Zack, Mario and Cole have severe Tourette's... often misunderstood, Dateline follows them to a camp where they find they're not alone.
Airdate: 
Tuesday, August 20, 2013 - 21:32
Channel: 
SBS One

Zack, Mario and Cole are three friends who share a remarkable bond.

They're among the most severe cases of Tourette Syndrome in the United States, suffering a range of involuntary verbal and physical tics and sometimes violent outbursts.

The neurological condition is often deeply misunderstood by society, leading to feelings from sufferers that they don't fit in.

But Dateline's Aaron Lewis follows the boys to a place they can truly be themselves.

It's the annual Camp Twitch and Shout, a special summer gathering for children with Tourette Syndrome, between the ages of 7 and 17.

So why is this camp so special? And what does it mean to the young people who take part?

Follow their journey in a powerful story that is both heart breaking and heart warming.

WATCH - Click to see Aaron's report.

UPDATE - Dateline continued to follow Zack's story after this report... Fighting Chance in March 2014 revisited Zack when his condition had worsened and the family faced the prospect of drastic surgery. And in September 2014, Zack's Battle followed him through that surgery and then back to Camp Twitch and Shout.

TOURETTE'S FACTFILE - Find out more about the syndrome and how to get local advice and support from the Tourette Syndrome Association of Australia.

Watch

Tourette's Factfile

The Tourette Syndrome Association of Australia provides local information and support. Here are some of its facts about the condition"¦

- Tourette’s is a neurological disorder that usually starts between the ages of 2 and 21 and lasts throughout life. People with Tourette’s have a normal life span.

- It’s characterised by rapid, repetitive and involuntary muscle movements and vocalisations called 'tics’, which can vary from simple twitches and noises, to more severe actions such as hitting and biting or the involuntary utterance of obscene words.

- Typically tics increase as a result of tension or stress and decrease with relaxation or concentration on an absorbing task. The severity of symptoms can also vary generally over time.

- People with Tourette’s are more likely to also have other behavioural problems, such as Obsessive Compulsive Disorder (OCD) or Attention Deficit and Hyperactivity Disorder (ADHD).

- The cause has not been definitively established, but it seems to stem from the abnormal metabolism of a brain chemical called dopamine.

- Studies suggest that Tourette’s is usually, but not always, inherited. The severity can vary considerably between generations and the disorder may not be evident at all in some people.

- It’s named after 19th Century French neurologist Dr George Gilles de la Tourette, who was the first to specifically identify the syndrome.

- There is no cure, but medication can control some of the symptoms in some cases. There is currently no medication that can eliminate all symptoms.

- Some sufferers see a marked improvement in their condition in their late teens or early twenties.

Follow the links above for more information, plus the Camp Twitch and Shout site has more on the camp in Aaron’s story.

Resources

Transcript

In almost a decade of reporting for Dateline, New York-based Aaron Lewis has filmed so many compelling stories. He's chased Joseph Kony through the jungles of Central Africa and more recently reported on the Boston bombing, to name just a couple. But Aaron tells us his latest assignment moved him more deeply than any other. He wanted to portray the lives of those living with Tourette Syndrome, a disorder which produces uncontrollable physical and verbal tics, but Aaron had no inkling he would form such a close bond with two such astounding teenagers. Here's his story.

REPORTER: Aaron Lewis

CARL LAMB, ZACK'S FATHER: He's very strong. Very strong.

Zack 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 tic is compulsively directed at his family. He hits them, especially his father, Carl.

CARL LAMB: 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.

Zack tries to redirect his rage tics. The walls of his house have taken some of the worst of it.

ZACK LAMB: 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.

REPORTER: You actually have to feel pain for the tic to go away?

ZACK LAMB: Yeah, pretty much. Yeah, these two, I broke...

REPORTER: Recently or a long time ago?

ZACK LAMB: Mmm, about a few months ago, maybe.

REPORTER: Are they feeling OK?

He hates that he's become a danger to his family.

