He’s very strong. Very strong. Zach Lamb suffers from one of the most severe cases of Tourette Syndrome in America. He bleeds off his energy on the punching bag, but all too often his rage tick is compulsively directed at his family. He hits them, especially his father, Carl. I’m disappointed in myself at times, when I can’t hold it back. I mean, having somebody hit you and try to stand there and not get angry, I mean, I have, uh, as early as last night, when he I was trying to do things, get things in the order around the house and.
He was punching the heck out of me. And I grabbed his arm and twisted it and I felt terrible. But it was a reaction. And. SIGHS It just was. Zach tries to redirect his rage ticks. The walls of his house have taken some of the worst of it. My Tourette’s, I take the hits, like, walls, hit stuff. And I like, to go, hit something, I feel pain. And it just, like, happens over time. And, in, like, a few days. You actually have to feel pain for the tick to go away.
Yeah, pretty much. Yeah, these two, I broke. Recently or a long time ago Mmm, about a few months ago, maybe. Are they feeling OK He hates that he’s become a danger to his family. I feel bad that I hurt them. Yeah. Have you ever really hurt them Oh, I don’t in the hospital, one day, and I hit, twisted the arm. Broke her wrist. And I felt so bad after that. I was crying about it. And she was. Yeah. What do you think would happen to you if you didn’t have the family that you have now.
Twitch and Shout Coping with Tourettes syndrome
I probably, like, put in, like, a mental hospital, probably. Like, ’cause that was an option but my parents were like, No way. You’re not gonna go there. Is that your worst fear Yeah, being separated from my family. Some children with Tourette’s have simple ticks. Not Zach, his ticks are wildly unpredictable. Beyond the rage ticks, there’s a form of spontaneous fullbody paralysis. To various kinds of compulsive selfharm. The cursing. Fuck you, fuck you, fuck you! Sorry! That’s OK. To the strangest feats of tormented acrobatics, none of it voluntary, most of it painful.
Are you OK Yeah. Zach’s single worst tick was a paralysis that lasted two full weeks and resulted in his having to be hospitalised and have a coma induced to bring his body back under his control. Hmm It’s kind of hard. It’s like he’s a prisoner of war. It truly is. He’s stuck. He’s entrapped in this body, doing these things that he has no control of. And I have to stand back, knowing that, and knowing there’s not a darn thing we can do about it. My boy is.
Too my role is to ignore a lot of what happens and to always try to teach him, or have him to understand or believe, that there is goodness within him and that this is all good. And that life is good and that we have ups and down, and all that stuff, but it’s OK., because it’s our life. It’s his life and so even when, you know, he beats us up, or, you know, tears down the house, yeah, it’s bad, in the moment, we all get frustrated.
And brokenhearted by it, but he doesn’t have control over it. Not too hard. The first thing anyone learns about Zach is that he has Tourette’s. The second thing anyone learns, if they’re paying attention, is that he’s one of the sweetest 14yearold boys you’re ever gonna meet. OK, call me Mommy Dearest! He’s quick to show me a photo of his deceased grandfather. Here’s my grandfather. I loved him a lot. You guys were really close Yeah, that’s me. That’s him. And while we’re filming, he politely asks if I know any guitar chords. I do and I show.
Him one. That finger goes on the third string. This one goes on the second. Yeah, that’s it. But just about my favourite hint at the boy hiding underneath all that ticking was a picture of a baseball he showed me, a sort of proposal he gave to a girl at school. She’s now his girlfriend. What’s the worst thing about Tourette’s Um, sometimes it’s hard to make friends, ’cause, like, they don’t know what’s going on with me. You have a girlfriend now Yeah. Does she mind when you tick.
Mmmm. She likes me for who I am. I haven’t been to the Villager forever. Zach does have a few good people outside his family who accept him. But every time he leaves his house, he pitches as losing battle to control the uncontrollable and the world is none too kind to someone with his condition. There is, in fact, only one place, once a year, where Zach feels like he can really be himself. I remember two years ago, when you. You told me that your doctor said up wouldn’t.
