Camp Twin Lakes XIV

Hi again! I'm doing my best to write about Camp Twitch and Shout as much as I can, but I want to spend as much time with them as much as possible! Being around these kids have made my own tics a lot worse, but I don't care a single bit because it's such an amazing place to be. My vocal tics usually consist of "HUWOP!" "DIP," or "TIP," but there have definitely been plenty of random ones as well as some coprolalia.

I've gotten pretty close to one camper in particular, John, who has very strong tics. An example of his physical tics, he hits himself (very hard) and gives people very violent hugs, and coprolalia. He and I set each other's tics off; when I hear him tic, it makes me tic, and vice versa just like a yawn. At one point, we were walking somewhere together and it sounded like this:

"FUCK!"

"HUWOP!"

"FUCK!"

"HUWOP!"

"FUCK FUCK!"

"HUWOP HUWOP!"

We both were very aware of the situation and how strange it was, but we couldn't stop! I led a drum session with John's cabin and it wen really well. All the campers were pretty chill, and were able to continue a beat without needing to do games and to keep them going. At one point, John started having a very strong bout of physical tics and went off to the side so that he could work them out. In my own experience, going off to the side just made it worse because it only gives more attention to focus on the tics. The group was self-sustaining for the moment, so I grabbed a drum, took it to him and said "alright John, I'm going to try something."

I got up close to him, almost in his face, and said "John, play this drum. Play this drum John. Play it. Now." He reached out and tapped it when he could; when his arm ticced away from the drum I kept it going "John, just play the drum play this rhythm." I was a little nervous that I might piss him off by being insensitive, but I checked in with him later and he was appreciative. I was trying to make him concentrate on using his body for a purpose, hoping to eliminate the idle body that is like a canvas for tics. I recognized some of my own tics in him, and I think that what made me do that was that I wanted to experiment and maybe learn more about myself. It didn't work as tearjerkingly perfect as I had hoped, but it was still a pretty powerful moment for me and I hope for him too.

That's it for now - I gotta go help at paddle boats!

Camp Twin Lakes XIII

Today was the first full day of camp for Camp Twitch and Shout, the first day of sessions! In the morning, I started out with two drumming sessions with girls ages (about) 10-14. It was a lot harder than I expected - the kids were easily distracted (especially with drums in front of them) and not terribly interested in the activities I had prepared. That's okay though, I've got all week to try it again!

I also got to go up on the ropes course with Jimmy - he and I partnered up and put our hands on each other's shoulders as we walked across wires 35 feet up in the air. I got a chance to talk to him about his depiction of Tourette's in the movie Front of the Class and talk to him about it.

This week is awesome!

Camp Twin Lakes XII

Before Camp Twin Lakes, I hadn't met anybody else with Tourette Syndrome. Today I met over a hundred.

Check in for Camp Twitch and Shout was today, and it was an incredible experience. For one, my tics went absolutely crazy, I was yelling and even had some very definite coprolalia going. It was really cool, because I could see so many kids who were nervous about coming to camp for the first time. I would let out a big "HUP!," they would look at me and their eyes would get really wide and their mouths open, in awe at the guy who was like them and walking around doing important-looking stuff! It's a good feeling that my Tourette's could provide so much comfort for the kids!

Specific story time: I went to meet the cabin I would be hanging out with for the week (which incidentally Jimmy is a counselor for) and we played a game of Apples to Apples. There was one kid - we'll call him Holden - with significant vocal tics, but most of the kids had physical ones. Holden seemed to have some other comorbidities, perhaps some ADD and maybe some Asperger's, I couldn't quite tell. When we were on our way to the dining hall, Holden walked next to me. Out of the blue he declared "you're cool." After denying his claim and telling him that in fact he was the cool one, he said very matter-of-factly "I have Tourette's, just like you." It was one of the awesomest things I've heard, because it sounded like it could have been the first time he was able to take pride in his disorder - and he did it by comparing himself to me. I can already tell I'm gonna cry when they leave!

Camp Twin Lakes XI

At last, Camp Twitch and Shout is here!

