Locked-in Boy My Life

Oh, there's going to be a crash!

Hello, my name is Jonathan.

And I am ten years old.

I have cerebral palsy which means I can't speak.

These are my words but not my voice.

I have written these words for my friends to read out.

And I have decided that one of them will be the voice of my life.

Let me introduce them to you.

Mawgan who has been my dependable friend.

Cole who is the best at sport.

Lewis K who talks to me about anything and everything.

Lewis S is really funny and has my sense of humour.

And I like him a lot.

I am not sure at all what my voice would sound like so who will it be?

Who would it be, Jonathan?

Lewis S.

I have asked Lewis to be my voice.

We have been friends since I was four and he will be awesome at it.

Now I have a voice, let me tell you about my life.

For over eight years I was locked in my body, unable to communicate.

But two years ago, that all changed.

This year I have got big plans. I want to change the way

children like me are taught.

Meet one of the biggest authors on the planet, Michael Morpurgo.

-Hello, Jonathan.

-And show him one of my own stories.

-Can I read it out loud?

-Can Michael read your story out loud? Yes.

But first let me introduce you to my family.

I am the big brother to two sisters.

-This is Susannah.

-Hello!

My earliest memory is holding her in my arms the day after she was born.

It was love at first sight.

And Jemima is my youngest sister.

This is a mince pie for Santa.

She is joyful and gives the best cuddles.

I have lots of brilliant people who help me every day.

-Including my lovely teacher, Sarah.

-Perfect.

My father is a vicar and I love listening to his stories.

That is your first birthday, isn't it? So much has changed.

And my mother is my greatest supporter.

She has always believed in me, she was the one who unlocked me,

helping me find my voice.

Well done.

When Jonathan was seven, I decided to start teaching him at home.

I devised a really complicated way for Jonathan to write.

It involved him choosing a category of words like saying he wanted a noun.

I would give him a whole variety of nouns

and he would choose which noun he wanted of the one I had given him.

We also had a little square that said ABC, I want to use

a spelling board. Every time he went back to the other board with a noun,

a verb and everything on it he always went to the spelling board

and I realised he wants to use the spelling board all the time.

This board which has changed my life is actually really simple.

If I want to say hi, I look at the grid the H is in

because the H is highlighted in green I then look at the green square above.

My mother would then sound out "huh". Next, I would look at the box

the I is in and as that letter is highlighted in red

I then look at the red square and my mum would say hi.

To confirm that my mum has got it right, I look at the tick box.

He spelt out I-L-0-V-E space Y-O-U.

He's chosen to write that and that makes so much difference

because you know that is exactly what he wants to say.

-Finally my voice can be heard.

-That is a great smile.

As adept fingers point, my silent soul emerges.

Soaring eagle spread wings, I fly to my destiny.

Very good, Jonathan.

Since being unlocked I read as many books as I can

but my favourite author is Michael Morpurgo.

And dreams, as we all know, don't make sense.

He's written over 100 books,

and sold millions of copies around the world,

and he's inspired me to use my new voice

to write my own book of stories and poems.

..L-O-O-K-I-N-G.

Listening, looking.

I'll be meeting Mr Morpurgo soon

so, today, I'm beginning a new story for him.

And wanting to be heard...

Using the board takes for ever.

Writing every single letter with my eyes,

it will take me over 30 hours to finish this.

Full stop.

Listening, looking and wanting to be heard,

I spend my time unable to tell my story.

You've hooked me.

You're supposed to say that, Mum.

It'll be much tougher to impress a world-famous author.

Do you think Michael Morpurgo's going to like it when he reads it?

I H-O-P-E...

I hope...so.

Yeah, I hope so too.

-I'm sure he will.

-I'm sure he will.

Good boy.

When my mum was pregnant with me,

we had a car crash which made me disabled.

When Jonathan was born,

the doctors didn't really know how things were going to work out,

so he spent quite a lot of time in a little baby incubator,

almost like a glass greenhouse with lots of wires and things in there.

The accident caused a serious brain injury,

resulting in me being diagnosed with cerebral palsy.

The doctors said I might not ever be able to recognise my parents,

but my mum believed in me.

Hello, Jonathan.

-VOICEOVER:

-I always knew that Jonathan was in there.

He just looked at us and he knew us. Yeah, he was always there.

The cerebral palsy means I can't control my arms or legs,

and it even affects the muscle co-ordination in my mouth,

so I can't speak. I also have trouble breathing on my own,

so I'm always connected to an oxygen tank,

but even with all this, I've never let it hold me back.

