What Makes Me Tic My Life

You ready?

We sniff, jerk, blink and swear.

BLEEP. BLEEP.

But we just can't help it.

It's me, hi.

I'm Grace, I'm 14.

I've got Tourette's.

I've got a big show coming up.

I'm hoping my Tourette's won't get in the way.

Nice deep breath.

Nice and slow.

Hello! I'm Rupert, and I'm 12.

I've got Tourette's Syndrome, too.

HE GRUNTS

I'm about to start the therapy that I hope will change my life.

Don't roll those eyes at all.

Hello.

I'm Connor.

My Tourette's makes me scream and swear.

BLEEP, BLEEP.

So I usually just stay at home.

But I know I need to force myself to get out more.

-I have to get through it.

-BLEEP.

Just stop my fears and just do it.

I want everyone to understand what life is like

with Tourette's Syndrome...

-ALL:

-And what makes me tic.

HE GRUNTS

One morning, about six months ago, I woke up gasping.

I had no idea what was going on.

The doctor said I had Tourette's Syndrome

and that the gasp was a tic.

HE GRUNTS

It's like a cycle.

It's, like, feel the urge,

make the tic to send the urge away.

A few minutes or however long it takes,

the urge comes back, starts again.

A tic is basically when a bit of your body, like, does something,

like, you can't help it.

A tic feels like something that you have to do,

like when you have to blink.

Like, you know when you have

that urge to scratch or that urge to sneeze?

It's like that.

Having Tourette's Syndrome means you do lots of tics.

And it can be annoying.

My mum and dad have heard about a treatment where some people

can learn to control tics some of the time.

So I'm going to London to find out about it.

My Tourette's is bad and I need some help to suppress the tics

so that I don't do them as much.

I'm feeling a bit anxious, because...

Well, I don't really know what's going to happen.

But then, I'm excited as well.

Have you had an outbreak of tics in the last week?

That's a tic, so something you can't control.

-No.

-Eye tics, anything?

-Yeah.

-Yeah.

-Roaming of the eyes?

-Yeah.

-Yeah.

-What about roaming of the nostrils? Flaring of the nostrils.

-Like this?

-Yeah.

-No.

-No? Not that one.

-Sniffing?

-Yeah.

HE SNIFFS

This is Dr Tara Murphy.

She's a specialist in Tourette's

and I'm hoping she might have some answers.

What I want you to know is I've heard about those compulsive tics,

-you can definitely treat them.

-Oh, brilliant.

-Sure.

ERP,

exposure response prevention, is exactly the way to treat

-these compulsive tics.

-Oh, OK.

So it's about feeling an urge, and what you'd really like to do

is learn to resist it.

To do ERP,

I will sit quietly for half an hour a day and try not to do my tics.

It sounds tough, but if I practise enough, hopefully,

I will learn to control the constant urge to tic.

Keep working on it, then the feeling

-of wanting to do it will go away.

-Yeah?

'Dr Murphy tells me about group therapy for children

'with Tourette's.'

You'd like to come to the group treatment?

It would be mainly boys, but there will be a girl or two there,

-as you know Tourette's Syndrome affects mostly boys.

-Yes.

That's eight sessions where we learn about tics.

Do you like that idea?

I think I might like to try it.

I still haven't met anyone else who has Tourette's.

I'd like to see how other people

with Tourette's deal with Tourette's.

I think it went pretty well.

She knows what she's talking about and she can tell me things that I

didn't know about Tourette's before.

Everybody has something that makes them who they are,

and Tourette's makes me who I am.

I can happily say, I've got Tourette's Syndrome.

I'm Grace, I'm 14.

My main tics are rolling my head, sniffing and wrinkling my nose.

I can feel when a tic is coming on

and I've learnt many ways to deal with them, but it's hard work.

I can suppress one major tic for lots of smaller tics.

So, if I need to swing my arm,

I can just tense my muscles and that will get it out of the way.

I show what I want to show, because I feel that if I showed me ticcing,

punching myself, swinging my arm, I would get judged,

because I'm doing these strange movements.

I do hide them, maybe more than I should,

because I am a very self-conscious in a lot of ways.

My passion is musicals and drama, and on Saturdays,

I rehearse with my drama group and my dad normally takes me.

