories from camp that really stuck with me.

One of the kids in the cabin I was hanging out with was Holden, who I mentioned in an earlier post. Holden was a little different than most, it seemed like his parents had a very intolerant view towards his Tourette's because he continuously apologized for his tics and had a few other strange attitudes towards it. Holden did not seem to be aware of religious diversity in the world, because one day he began talking about religion with his favorite counselor, Jimmy. Jimmy was trying to avoid the subject and yet be honest. After Holden realized that Jimmy's beliefs were not the same as his own, he asked "If you're not Christian, then what are you?" to which Jimmy answered "Well Holden... I'm Jewish." Holden held it in for a while, but began to break down as soon as Jimmy left the room. Another counselor, Zack, tried to console by explaining to him that Jesus was Jewish, which further confused Holden and his religious identity. By the time I entered the scene, Holden was ticcing the word "CHRISTIAN" very loudly and almost painfully in the cabin. It was hard to tell if it was a tic or a strange sort of plea. Holden found a closet and shut himself inside it - Zack and I let him be for a while. He also started ticcing the words "JIMMY" and "PEANUT BUTTER." It's uncommon for tics to directly relate to what the ticcer is sad or upset about, but it Holden was clearly upset about things both religious and culinary. Zack got the rest of the cabin playing a round of Apples to Apples while I went to Holden's closet.

I opened the door and found him sitting - he was crying loudly and asked for his parents. After many attempts to change the subject, I told him I was kind of hungry and would like to sneak an ice cream sandwich from the dining hall and would like some company. He agreed, and off we went. We walked in silence most of the way, and as soon as we left the cabin he didn't have any of the afore mentioned tics. We made our way to the dining hall where I deftly scooped two ice-cream sammies out of the freezer without any other campers seeing. Holden and I left the building and walked towards archery. Here's what the conversation was like:

"What's been your favorite part of camp, Holden?"
"Tourette's."

"Yeah it's good to be around people like you."

"Yeah."

"Tell me about your life, man. Tell me about you."
"Well... I like... I don't like my Tourette's. I like video games."

"Me too, Holden."

After a long pause, he said: "Thanks for being my friend."

And with that, we turned around and went back to the cabin. We didn't talk about Jimmy, or Jesus, or anything really. It was just being there that helped Holden calm down.

The next day, I was reading the Sungrams during the camp news. Sungrams are little messages campers can write to one another for encouragement or compliments. I was getting towards the end of the Sungrams when I got to one in particularly scribbled handwriting. I made eye contact with Jimmy, then the slightly strange but heartfelt message:

"To Jimmy from Holden. You are a good friend. You are like my dad."

The next story took place on the very last day up on the ropes course. We had a cabin of 15 and 16 year old girls doing the high team challenge, which is a team-building challenge that we can send up to eight campers and/or counselors on at a time, thirty-five feet up in the air. One girl in this group named Emma seemed to be having a particularly hard time with her tics. She kept making a big deal of it though, apologizing and saying something about each one to the group.

"CHICKEN TERIYAKI PENIS! ooh, that was kinda strange. ORANGE JUICE CUM! Yeah, didn't mean that one..." and so on. When we were clipping her into the ropes course, she said she was worried that she would have a tic to unclip her crab claws (the device connecting the harness to the safety cable) or jump off the platform. The counselors were devided; a couple knew she was doing it for attention, while the other CTL facilitator was giving in, asking the girl if she would be safe up there or if maybe she shouldn't go. I knew what was going on, so I told the other facilitator it was fine and we sent the girl up. It took her about twenty minutes to get up the cargo net, a feat which takes most kids - even kids with tics worse than hers - about two or three. She sat on the platform at the top and waited for the rest of the cabin to get up. While she was up there, she had a few tics that made her jump off the platform (a few kids actually had that throughout the week) but don't worry, she was clipped in and perfectly safe. We got the cabin up there and began the activity, to walk across suspended pieces of wood while the group held hands in a circle. Emma began to talk about 'what if she got a tic and made people fall,' and began crying that people would get mad at her. I was starting to get very irritated, because at this point I could tell she was embellishing her Tourette's for attention and keeping the group from doing the activity big time. Instead of coddling her or taking her down, I told her to wait in the back with me while the other facilitator took the rest of the group. Emma sat patiently while the rest of the group went, and while she gave advice and direction to the rest of the group, she didn't have any major tics or issues. After the group was halfway across to the next platform, I sat down across from Emma, and thirty-five feet in the air I said to her:

"Okay, let's talk. I know tics, and you know tics. We both know that we can do certain things to make them worse. I'm calling your bluff, I don't think your tics are as bad as you're making them. You haven't had any tics since you've been up here that make me nervous about you being up here."

She got big eyes, and said "Are you saying I don't have tics?"

"Notice I said I haven't seen any tics that make me nervous about you being up here. This is Tourette's camp, I have Tourette's, and you can do this activity, there's no reason for you to be sitting out. In life, you have to work past the tics and live life not thinking about it. Once you overcome them, people will respect you for that and you'll be better for it. I know, because I have. It's hard, because as Touretters we're naturally obsessive. But as soon as that group gets to the next platform, I want you to go over and join them."

That was all that needed to be said. From then on, her tics were average, and she acted like a regular camper, not pleading for attention. She got across the ropes course, and she and I even went over one element together, holding on to each others shoulders. We talked about life, and she told me about how much positive she has gained from having Tourette's, OCD, ADHD, and a learning disability. It was a great moment, and I felt good about it because nobody else could have done that. Someone with Tourette's doesn't know what it feels like, and wouldn't have been able to call her out like I did.

That's it for tonight, it's getting really late. Don't worry though, I've got more about Camp Twitch and Shout to write about!