Get any taller. Right! Proved them wrong You did. This is the first day of Camp Twitch and Shout. It’s a oneweek camp for kids with Tourette Syndrome that come from all over the country to be here and almost everyone here, camp counsellors included, has Tourette’s. A lot of these kids at camp, they don’t know anyone else with Tourette’s. That’s the thing that helps the most, is just knowing that other people have gotten through it. This boy is nervous, and he’s ticking. Gabe is an 11yearold who has just been diagnosed.
He has never met another child with the syndrome before. His mother, Casey, made sure that Gabe’s name was first on the list when camp registration opened a few months ago. You really wanted him to go, is that true I did. Why I think that’s the place where I don’t have to worry about what other people think. Do you worry about what other people think a lot Yeah. Not a whole, whole lot, but I think I think I do worry a pretty good bit. Within five minutes, Gabe has made his first friend.
He’s my first friend here. You’re right, yes. What’s your name son Zachary. It’s hard to imagine that this is the first friend Gabe has ever had who can truly understand his syndrome. Meal time with almost 200 people with Tourette’s, a kind of organised chaos that has to be seen and heard to be believed. Hard to believe, but Ely’s handstands, a tick and a popular one at that. That’s an awesome tic. Thank you. Probably the coolest thing ever. Ely’s mom tells me the less popular one of his ticks is he used to yell Bomb at airports.
I have also seen backflips and all kinds of other contortions. We do all kinds of things, like, pounding on the tables. Talking loud. It’s really loud, is it This is the moment I meet Cole Johnson. He’s one of Zach’s best friends. The first year we came here, like, I was just bonded with the friends. They had Tourette’s, like me. He makes it almost impossible to film anything but him. He hyperactively jumps in front of my lens. Honestly, I tried to avoid him. Hello! Hey! I’m just eating lunch! Hey! Bipolar! Bipolar! Bipolar! Stop hurting people. What.
The fuck That’s what she said. Pretty soon, camp is cartoonish chaos, ticks can be, in a sense, contagious. So, all it takes is for one of the kids to start ticking and the ticks build like feedback in a circuit. What the fuck, Jack More often than not, you’ll find Cole at the centre of it all. How you going today, Cole I’m pretty good. Unlike Zach, whose ticks are almost always obviously ticks, it can be very hard to separate Cole’s clownishness from his symptoms. Cole, is that a hugging tick or are you just happy to see him.
Both. I think he likes it that way. To have the freedom here, um, to play in a group that loves them, but then every day you’re not always huggy, but for some reason you get here and it’s the culture and it’s just the way it is and you just fold right in. Angie’s right. I find myself caught up in it. You’re kind of the funniest guy around. Is that right Yep. Are you proud of that Yep. What’s your best joke Knock, knock. Who’s there Britney Spears. Knock, knock.
Who’s there Britney Spears. Who’s there Oops, I did it again. Do you get it His complex neurological condition is not the only hard reality that life’s handed Cole. I have something to show you, this is a blanket made out of my mom’s shirt. It’s to remember her. She passed away a while ago to cancer. I’m really sorry, Cole. His mother, Heather Johnson, helped get the camp going and this is the first year that she’s not here with Cole and it’s clear that, at some level, he blames himself for her death.
Did that have an impact on your Tourette’s Yeah. What impact did it have I started taking. School. I would, um. It has caused my anxiety to go up. Stress. Rage. ‘Cause I’m I think it’s my fault. Why would it be your fault I don’t know. I just sometimes I think that. Do you think that’s. Do you think that’s a product of the anxiety disorders that come with the Tourette’s Um, yeah. That sucks. I know. I have ADHD, OCD, Tourette’s, anxiety and auditory processing disorder. That’s a lot to handle.
Yeah. How do you handle it I don’t know. I do what I do best. Make people laugh. It’s true. No matter how bad it gets for Cole and it gets even worse than this. I got you. Heart attack! You got this, man. I know how you feel. We always see him surface with a laugh. He’s back. He’s good now. Our kids are gonna face challenges their whole life. They’re gonna face people not understanding them forever. It’s just there. And, um, they just have to learn how to respond to that.