So, are you ready for rehearsals today?

-Yeah.

-How many more have you got before your show?

I think we've got maybe two or three more.

Do you find that being on the stage, you're not ticcing as much?

Before I go on stage, I'm ticcing like crazy, because I'm nervous,

and when I'm nervous, I get really, really ticcy.

Will it be worse when you know that your parents are sitting

-in the front row of the show?

-Yeah!

-Are you front row?

-Oh, I intend to be.

-Aw.

For the opening pieces, I'm quite a main part in the dance,

and that is so exciting,

because they don't normally choose me for big things.

OK, well done, guys. Excellent.

Them knowing that I am capable of doing this, it meant a lot.

I'm playing the piano in the showcase.

# Flame on, burn, desire

# Love with tongues of fire

# Purge the soul

# Make love your goal. #

Beforehand, I'm ticcing like crazy, because I'm nervous.

And when I get nervous, my hands go stone-cold.

And playing the piano with cold hands isn't easy.

I just hope, when the big night comes,

the nerves and the tics won't get the better of me.

APPLAUSE

Hello!

Dr Murphy has told my mum and me how to practise ERP,

so we've been doing it every day, and it's really hard.

So no eye rolls in ten minutes, OK?

-OK.

-Go!

My mum sets a timer on her phone and I try not to do a tic

for as long as I can.

Are you having any urges at the moment?

-No.

-You're not?

Any urges in your eyes?

No. My mum or my dad might try and talk about the urge,

cos that usually makes it worse.

I've got a bit of an urge in my eye, just popped up.

Right, don't roll those eyes at all.

So you're going to push it down, the urge?

-OK.

-Are you pushing?

-Mm-hm.

And pushing... Where's the urge now?

Strong or weak?

-Strong.

-Is it?

-Yes, but I'm going to try...

-Just push.

And when he pushes the urge down, his eyes close a bit.

Has it gone yet?

-No.

-It is strong?

Yes.

Good boy, keep pushing down.

And this is a strong one, isn't it?

I can see.

-Has it gone yet?

-No.

OK. Push, push, push.

You're doing really well, Rupert.

Don't roll those eyes.

Mm-hmm.

-Did it.

-Did it?

Has it gone? Good boy.

My life with Tourette's is...

Glorious!

-BLEEP.

-Sorry,

-BLEEP.

Sometimes, it's absolutely hilarious.

BLEEP, BLEEP, BLEEP.

I have a lot of swearing tics and, like, screaming, like...

-HE SCREAMS

-I hit myself.

I'm making noises.

But other than that, that's it.

And nodding. That.

Yes! Through the post has come my new tracksuit.

My name's Connor and I'm 13.

Most people who have Tourette's Syndrome

have other conditions too.

I have anxiety.

Does it smell good then, yeah?

It's called separation anxiety, where, like,

you can't really go away from your parents, you just think that

they're never going to come back or they going to die

or going to leave you. That's why I can't really go out.

HE SCREAMS

BLEEP, BLEEP, BLEEP,

BLEEP, BLEEP, BLEEP.

(Sorry.)

It's a combination of my Tourette's and my anxiety which stops me

from doing any after-school clubs,

unlike my brother, Ryan.

Do you ever think about joining clubs?

Quite a lot. But it's just hard.

You know, with anxieties and stuff, it's just a bit...

Annoying. It kind of takes over your life.

-Do you ever sort of feel left out?

-Just a little bit, yeah.

I need a card, but it doesn't want to show up.

Do you think it'd be easier if you join a club with me in it?

Your big brother coming in a club with you would just be like, nah.

How do you feel, living with someone with Tourette's?

Well, it can be quite worrying, but also funny.

It's really hard to, like,

have one sort of emotion and feeling about it.

-You've won, haven't you?

-Rummy!

How did you get rummy?

Victory dance.

I would love to go out sometimes,

but I've got to just work towards it,

so you've just got to take baby steps and then progress

to bigger steps, and then finally you're there.

You definitely can't see me?

Yeah, that big blue thing right there.

I love playing video games with my friend Will.

WILL YELLS

Ready, three, two, one...

Blast off!

But I haven't seen him since I started doing my ERP therapy.

What was your first Tourette's symptom? Was it...

-HE GRUNTS

-..that one?