This weekend my mom came to visit this weekend and we went to watch Toy Story 3 together, an outing we had planned a year ago when trailers for the movie first started being released. We drove back to camp, and in the parking lot I saw none other than Brad Cohen himself, an author, speaker, and educator who I look up to immensely. The movie that they made about his life, called Front of the Class was a huge inspiration and has means a lot to me. I was able to collect myself in the car enough to act like a normal human being in front of him, but it was hard. He was with another camp director and other staff, both of which also had Tourette's. Being around other Tourettics for the first time, I was really excited and hoopin and hollering (involuntarily, that is!)

Later that night, Cate and I were jamming in the dining hall in preparation for the next week. At about 1:30 AM, one of the counselors came in to listen to us. "Sound great!" he said. I couldn't really see him, so I said hi and asked him his name. "My name is Jimmy." As he stepped into the light, I saw that it was the actor who played Brad in the movie. I had held myself together when I met Brad, but when I met Jimmy, I lost it.

"uh... my name is Michael... hummahumaa a movie guy...." and so on.

Basically, this week is going to be AWESOME.

Camp Twin Lakes X

This week and last week we've had camps for people with developmental and other mental disabilities. The first week was for youth ages 7 to 30, and this week is adults ages 30 all the way up to 68. It's been a very interesting group, and just like with Roger from earlier on, it's clear that the people here aren't so much limited, they're just posed with different challenges. I've been leading a lot of drum sessions the past two weeks, switching with people so that I lead drumming multiple times per day.

The campers usually have a lot of fun, and often get really excited and really into it. One moment stuck in my head - I was leading a group of girls who were probably about my own chronological age in a drum session, and I told them "you all are doing wonderfully, we'll all be pros before you know it!" One girl was particularly moved, and jumped up and said "I'm doing it, I'm doing it! They always tell me I can't, that I'll never be able to but look at me now, I'm DOING IT!!!!" It was very touching, because it was very heartfelt and very real.

This week we have older people - I thought it would be different than working with kids, but it's really not. Other than having more medical issues and being more interested in sex, it's the same as working with kids. There's one guy who's in his late fifties, he looks like he could be a friends dad, but once you talk to him, he's very much at a 6 or 7 year old level. He likes to try pulling pranks on the women, he gets nervous and shaky if he thinks you're going to get angry at him, and so on. During my drum session with his cabin, we went on a 'drum parade' where we sneak up to other sessions and surprise them with loud noises and percussion. Somehow, he had heard about the drum parade before and asked to do it as soon as the group sat down. He had such an awesome time sneaking around to other sessions, it was a sight to see. When we snuck up on the dance and movement session, he ran circles around the group holding his lollipop drum high above his head. It was awesome to see someone so old having such a good time.

Also, I found out from a guy with Savant's Syndrome I was born on a Thursday. The point is, I'm really enjoying teaching drumming, and I'm going to start looking into music therapy programs once I get back to Chapel Hill.

Cheers!

Camp Twin Lakes IX

We had a camp come through that was exclusively for children with burn injuries, Camp Coldwater. This camp has been going for eighteen years, and they are on top of their stuff like nobody's business! They had all sorts of things planned and ready; in fact, they brought in an 18-wheeler full of toys, golf carts, and other equipment to give these kids the best week ever. While many camps may bring in about half as many volunteers as campers, Camp Coldwater actually had significantly more volunteers than campers. They were able to have generous camper-to-counselor ratio in the cabins, as well as plenty of administrative staff and special teams. The volunteers were mostly firefighters, but there were also plenty of previous campers and UGA Social Work students.

My favorite was the fluids team - because skin grafts don't sweat, overheating can be an issue. There were two golf carts and about five or six people dedicated to bringing mixtures of kool-aid with themed names such as 'Dragons Breath,' 'Peasants Revolt,' and 'Damsels Delight' for the kids. They had their own walkie-talkie channel specifically for fluids, so that any time a kid said "I'm kinda thirsty," their counselor would radio for fluids and they'd show up at the drop of a hat.