Every afternoon, I go to my local primary school.

Hi, Jonathan!

As you can see, my friends are always happy to see me,

and they always include me in everything.

Yay!

148.

121 centimetres. You're definitely beating us.

Jonathan and I have been friends since we were four.

There was no real way for Jonathan to join in,

but somehow we found a way.

I knew Jonathan about the time he started using his board.

I spent the entire first couple of months

studying Jonathan's every movement.

When you first see it happening, it's quite hard to understand,

but after a while, you soon get the hang of it.

Now it's totally different,

because we can just chat to each other.

-Yes or no?

-No.

-OK.

-Jonathan's cheeky,

and sometimes he'll make a joke about his carers,

which then turns round into a horrid one,

like one of his carers is over 200!

THEY GIGGLE

Even when he's smiling, it makes me start laughing.

What do you call a hedgehog which crosses the road,

jumps in a muddy puddle and crosses the road again?

A dirty double-crosser!

As you can hear, some of their jokes are terrible.

-Knock-knock.

-What's there?

I'm up.

I'm up who?

But in the end, Rochelle always has me laughing.

Jonathan, where do fish keep their money?

In the riverbanks!

THEY GIGGLE

-I'm only laughing cos you're laughing.

-Am I laughing?

-ALL:

-It's Jonathan!

LIVELY MUSIC PLAYS

# Under the white noise

# I hear a clear voice calling me

# You've got a way of spelling it out so perfectly... #

Home time always comes around so quickly.

-Have fun.

-OK.

Before I went to primary school,

I went to a special education school.

At first it was great. I met lots of new friends.

But we were never taught to read and write.

Inside, I am just an ordinary boy

but for years, I couldn't speak to anybody.

Can you imagine being silent for so long?

My sisters can't even do it for five minutes.

THEY CHAT AND LAUGH

I don't know how long I'll live,

but I'm determined to make the most of my life,

so I've started a campaign to help children like me.

Over 180,000 people have signed my petition

asking for all children, no matter what their disability,

to have the opportunity

to be taught to read and write.

Petition comments - other people with disabled children.

-Petition comment... Oh, well done.

-OK, yeah.

Tomorrow, I have the most important meeting of my life.

I've been given the chance to meet

the Minister for Vulnerable Children.

I didn't even know there was one.

Tell him everything you want to say.

But if anyone can change the way things are,

he should be able to.

I never had profound and multiple learning difficulties...

Because his communication is good and he's so extraordinary,

he makes for an amazing front man for that campaign.

I'm so exhausted.

I can't keep my eyes open.

Luckily I've got my trusty ventilator handy

to give me a boost of oxygen.

Hmm.

Today is one of those days when we're not going to wake up.

This is so important. I HAVE to power on.

Hello? Hi!

Are you coming to join us?

Yay!

He has a great sense of humour, he's very witty. Cheeky.

Don't close your eyes at this point.

You monkey.

-Yes.

-Thank you.

THEY LAUGH

Well, my seat IS comfortable.

Let's just hope I can stay awake tomorrow.

What have you got your eyes shut for?

There's always one part of the day that wakes me up - lunchtime!

You like lunchtime, don't you, Jonathan?

My food goes directly into my stomach through a tube

because I can't control the muscles in my mouth.

But even though I can't eat normal food,

I still love to bake as it puts a smile

on the faces of the people who do so much for me.

Let's make some brownies.

Chocolate brownies seem to make them particularly happy.

Oh, that was beautifully done, Jonathan.

Raw-egg hands!

"I waved them into your mouth, Mummy!"

And with a special button, I even get to do the mixing.

PROCESSOR WHIRS

Well done.

I've even written a poem about baking.

You've got helpers, Jonathan.

Dripping, goodness, loving, sharing

Aromatic, health repairing

Pleasant parcels held with pleasure...

Should they be in our brownies?

I think that's a yes, look.

I'm going to put them in the oven.

And here we are, loading up Jonathan's van.

Here's Katie, who will be our driver for the day.

-Hello, Katie.

-Hello!

Loading up Jonathan's oxygen.

-BOTH:

-Goodbye, Jon-Jon!

Jon...

Bye, Jon-Jon.

You're supposed to look at Jon-Jon!

This is Jonathan being loaded into the car.

It's rather like getting on board an aircraft.

There's music in the background, there's everything being loaded on,

people being squeezed into every corner.

Haven't yet had a safety briefing

but the oxygen masks are already down.