Yeah, that's it.

-Yeah.

-Wait. Do you want to be an angel, do you want a jet pack,

-or whatever?

-I'm guessing you're getting very,

very good at controlling your Tourette's?

I hope so.

Do you think you will ever get rid of Tourette's or will you

-have it forever?

-No.

I will have Tourette's for my whole life,

but hopefully I can control it enough

where it won't be very prominent.

Oh.

But I still do get looks from people, like, "Oh, what's he doing?"

People aren't a fan of difference.

They like normal.

Guess so.

# Sorry, I ain't got no money I'm not tryin' to be funny

# But I left it all at home today. #

If my friends were to describe me,

they'd probably describe me as caring, weird and funny.

# Ain't got no money I'm not trying to be funny... #

This is my best friend, Saskia.

She's always there for me.

We don't go to the same school any more,

but we go to drama club together.

Are you excited for the showcase?

I'm very excited, but I'm a bit nervous.

They're so much stress.

Do you know my hands go cold when I'm nervous?

-Yeah, especially when you're playing keyboard.

-Yeah, exactly.

So if I'm... If my hands are cold and I'm ticcing,

that's probably not going to end very well, but it makes me who I am.

-Mm, yeah.

-Like, if I didn't have Tourette's,

-then I wouldn't be...

-Unique.

Exactly! Like, you've got big ears, I've got Tourette's!

-THEY LAUGH

-Thanks(!)

Well, we've all got our own thing.

When you're ticcing a lot, what calms you down?

Probably Luna.

I know it sounds sad,

but she is, like, my best friend,

apart from you, obviously!

-Thank you.

-And I feel like we've got a special bond.

There we go. Nice one.

Have you ever seen me ticcing and go,

"Was that a tic or just a weird movement?"

Yes. We were doing dance or something, and then...

-you were doing your arm thing?

-Yeah.

-And I was like...

"That's not part of the dance!"

"Did we do that in the dance, or...?"

And I was like, "Oh, no, she must be ticcing."

I was having dinner with my auntie and I threw a sausage at her,

because it was on the end of my fork and...

-That's hilarious!

-Yeah, she was like,

"Was that a tic, or did you mean to do that?"

You can get away with it,

-throwing sausages are people.

-I know, I can! Yeah.

I can get away with a lot of things.

Some days you get lucky and you don't tic,

but some days you just tic,

some days you just tic through the whole amount of the day.

It's kind of unpredictable, and the days that I have

like, my downs, obviously,

it's really constant and it happens every second.

Hiya.

It's Thursday and I've woken up

with a really bad neck tic.

Which is this.

Like that.

Just over and over again.

It really hurts.

It's really painful...

..to constantly do that.

If you did your ERP, would that help you stop the neck tic?

-SOBS:

-I don't know.

I don't want to see you like this.

It really hurts, my neck.

OK.

Well, I'll have to phone the school then and say you can't go in

because of your tic today.

OK.

My neck is better now, it's the end of the day, it's better. Good.

Three, two, one, go!

I don't like to miss school, but the fact is,

I still have bad days even with therapy.

But then my sister Prudence is there to cheer me up.

When you actually got diagnosed properly,

I think it was a massive shock to all of us, and especially to me,

as we're so close as brother and sister.

Is it hard for you to explain to people what you've got?

I feel, like, over time, I've gotten a lot better at explaining it.

You think?

Yeah. I think I can tell people

a lot easier now and help to make them understand.

Yeah.

It's life-changing for you.

And even though you're so good at controlling,

you do have peak times where you're

not the best at controlling.

-You know?

-Yeah.

And you have helped me out a lot.

You've been there for me, which really helps me.

If you ever need me, then I'm always there.

-Always.

-Yeah.

My drama showcase is just days away,

and things are beginning to get on top of me.

It's very stressful at the moment.

And my tics have been really not helping.

I've been really, really ticcy.

There have been quite a few jokes or comments

or sneers about them at school.

SHE SIGHS

It's just not the best of times at the moment.

But the good news is,

I can always rely on my friend Saskia to cheer me up.

Reasons why I love you.

Who gave it to you?

This girl!

I'm too cute. It was one of the days

when you were just feeling really bad

and I was at home, and I was like, "I have an idea."

And I just thought it would be nice.