I wasn't really sure what to expect in terms of interacting with the kids, specifically towards their injuries. At the routine staff medical briefing meeting, the nurses told us that some kids were injured in accidental fires, while others sustained their injuries from the malicious intentions of others. The first day, I noticed every burn, every skin graft. When I introduced myself to the cabin I was assigned to help out for the week, the counselors told me their own burn stories within about an hour without any prompting or asking:

"Hey, I'm Clint, I've been coming to camp since the first Camp Coldwater eighteen years ago. When I was four, my mom was cooking bacon and I climbed up the stove and knocked the pan all over myself."

Walt told me a touching story - "When I was a kid, I was pourin gas on a fire to see it light up, you know? The first couple times it was really cool and the fire - like - WHOOM - ya know! but then the fire went up into the gas can, and it exploded all over me. I could hear my brothers yellin "Roll, man, roll!" so I did and it worked. My Mom poured cold water on me from the hose, and the doctors said that's what helped keep me from bein burned real bad. I camp to camp the second year, that's where I met Clint. Then you know Kathy? She bit a TV cord when she was little and has a burn on the side of her mouth. We met then, too, now we're married with one kid and one on the way!"

At Coldwater I didn't make as many close bonds with individual campers as I had for some of the other camps, but I had a lot of smaller moments with a lot of them. Many of the campers and volunteers this week were from the deep south, real country boys and girls and proud of it. I'm a little ashamed to say, there was one instance in which I thought a kid had some cognitive deficits, but it turns out he was just being country. 'Deep South' isn't really a heritage that I particularly identify with, so I was a little self-conscious sometimes about how I came across.

However, the fact of the matter was that the kids were still kids at summer camp, and therefore they think every little thing you do is awesome. One moment stuck out in my head the most. I got to MC the talent show, which I did dressed as a banana. All the kids loved it, and I was from then on known to the campers as "Banana Man." Even the ones who I assumed I would have the least in common with would come up to me with all sorts of high-fives and hugs and smiles, telling me what they did that day and the recent news with their date to the prom and with their friends.

The Banana Man

There was one moment of camp that stuck in my head the most. The cabin I had been hanging out with all week had asked me to do a drumming session with them during camp swim time. I took the six boys (ages 11-12) and Clint over to the pavilion and asked them to pull over three picnic tables in a U-shape so that we have a place to sit. Immediately, the boys each ran to a different table, each one tugging with all his might. I called them back over and told that it was a team building exercise (bluffing) and that they need to work together. With that, they all went to the same table but started tugging and pulling at different times and angles. The more dominant boys started getting frustrated and began barking orders, while the others - and one in particular - were very clearly getting upset. Clint and I got them all to stop and sit down at one of the tables and take a few deep breaths.

Then, we started talking. It was very difficult for them to create constructive criticism, and even harder for them to point out their own shortcomings in dealing with the situation. One boy even had some tears, because he had been picked on throughout the week by some of the tougher boys. Finally, we came to a consensus about how to treat each other and the method of going about moving the table. The group elected a leader, and he led the team to move the tables. It was still rough, but the job got done.

During the drum session, I tried my hardest to pick activities that encouraged teamwork and emphasized that we were working together to make one sound. It was a difficult session to get going, but picked up pretty well considering the earlier frustration.

After the session, it was time to move the tables back. I had hoped that my budding skills as a drum-circle facilitator had worked miracles, and that they would be able to move the tables with smiles and laughter, and we'd go skipping merrily into the sunset. In reality, it was still a difficult task to move the tables. BUT it happened, and it happened with considerably less frustration and agression than the first time.

It's funny how little unexpected moments like this can pop up and really have an impact on you. At the beginning I was a little anxious about what it would be like to work with kids with burn injuries. It turns out that as usual, kids are kids no matter what. The rest is only skin deep.

Camp Twin Lakes VIII

Most camps have a dance towards the end of the week. It's funny how a silly little event that we put on by simply pressing 'play' on an iPod can cause so much excitement in a group of kids! They get all nervous about who they like, whisper to each other about who's cute and who's not, but only the brave ones actually ask somebody to the dance. Matchmakers emerge, it's kinda funny to watch one go between two worthy candidates and next thing you know, another pair are going to the dance together. The expert matchmakers keep lists, I've seen it with my own eyes! One little girl will go up to the other and ask for some help, and the second girl will respond with "I'll get you Ryan, Trevor, or Carson, take your pick." They might even try to get two counselors to go together if they get confident!