Hello, Jonathan.

Have we got sick bags?

Ready to go.

We're on our way to London to present my petition

to the Minister for Vulnerable Children and Families.

At the moment, he's having his medicine.

Jonathan has about 20 medicines a day.

They help his kidneys and his bones

and help him sleep.

We're definitely in London now, Jonathan.

There's a big red bus in front of us. Buckingham Palace.

It's London! Whoo!

We're just about to present this to the Minster for Vulnerable Children

and Families in the Department of Education. Thank you.

Jonathan only slept for three hours. He's smiling about it now.

-Which isn't funny, Jonathan.

-A good sleep in the car, though.

This is what six months of planning has led to.

I'm making my way through the Ministry for Education,

thinking of a way to start the conversation with the Minister.

I'm nervous but determined to help other children like me

who have never been taught to read and write.

Here we go!

Hello.

Hello. Hello, Jonathan.

Nice to see you.

Thank you so much for coming in to see me. Hope your journey was OK.

I'll look forward to having a chat with you.

-SARAH:

-T-H-A-N... Thank... Thank you...

..for...

..meeting...

..us.

Thank you for meeting us.

Well, it's a pleasure to meet you as well,

and I know we've been sending letters to each other

and talking about this really, really important topic,

so today's a chance for us

to learn more about what we can do to make the experience

of many children and young people who want to learn...

the opportunity to do so, whatever their needs happen to be,

so I hope it will be a productive meeting.

Yes.

THEY LAUGH

When Jonathan sits down and talks to anyone who has authority,

people listen to him. I think people are fairly blown away

by what he has to say,

and he was a little disarmed by this ten-year-old boy

who doesn't make a sound but has such a lot to say.

Well, I think it's really important

that no-one has barriers put in their way,

which we can break down,

because if they stay there,

then it means there's opportunities that you miss out on,

and what you've shown me through coming here today

is that you have some very, very strong and passionate views

that you want to share,

and the more that we can educate teachers as well as everybody else,

the advantages is not just for them but for all their pupils

if they do that, then we will have

done a good thing, and you will have made something important happen.

Thank you very much.

Cheerio. Bye-bye.

Thank you very much.

Meeting such an important person is a big step in the right direction.

That gives me hope that real change will happen.

I'm so proud of what we achieved today.

I just hope I've done enough,

and that one day, all schools will be able to...

..teach children...

..like me.

Full stop. Yeah.

Hope so.

-It's Christmas!

-It's Christmas!

THEY ALL CHEER

As a Christian, Christmas is my favourite time of year.

My faith is the most important part of my life.

This year, it was extra special as I was confirmed by the bishop.

With Jesus as my saviour, companion and friend,

I have lived my hours here with happiness in my spirit

and content calm in my soul.

I look forward with excited anticipation

to the day I will see Jesus

and live together with him in his garden for ever.

Happy boy!

When we get home, there is Christmas dinner.

Puddings are on the table, Jonathan!

And of course presents.

Woo-hoo!

But this Christmas, the best present of all is yet to come.

This is Jonathan on the morning of going to meet Michael Morpurgo.

Hello, love. You're excited, aren't you?

This is such a magical day. I can't believe it's here already.

Jemima in the front seat.

Are you going to be telling Claire how to get there?

-I don't know how to get there.

-Don't worry, darling.

I can tell Claire how to get there.

MUM LAUGHS

Mr Morpurgo is doing a Christmas performance

at Exeter Cathedral,

and he said he'd meet me backstage before the show.

You watched him all morning,

and then I read a Michael Morpurgo book to him in the car.

Read him all afternoon.

Didn't you?

Now you're about to meet the man himself.

It's nerve-racking waiting for such a brilliant author.

-How are you feeling?

-He's listening to the door.

Aren't you? You can hear someone.

Hello!

-Mr Morpurgo!

-How are you?

Hello, Jonathan.

Nice to see you.

You came all this way?

You silly boy, to come all this way

to just shake an old man's hand!

Can I sit here, Jonathan?

Do you know how lucky you are to be ten?

Ten's younger!

73 is older!

I...

W...

I wrote...

..a...

..story.

-Have you got it?

-Yeah.

-Can I read it out loud?

-Jonathan, can Mr Morpurgo read your story out loud?

-Yes.

So, this is Curtains To Freedom.

"Listening, looking, and wanting to be heard,

"I spend my time unable to tell my story, in silence.

"I live behind the curtains."

There was that moment where it was just the two of them,

and there were two writers, and they were lost together.