I think it's really cute, so, thank you.

"You make me feel at home in because you practically live..."

You are my best friend!

-That's my favourite.

-And then I drew a little stickman!

"You are fun," with a smiley face and a weird nose!

It's nice to know that she's there,

with her little message that she wrote to cheer me up.

-I do read these when I'm sad.

-Aw!

As part of my treatment at Great Ormond Street,

my mum's been taking me to London for group therapy.

All the children in the group have Tourette's.

It's a place to share experiences and learn to handle our tic.

We've been working on tic blockers, haven't we?

OK.

So, would anybody like to talk a bit about what tic they had

that they've worked on?

A tic blocker is an alternative action that you do

instead of a big or noisy tic, and it takes some practice.

I've got actually four tic blockers,

and one of them stops two.

It's just you have to keep it in really far back.

So your tic blocker is putting your chin far back?

-Yes.

-Is that right? Well done.

And are you doing that tic blocker now?

Cos I can't see the tic now.

Good job! OK.

And do you think knowing good tic blockers

-helps you to know when the tic is about to come?

-Yeah.

And then you can do your tic blocker

and hopefully control at least some of your tics.

I have a toe crunching one.

Toe...toe crunching?

-Yeah.

-My tic blocker is to point my toes upwards.

Yeah.

Rupert, what tic have you been working on?

My throat noise tic.

And my tic blocker is that I will breathe in through my mouth

and slowly and then out from my mouth slowly.

But I have to make sure that I don't do it too loud.

Because breathing slowly and quietly

is much less socially noticeable than doing a squeak, isn't it?

-Yeah.

-That's really important one. Thank you for that.

We're coming to the end of our group treatment.

You've been working away on all those tics.

How have you found the group treatment?

When you see other people ticcing, it's like,

kind of a relief that you're not the only one who's doing those tics.

It's really nice to not feel that you're alone with these tics.

OK, I think you all did really brilliantly.

-Thank you very much.

-Big smiles, that's it! Lovely.

Group therapy was really helpful and it showed me ways to manage my tics

and be more confident about my Tourette's.

And do you know what? I think you are doing amazingly well.

-Thanks.

-Very proud of you.

-Thanks.

HE SQUEALS

I find going anywhere on my own really difficult.

And at school, I worry about ticcing in front of other people.

So for the moment,

I'M taught with only a few others in a special unit run by Mr Rowland.

And I hit the...

Right, so we have to say choo-choo when you land on a station.

-Choo-choo!

-No, you need to say it with enthusiasm, sir.

-I'm sorry. Choo-choo!

-No, no, no...

-That was a bit angry, wasn't it?

-Choo-choo! Was that better?

-Choo-choo!

He's got 400.

He's just on the easiest sum on the Monopoly maths board there.

Inside the unit, everyone's understanding about my tics.

I haven't got the confidence to have lessons in the main school yet,

but Mr Rowland is helping me.

How is your year going, Connor, do you think?

Yeah, it's been all right, I guess.

-Were you ticcing at school in year seven?

-No, not really.

-Why weren't you ticcing at school?

-Cos it was always embarrassing.

I was, like, holding it in, but it made me worse.

What was worse, like, the tics?

-Yeah.

-So then what changed in year eight?

-I don't know.

-You started ticcing, didn't you?

-Yeah, that's it.

-What do you think the reactions were from people

when you started ticcing?

-Surprised.

-Remember that day when you started ticcing in here?

What was the reaction, like, from people that age?

-Funny.

-The first time everyone heard you ticcing here,

you were well like, "Sorry, I've got Tourette's.

"That's the way it is." It is the way it is.

It's easier to learn the mechanisms to cope with it,

have that sentence ready, "Sorry, I've got Tourette's."

So, what do you reckon for next year, then?

-What do you reckon about going back into lessons?

-No.

You say no, but would you like to go back into lessons?

-Yes.

-Yeah.

So I reckon your target for next year

should be to start ticcing in front of everybody in classes.

Yeah, I know.

If I'm doing a tic, nobody really minds about it,

because I already told the class.

Now they know about my tics, it's much easier and way easier.

We can't help it.

And all of us wants to be accepted for who we are.

Like, it's just hard not to be,

I don't know, able to do things.