And they have to learn to use Tourette’s not as an excuse but as an explanation. Tourette’s is a neurological, not a psychological, syndrome but almost everyone with Tourette’s also has some combination of attention deficit hyperactivity disorder, obsessive compulsive disorder, a sensory processing problem. These related neurological disorders are called comorbidities, and they are, in some ways, the worst part of all these complex symptoms. They’re harder to deal with than the actual ticks and the actual Tourette’s themselves. Your ticks are kind of they’re there, people learn them, they get used to them. But I think.
There’s more of an internal struggle that goes along with the ADD, the ADHD, the OCD, the sensory issues. Those are the things that work a little more internally and I think they are more of the fuel that drives a lot of the ticks. Many of the campers’ OCD dictates how they physically interact with each other. A friend’s touch has to happen in a precise way or a set number of times. One of Zach’s OCD issues is that he experiences physical pain when he hears or sees what he calls the number.
Between two and four. When his friend Mario taps him three times, you can see Zach take Mario’s hand to show him the right way, to tap his back four times. Well, I can’t even pretend to really understand these kinds of needs. Mario understands. It’s like none of us care what, like, we’re like the same. We don’t really care. Yeah. I have something to say to the camera. Well, you can say it. I’m right here. OK. Um, hey. Ladies in Australia, I’m single! Yeah, man! That’s hilarious. Alright, Cole. Alright, man.
They’ve only met a few days ago, but they share so many of the same ticks that it may be that only they can really understand each other. Like Zach, Mario’s ticks can be a hurricane of destruction. Their friendship is both very moving and very messy. On Wednesday, Zach has one of his paralysis ticks, and it lasts for hours. My whole body goes like a noodle, you can pick up your arm and it like, flops back down. And on Thursday, Mario catches it like a cold. How much can you move right now.
My head and my neck. That’s all. And, Zach. Yeah Why are you hanging out Because I had a loose tick yesterday. So, I want to stay with him, because I know what it’s like. Do you think you can make friends here Oh, yeah. Is Zach a friend Mmhm. No! I’m told this is so common that the camp staff have to warn parents in advance that their children might come home with new ticks. No. No. There are more boys at camp than girls, that’s because Tourette Syndrome is diagnosed three.
Times as much in boys. But I do spend a good amount of time with Savannah Sherman and her friends. Even when she’s goofing around, in games like this one, she’s a far less chaotic presence than Zach or Cole. I was diagnosed with Tourette’s when I was, like, I was in second grade. So, that would have been eight or seven, so I have had it for I have known I had Tourette’s for a while now. With almost 10 years of experience with her Tourette’s, Savannah’s a veteran at managing.
Her ticks and symptoms and camp has played a role in that. They appear so fragile and here, the symptoms of anxiety and OCD, we get it. We see it, but we can challenge it a little bit. You know Um, kids have got to develop some resilience. The girls seem to be a lot more physically controlled. But they are very, very vocal. Love you! I love you! Whoo, whoo, whoo! Yeah, yeah, yeah, love you! Shut up. I love you. Go away. What you’re hearing is what the girls call a tick argument. Tick arguments seem to have.
A theme. Mom, shut up, I love you, is a common one with this group. Mom! Mom! Whoo, whoo, whoo! Stop. Ticking arguments it’s like when you tick, like I said, like, it sets something off and you have to tick back. And I guess it’s just like your body is forcing you to say it, you know Like, you can’t help it. It’s just like a ticking argument. But the boys and the girls do come together for the week’s big nighttime event. Tonight is the talent show. This camp is probably the only place where these kids are seen as.
More than just a collection of their symptoms. Although it hurts I’ll be the first. Here, they’re a singer or an artist or a comedienne. Friends of mine are like. Desperado, why don’t you come to your senses You’ve been out. As a talent, Tony’s speedstacking cups might not seem like much, but Tony is so shy he’s barely spoken until now, let alone got up on stage. That’s not lost on Savannah. Everyone is wondering what Cole will do. I’m gonna have Cole come on up. Oh, my God.