And it was beautiful.

"Preventing my freedom and trapping me and my friend Edward

"in our magical worlds of colourful pictures and steady drumbeats.

"We retreat to the glorious hidden haven.

"When will we be flying free, beyond the curtain?

"Higher towards the sky we ascend

"so that the undulating ground beneath us is spread

"like a laden picnic blanket, up and on.

"Looking at the squares of letters and colours held in front of me,

"I spell out..."

Good work.

LAUGHTER AND APPLAUSE

It's remarkable writing.

You use words like a paintbrush. And also like a composer.

This is extraordinary.

I think this needs to be sent to the Ministry of Education.

People should see this.

My goodness me, what thoughts go on in that head.

SARAH READS HIS WORDS

"I am your student."

Oh, that's lovely.

I've always wanted a student.

THEY LAUGH

I-I think it's a lovely thing to say,

because that means I am a sort of teacher,

and that's a wonderful thing to be. Thank you for saying that.

This is very strong in emotion. This is deeply felt.

And I think maybe that's what links your writing to mine,

because I try to make my stories

full of the feeling that I have inside me.

Sometimes, it's anger,

sometimes, it's love -

could be all sorts of things.

But, certainly, that's what I hope people find in the stories.

So we are linked that way, I think -

you, me,

and Shakespeare.

I can't quite believe my hero read my story.

We travelled the landscape of my emotion together.

THEY LAUGH

One, two, three, four, five, six,

seven, eight, nine, ten.

Hello, how are you? What's your name?

-Susannah.

-Let me shake you by your hand.

And you as well. You're not Susannah, are you?

-Jemima.

-Very nice to meet you.

Jonathan, are these your sisters? You poor thing.

THEY LAUGH

You have a lot to put up with in life, don't you?

Yes.

I don't really like meeting writers who are every bit as good as me,

but there you go.

THEY LAUGH

Particularly when they're younger than me.

THEY LAUGH

I'm not often speechless, Jonathan, but I sort of am.

Listen, it's been lovely meeting you,

and I'll see you after the thing,

and I hope you like the singing, and I hope you like the story.

You tell me afterwards, OK?

Thank you very much.

I began work on it on Christmas Eve,

and everyone was singing along to Good King Wenceslas.

CHOIR SINGS GOOD KING WENCESLAS

Listening to Michael Morpurgo's Christmas story was beautiful.

Happy Christmas!

I loved it.

-I did, too.

-We all did.

Did you enjoy that?

Did you like it?

You always come out with surprising words.

-THEY LAUGH

-Lovely, Jonathan.

I've so loved meeting you. It's made my evening.

But there's one more question I still need to ask him.

Yes, I'd be honoured to.

Thank you so much. Thank you.

You've absolutely made his year.

Have a blessed Christmas.

-Thank you very much.

-SARAH:

-You, too.

-SUSANNAH:

-Thank you.

I'm so happy he said yes.

What a night.

It really was the best present.

COMPUTER ALERT CHIMES

Oh, Jonathan, look - there's an e-mail here.

And on the back of the meeting you had with the minister,

there's some research which has come out from the Government,

and it says, "Provide research and case studies into the

"effective teaching of literacy

"for non-verbal pupils with complex disabilities."

What do you think about that?

This is great news.

But I won't be happy until

every child is given the opportunity to read and write.

And my campaign won't be over until that day.

"It's a step in the right direction."

It certainly is a step in the right direction, Jonathan.

There's not many ten-year-olds who can campaign for Government

and end up getting some research commissioned on the back of

their campaign.

HE EXHALES

SHE LAUGHS

What a year it's been.

Today, I turn 11.

# Happy birthday to you. #

Mr Morpurgo has sent me the foreword for my book.

Hi, Jonathan.

It's Michael here.

Jonathan, meeting you that day has left its mark on me.

It's a memory I shall hold dear for the rest of my life.

So I thought I would write you this foreword.

"Jonathan has opened the door for us into his world,

"and reached out his hand to us in his writing.

"When we take his hand, as we read, he is not locked in any more.

"And neither are we.

"We join him in his journey, he joins us in ours.

"Not alone any more, Jonathan."

Very excited that we're going to go and see this literary agent.

Who knows what will happen next year?

But I'm going to make every moment count.

I have asked Lewis to be my voice.

We've been friends since I was four,

and he will be awesome at it.

There's always one part of the day that wakes me up.

THEY CHEER

Yes!

-MAN:

-Great work, guys.

-WOMAN:

-Brilliant.