This particular week I met a camper named Derrick who has Celiac Disease, which is intolerance to a protien found in wheat, rye, and barley called Gluten. It's not actually an allergy; the immune system goes on 'self-destruct' mode whenever this protein is present. It can be pretty severe; even food that's been exposed to something with flour can set of a reaction! Even though that week was designed for kids with Celiac Disease, they were so used to checking everything they ate that for the first few days they asked to double check if each food was gluten-free. Derrick and I got along pretty well - he was a pretty chill 9-year old who's in cub scouts and always participated in stuff. He showed interest in the Ukulele, and he picked up a few chords pretty fast! I asked if he was going to continue into Boy Scouts. He said no, that it would be really difficult to do campouts with his dietary needs. I took the opportunity to tell him about my journey with Tourette's, and how I continued with scouts anyway and ended up with my Eagle rank. It was like putting in a message in a bottle because you know that it's an important message but you have no way of knowing if anything will happen because of it.

Right before I left Chapel Hill to come down here, I bought this old suit that looks like it's at least thirty years old for ten bucks at a thrift store. It's gray plaid, and the pants come up to my stomach. Counselors at the dance are supposed to be a mix of party starters (too keep the kids from being glued to the walls) and 'room for Jesus' police (to keep the kids from being glued to each other). So naturally, I wore the suit. I also wore a black cap, rainbow suspenders, and an oversized bowtie for good measure.

I walked in a few minutes after the party started (I needed time to get changed!) and once the kids saw me they all started laughing and clapping. I made myself the life of the party, dancing super awkward to keep the mood fun. Right after I made my entrance, 9-year old Lucy (the camp matchmaker) marched up to me and snatched off my hat and bowtie. I watched as she went back to her date (Derrick), put the accoutrements on him, and proclaimed "See? Now you're cute!"

My accessories ended up in various places on various campers. I looked over to see Lucy in the bowtie and Derrick in my hat and jacket, dancing like middle schoolers - arms stretched as far as they could go, trying as hard as possible not make eye contact. I love kids!

Camp Twin Lakes VII

One of the camps that came through here recently was a camp put on by a local healthcare organization. It was a study that put overweight children in an positive active environment with healthy food for a week, then follow up a couple months and see how they're doing. The hope is that the kids would all participate in the same physical activity available elsewhere, but would be doing it with other kids like them and would gain the confidence to join in activities back at home.

The dietitian was this intense little lady from somewhere in Europe. She planned foods like butternut-squash ravioli... things that under normal consensual circumstances would be fine and probably even delicious. However, when forced upon kids who were not used to these kinds of foods in the first place, it was not pretty. One girl was legitimately crying over the ravioli.

Just like in the movie Heavy Weights, the counselors had their stash of sweets. Since I lived in the staff cabins I did not need to hide it, but the poor volunteers who lived in the cabins did. There's a refrigerator in the dining hall that usually holds extra milk and stuff like that; this particular week it mysteriously contained piles of mozzarella cheese and bags of fun-sized candy bars. When nobody was looking, the counselors would sneak over to get their fix.

The last day of camp, Miss Tiff the dining hall director handed out cookies after dinner to all the kids. One asked if there was any milk; since it had all been put up since breakfast, she pointed him to the refrigerator in the corner. I knew what was in there, but I really wanted to see what was going to happen.

The little guy marched over to the refrigerator, and had his chubby little arm reaching for the door before one of the volunteers saw him. It was like a slow-motion action scene - the staffer yelled "NOOOOOO!!" at the top of her lungs and started shouting at the boy to stay away from the fridge. Other campers got the idea something good was in there, so they all got up and started moving across across the room, the fastest I had seen them go as a unit the whole week. The volunteer got up from her seat and started running; at that point it was just a battle of the wills. Somehow, she got to the refrigerator before it was actually ever opened. Throwing herself in front of the children like a human shield, she was able to get turn them away without them ever finding out what was in it.

Epic.