And to watch this kid who, an hour before, was so tied in knot that is he couldn’t stand, to watch him do the robot..it’s honestly one of the coolest things I ever saw. Thank you, Camp Twitch and Shout, for supporting us. It felt great. That’s helped my confidence a lot. And did you know that’s what you were gonna do Yep. Were you trying to be funny or were you trying to be serious In what When you were dancing the robot I was.trying to entertain them. So, I don’t know what that means to you. But, to.
Me, it means..I can really make people smile. You’ve got such a big personality, you know Yeah. And you’ve got all this smokescreen in the way. Like, you’ve got all this stuff in between your personality and the world. Yeah. You know, I. I put a gas mask on to go through the smokescreen. That means that all these problems that I’ve come across, I brush them off and if it creates new problems, I take care of it. Do you think people come out of this camp changed Yeah. Changed and moved. And inspired to do what they thought they could never do.
The week is almost over and Zach’s acting differently. I can tell he’s worried. I overhear him saying he’s afraid to go home tomorrow. I have a violent tick that, like, I hurt my family. I hate it. You hate it ‘Cause I punch them and stuff. It sucks. I now understand that Zach’s violent tick is only directed at his family, they are they are the trigger, so at camp he’s been free of it. Do you miss your family Yeah. So, it’s pretty complicated feeling Yeah. Like, I want to go home but I don’t want to go home, because I don’t want to hurt.
Them. But tomorrow everyone goes home. I check in with Gabe, he says he females different than he did just a week ago. I feel happier. Because, um, I made a lot more friends and it’s been fun at camp and who doesn’t like camp! You said it was hard making friends at home Did you find it hard making friends here There’s a dance tonight. Are you gonna invite a girl to the dance Not yet. Are you going to Maybe. Do you have one in mind What’s her name.
I can’t tell you. You can’t tell me Come on, you can tell me. I won’t tell anybody. Yeah, you will. It’s on camera! Zach’s girlfriend back home told him he can take a date to the dance. He doesn’t want to but when I see him all dressed up, I push and ask whether he has any big plans. Any kissing behind the gymnasium Yes! No. No. Which is true Yes! No. No. Yes! Shut up, douche bag! The dance is the week’s big event and everyone’s excited. That moment, I slow it all down and.
Watch these happy kids just be happy kids. Looking over at Mario and Zach, I want tonight to be my up ending to the story, but Zach, he just wasn’t gonna get that kind of ending. On the last morning, the campers are all emotional, but each in their own way. Tony, the shy kid who stacked cups at talent night, has just slipped Savannah and the girls a note. Kiss him on the cheek. So I guess he wrote us this letter and said, Thank you, girls, for kissing me and cheering for me at the talent show. You’re pretty..
That last bit, in red, stands out like a tick. The families will be here soon and the whole camp moves towards the gym for the closing ceremony. I find Zach’s family waiting for him and his mother heads straight for his cabin. Dude! Dude! Hey, Zacher. Hi, honey. Mom! Mom is used to that. We won’t leave you. Zach’s ticking has once again left him totally paralysed. You can breathe. Come on. I got ya. Out on your belly. OK, let’s go. See ya! Mario, you like his mom and dad.
Are you Mario Hi, Mario. Hello. At home I would put him on our hand truck. I know that at this camp, ticks like this are treated just like something normal, but I also know that Zach didn’t want to have to be carried in to the closing ceremony. Are you OK Camp organisers, like Trisha Kardon, say their thankyous and the kids are handed back to the parents. Hi. Parents, thank you so much for giving your kids to us this week, we’ve had an amazing week and I’m very, very proud of them, very proud of them.
The camp song plays. The world’s greatest. Zach’s favourite song. He’s got a poster of the song title beside his bed at home. For all his ticks and rage, I hadn’t seen Zach cry. Camp is over, everyone’s leaving and Zach needs to get out of the way and that’s when the thing Zach’s been dreading happens, Zach ticks and hits his mom and I know Zach is about to be torn up inside. Thank you for everything! I had a great camp. What’s your last thought about Tourette’s Pain in the ass at times. Pretty much. Bye.