ZACK LAMB: I feel bad that I hurt them. Yeah.

REPORTER: Have you ever really hurt them?

ZACK LAMB: 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.

REPORTER: What do you think would happen to you if you didn't have the family that you have now?

ZACK LAMB: 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."

REPORTER: Is that your worst fear?

ZACK LAMB: Yeah, being separated from my family.

Some children with Tourette's have simple tics. Not Zack, his tics are wildly unpredictable. Beyond the rage tics, there's a form of spontaneous full-body paralysis. To various kinds of compulsive self-harm. The cursing.

ZACK LAMB: Fuck you, fuck you, fuck you! Sorry!

MARY LAMB: That's OK.

To the strangest feats of tormented acrobatics, none of it voluntary, most of it painful.

MARY LAMB: Are you OK?

ZACK LAMB: Yeah.

Zack's single worst tic 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.

MARY LAMB: 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 broken-hearted by it, but he doesn't have control over it. Not too hard.

The first thing anyone learns about Zack is that he has Tourette's. The second thing anyone learns, if they're paying attention, is that he's one of the sweetest 14-year-old boys you're ever gonna meet.

MARY LAMB: OK, call me Mommy Dearest!

He's quick to show me a photo of his deceased grandfather.

ZACK LAMB: Here's my grandfather. I loved him a lot.

REPORTER: You guys were really close?

ZACK LAMB: 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.

REPORTER: 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 ticcing 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.

REPORTER: What's the worst thing about Tourette's?

ZACK LAMB: Um, sometimes it's hard to make friends, 'cause, like, they don't know what's going on with me.

REPORTER: You have a girlfriend now?

ZACK LAMB: Yeah.

REPORTER: Does she mind when you tic?

ZACK LAMB: Mm-mm. She likes me for who I am.

MARY LAMB: I haven't been to the Villager forever.

Zack 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 Zack feels like he can really be himself.

CALEB HARRILL, CAMP LOGISTICS COORDINATOR: I remember two years ago, when you... You told me that your doctor said up wouldn't get any taller. Right!

ZACK LAMB: Proved them wrong

CALEB HARRILL: You did.

This is the first day of Camp Twitch and Shout. It's a one-week 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.

CALEB HARRILL: 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 ticcing. Gabe is an 11-year-old 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.

REPORTER: You really wanted him to go, is that true?

GABE: I did.

REPORTER: Why?

GABE: I think that's the place where I don't have to worry about what other people think.

REPORTER: Do you worry about what other people think a lot?

GABE: 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.

GABE: He's my first friend here.

WOMAN: You're right, yes.

REPORTER: What's your name son?

ZACKARY: Zackary.

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 tic and a popular one at that.

BOY: That's an awesome tic.

ELY: Thank you.

BOY: Probably the coolest thing ever.

Ely's mom tells me the less popular one of his tics is he used to yell "œBomb" at airports.... I have also seen backflips and all kinds of other contortions.

GABE: We do all kinds of things, like, pounding on the tables. Talking loud.

REPORTER: It's really loud, is it?

This is the moment I meet Cole Johnson. He's one of Zack's best friends.

ZACK LAMB: 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.

COLE JOHNSON: 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, tics can be, in a sense, contagious. So, all it takes is for one of the kids to start ticcing and the tics build like feedback in a circuit.

COLE JOHNSON: What the fuck, Jack?

More often than not, you'll find Cole at the centre of it all.

REPORTER: How you going today, Cole?

COLE JOHNSON: I'm pretty good.

Unlike Zack, whose tics are almost always obviously tics, it can be very hard to separate Cole's clownishness from his symptoms.

REPORTER: Cole, is that a hugging tic or are you just happy to see him?

COLE JOHNSON: Both.

I think he likes it that way.

ANGIE EBEL, NURSE: 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.

REPORTER: You're kind of the funniest guy around. Is that right?

COLE JOHNSON: Yep.

REPORTER: Are you proud of that?

COLE JOHNSON: Yep.