A lot of the time, it's very difficult and tricky,

but I have to get through it.

-HE SQUEALS

-BLEEP.

Just stop my fears and just do it.

Tonight is the showcase.

My mum, my dad and my grandma are coming.

And I'm so excited to see you guys on stage.

Just go out there and just give it everything, OK?

-One, two, three...

-ALL:

-Whooo!

# The many chances I blew To bring my life to anew

# Clear blue and unconditional... #

The show started and my piano piece is coming up any minute,

but my tics are really bad.

My hands are cold and I'm wondering if I can do it.

My hands are cold!

I'm so scared I'm going to mess up.

SHE SOBS

-You just need to relax.

-Take a break and go outside.

I'm just really scared I'm going to mess up on the piano.

No, you're not, you're not.

Cool down, cos it's going to be really hot behind there, OK?

-Yeah.

-You've done really well.

-Thank you.

-This is really tricky for you, with everything else.

-Yeah.

Nice deep breath. Nice deep breath.

-(OK.)

-OK?

-Yeah.

-OK, are you sure?

-Yeah.

-Only when you're ready.

I'm sorry. I'm just scared it's not going to work.

APPLAUSE

-It's going to be brilliant.

-Seriously, so good.

# Aye

# Mm-mm

# The power of love

# That falls from above

# Cleaning my soul. #

CHEERING AND APPLAUSE

That was great!

Oh, my God.

Had a nervous breakdown.

When I played, my hands were shaking.

But once I did it, I just had a massive smile on my face.

I'm really happy that I did it now.

-Oh, you were so fantastic.

-Thank you.

-I was so proud of you.

-I'm really sweaty!

-You were wonderful.

-Thank you.

That was brilliant, darling, well done.

-Thank you.

-A great Father's Day present.

We've been making this documentary for nearly six months now.

So far, we've not met each other, so we've arranged to meet in Brighton.

I hope Connor can find the courage to come and meet us too.

-Hi, I'm Grace.

-Oh, hi.

-You must be Rupert.

-Yeah.

Hi. So have you been to Brighton before?

No, this is the first time I've actually come here.

I know Rupert's done therapy for his Tourette's Syndrome.

Did it help?

For the longest time,

I just really felt like no-one understood what I was going through.

Yeah, I understand.

Because... I, like...

It's weird. I felt like an alien.

-Yeah.

-It's so weird. Like, everyone else was so different to me.

But then, obviously, I met a lot of people with Tourette's,

and, like, that's reassuring.

With the film, I'm a bit more confident showing my tics.

-Yeah.

-I can't control them a bit better,

which gives you more confidence to go out and stuff.

-Do you like rides?

-Yeah.

Do you like fast rides?

-Yeah.

-Right, let's go around here.

Right, you go on the turkey, I'll go on the horse.

Whoo! Oh!

Coming into Brighton to meet Grace and Rupert is a big step for me.

Till now, my tics have held me back.

But I'm hoping it'll all be fine because they've got Tourette's too.

A little bit nervous, but curious to see,

are you going to get on with them, or are you not?

-Hi! I'm Grace. This is Rupert.

-Hi, it's nice to meet you.

-We could go on these, if you want?

-Yeah, that might be fun.

-Cool.

Is that what you want to do?

Cool, yeah.

THEY LAUGH

This is amazeballs.

What's your most active tic?

Mine's like doing my chin and things.

My face. Doing that.

I do blinks, like that.

-I do that.

-Put my face up.

-Yeah.

Here we go!

-Do you swear?

-I don't, no.

-You are well lucky.

-Do you?

-Yeah.

-Aw. I can't believe we're talking about this!

Whoa!

Grace and Rupert are really understanding.

It's been an amazing day with them and I hope to do it again.

What did you guys like the most about doing this?

When this goes out and people with Tourette's

might watch it and feel a lot

more comfortable with their Tourette's.

It's OK to sometimes feel self-conscious of your tics

and it's OK to acknowledge them,

and it's OK to tell people.

And you shouldn't be scared of letting people know

that you've got this thing that you can't help.

What about you, Rupert?

If someone has Tourette's, they are still them.

-Yeah.

-It doesn't change who they are.

-Yeah.

-It's been nice meeting you guys here.

-Very nice.

-Thank you.

-Thank you for today. Let's go.