REPORTER: What's your best joke?

COLE JOHNSON: Knock, knock.

REPORTER: Who's there?

COLE JOHNSON: Britney Spears. Knock, knock.

REPORTER: Who's there?

COLE JOHNSON: Britney Spears.

REPORTER: Who's there?

COLE JOHNSON: Oops, I did it again. Do you get it?

His complex neurological condition is not the only hard reality that life's handed Cole.

COLE JOHNSON: 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.

REPORTER: 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.

REPORTER: Did that have an impact on your Tourette's?

COLE JOHNSON: Yeah.

REPORTER: What impact did it have?

COLE JOHNSON: 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.

REPORTER: Why would it be your fault?

COLE JOHNSON: I don't know. I just - sometimes I think that.

REPORTER: Do you think that's... Do you think that's a product of the anxiety disorders that come with the Tourette's?

COLE JOHNSON: Um, yeah.

REPORTER: That sucks.

COLE JOHNSON: I know. I have ADHD, OCD, Tourette's, anxiety and auditory processing disorder.

REPORTER: That's a lot to handle.

COLE JOHNSON: Yeah.

REPORTER: How do you handle it?

COLE JOHNSON: 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.

CAMP COUNSELLOR: I got you.

COLE JOHNSON: Heart attack!

CAMP COUNSELLOR: You got this, man. I know how you feel.

We always see him surface with a laugh.

CAMP COUNSELLOR: He's back. He's good now.

TRICIA KARDON, PRESIDENT BOARD OF DIRECTORS AND NURSE MANAGER: 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 co-morbidities, and they are, in some ways, the worst part of all these complex symptoms.

JASON HURD, ASSISTANT DIRECTOR: They're harder to deal with than the actual tics and the actual Tourette's themselves. Your tics 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 tics.

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 Zack'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 Zack 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.

MARIO: It's like none of us care what, like, we're like the same. We don't really care.

ZACK LAMB: Yeah.

COLE JOHNSON: I have something to say to the camera.

REPORTER: Well, you can say it. I'm right here.

COLE JOHNSON: OK. Um, hey. Ladies in Australia, I'm single!

MARIO: 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 tics that it may be that only they can really understand each other. Like Zack, Mario's tics can be a hurricane of destruction. Their friendship is both very moving and very messy. On Wednesday, Zack has one of his paralysis tics, and it lasts for hours.

ZACK LAMB: 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.

REPORTER: How much can you move right now?

MARIO: My head and my neck. That's all.

REPORTER: And, Zack.

ZACK LAMB: Yeah?

REPORTER: Why are you hanging out?

ZACK LAMB: Because I had a loose tic yesterday. So, I want to stay with him, because I know what it's like.

REPORTER: Do you think you can make friends here?

MARIO: Oh, yeah.

REPORTER: Is Zack a friend?

ZACK LAMB: Mm-hm. 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 tics.

COLE JOHNSON: 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 Zack or Cole.

SAVANNAH SHERMAN: 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 tics and symptoms and camp has played a role in that.

TRICIA KARDON: 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.

GIRLS: 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 tic argument. Tic arguments seem to have a theme. "Mom, shut up, I love you," is a common one with this group.

GIRLS: Mom! Mom! Whoo, whoo, whoo! Stop.

SAVANNAH SHERMAN: Ticcing arguments - it's like when you tic, like I said, like, it sets something off and you have to tic 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 ticcing argument.

But the boys and the girls do come together for the week's big night-time 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.

BOY (Sings): Although it hurts # I'll be the first... #

Here, they're a singer or an artist or a comedienne.

GIRL: Friends of mine are like...

BOY (Sings): Desperado, why don't you come to your senses? # You've been out...

As a talent, Tony's speed-stacking 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.

CAMP COUNSELLOR: 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.

CAMP COUNSELLOR: Thank you, Camp Twitch and Shout, for supporting us.

COLE JOHNSON: It felt great. That's helped my confidence a lot.

REPORTER: And did you know that's what you were gonna do?

COLE JOHNSON: Yep.

REPORTER: Were you trying to be funny or were you trying to be serious?

COLE JOHNSON: In what?

REPORTER: When you were dancing the robot?

COLE JOHNSON: 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.

REPORTER: You've got such a big personality, you know?

COLE JOHNSON: Yeah.

REPORTER: And you've got all this smokescreen in the way. Like, you've got all this stuff in between your personality and the world.

COLE JOHNSON: 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.

REPORTER: Do you think people come out of this camp changed?

COLE JOHNSON: Yeah. Changed and moved. And inspired to do what they thought they could never do.

The week is almost over and Zack's acting differently. I can tell he's worried. I overhear him saying he's afraid to go home tomorrow.

ZACK LAMB: I have a violent tic that, like, I hurt my family. I hate it.

CAMP COUNSELLOR: You hate it?

ZACK LAMB: 'Cause I punch them and stuff. It sucks.

I now understand that Zack's violent tic is only directed at his family, they are they are the trigger, so at camp he's been free of it.

REPORTER: Do you miss your family?

ZACK LAMB: Yeah.

REPORTER: So, it's pretty complicated feeling?

ZACK LAMB: 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.

GABE: I feel happier. Because, um, I made a lot more friends and it's been fun at camp and who doesn't like camp?!

REPORTER: 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?

GABE: Not yet.

REPORTER: Are you going to?

GABE: Maybe.

REPORTER: Do you have one in mind? What's her name?

GABE: I can't tell you.

REPORTER: You can't tell me? Come on, you can tell me. I won't tell anybody.

GABE: Yeah, you will. It's on camera!

Zack'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.

REPORTER: Any kissing behind the gymnasium?

ZACK LAMB: Yes! No. No.

REPORTER: Which is true?

ZACK LAMB: 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 Zack, I want tonight to be my up ending to the story, but Zack, 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.

SAVANNAH SHERMAN: 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 tic. The families will be here soon and the whole camp moves towards the gym for the closing ceremony. I find Zack's family waiting for him and his mother heads straight for his cabin.

MARY LAMB: Dude! Dude! Hey, Zacker. Hi, honey.

ZACK LAMB: Mom!

MARY LAMB: Mom is used to that. We won't leave you.

Zack's ticcing has once again left him totally paralysed.

MARY LAMB: You can breathe. Come on. I got ya. Out on your belly. OK, let's go. See ya!

REPORTER: Mario, you like his mom and dad?

MARY LAMB: Are you Mario? Hi, Mario.

MARIO: Hello.

MARY LAMB: At home I would put him on our hand truck.

I know that at this camp, tics like this are treated just like something normal, but I also know that Zack didn't want to have to be carried in to the closing ceremony.

MARY LAMB: Are you OK?

Camp organisers, like Trisha Kardon, say their thank yous and the kids are handed back to the parents.

TRICH KARDON: 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. Zack's favourite song. He's got a poster of the song title beside his bed at home. For all his tics and rage, I hadn't seen Zack cry. Camp is over, everyone's leaving and Zack needs to get out of the way and that's when the thing Zack's been dreading happens, Zack tics and hits his mom and I know Zack is about to be torn up inside.

MARY LAMB: Thank you for everything!

ZACK LAMB: I had a great camp.

REPORTER: What's your last thought about Tourette's?

ZACK LAMB: Pain in the ass at times. Pretty much. Bye.

COLE JOHNSON: I hate to see all them go but all good things come to an end. Cue dramatic music!

ANJALI RAO: The remarkable kids dealing with Tourette's. Aaron Lewis there, filming and reporting. Go to our website to leave your thoughts on that story. Plus, there's more about Tourette's and the support available in Australia at sbs.com.au/dateline.


Reporter/Camera/Editor
AARON LEWIS


Producer
AARON THOMAS


Researcher
DONALD CAMERON

Original Music Composed by

VICKI HANSEN

20th August 2013