Special Me

'This is you just arrived home. This is Gareth just arrived home.

'Isn't it? Mm? Yes.'

We had been married quite a while, so he was very, very special.

It was the third day, and a nurse in the hospital

became suspicious that there might be some little problem.

In my head, Gareth was going to be the first Down's Syndrome Prime Minister.

He was going to be the best thing ever.

He had a wee bit of speech,

but then that disappeared with the onset of autism.

-There's help till he's 18 or 19, then...

-It disappears.

He's basically dumped on the scrapheap.

There are thousands of young people like Gareth, thousands of parents, facing this same problem.

The day he leaves special school, his education ends.

And how are we going to explain to Gareth,

who has such limited understanding - "Sorry, Gareth, that's it"?

Hmm. Hmm.

Gareth Knox from Magherafelt was born with Down's Syndrome,

but as a child he developed autism and lost his ability to speak.

He has severe learning disabilities.

This is Gareth.

And Gareth will soon be 18. Won't you, Gareth?

Gareth is, to all intents and purposes, an adult in frame, almost, but a child mentally.

He's two, three, four maximum.

Life is about to change dramatically for Gareth and his parents.

Over the next three months, Gareth will turn 18.

He'll transfer from child to Adult Services.

Arrangements for his respite care will change

and he'll also start to prepare to leave school at 19.

It's a huge step into the unknown.

His likes and dislikes are still very childish.

He can't do anything really for himself, personal care-wise.

-He can't wash himself, can't dress himself.

-Hmm!

-He depends 100% on us.

And then this side.

Gareth's family is typical of countless families across Northern Ireland.

Their story highlights the lack of educational opportunities

for those with profound learning disabilities,

and the uncertainty they face when leaving school at 19.

Gareth is expected to leave in 2014.

Learning for him, is learning how to use a knife and fork properly.

It's learning how to put the light switch on when he goes into another room.

So school life for Gareth has been so wonderful.

It's been pushing the steps for him so much.

So why let it end with a complete cease of educational input?

I just feel there should be something.

They're slow learners, so why don't we give them longer?

That arm. Right, Oh, well done.

That's good.

Gareth currently spends up to three nights each month

at his children's respite unit,

but when he turns 18 in seven weeks' time,

those arrangements will change.

His parents don't know when his new respite will start.

I had hoped by now to have had input from Adult Services

and I haven't got it.

So to all intents and purposes Gareth's overnights, and our chance to have a break, will end.

And it could be next year. We've no idea when we get another overnight.

As I see it, he has no-one, nothing else but that the bus comes in the

morning from when he was three years old till when he's 19 years old.

He doesn't know why this is all suddenly changed.

He'll not get what's happened.

One day his life will just turn around completely.

Hmm.

OK, Gareth. Good man.

We're the oldest class in the school. We are the school-leavers' class.

So everyone in this class is going to be leaving

within two or three years, isn't that right?

Gareth goes to Kilronan Special School.

He's been at this school since he was three years old.

In this class we have a wide range of abilities and disabilities.

And we have some pupils who would have profound

and multiple disabilities.

The school caters for the needs of each pupil with a high level of care

and a tailored programme for their educational needs.

Gareth's classmates use various ways to communicate with one another.

His PECS - Picture Exchange Communication System -

is his means of communication.

He chooses a picture from his PECS book to tell us

what it is that he is going to do.

He takes the picture - say, a picture of his dinner -

hands that over to the cook, and he exchanges the picture for his dinner.

In addition to encouraging communication,

the pupils are taught a wide range of basic skills in a specially adapted classroom.

-Gareth, no, you're not getting into bed! No.

-Hmm!

-No.

You're not getting in.

I could get a wallop here.

The purpose of this room is to develop life skills for the pupils.

Another of Gareth's targets will be to fix his own bed

when he gets up in the morning.

Even if its a matter of pulling up the quilt.

So there's a lot of learning.

And a lot of the skills I'm trying to develop at this

age are skills for future life.

Things that they can use at home.

Things that they can and should be able to do for themselves.

And will Gareth ever be able to make his own bed?

I don't know. But I am going to give it a good try.

Out of the ten pupils in Gareth's class, three of them are now 19

and will be leaving in two weeks' time. Aarti is one of them.

-Do you want to leave school?

-No.

-Why?

-Because I will miss all my friends, teachers and staff.

-Aw...!

-And especially the staff.

-And especially me.

-And staff.

-Especially me.

-And staff.

-Especially me.

-Yes, you too.

-LAUGHTER

-Are you ready? One... two...

-Three!

-Good girl!

Oh! Where'd it go, Adam?

-You must become very attached.

-Every year it's heart-breaking.

Every year, when we have the school-leavers' party,

and the mummies come in,

they're in tears and we're fightin' hard to hold them back

for the pupils that are leavin' and moving on. Because it's SO traumatic.

Because they've been here since they're four years old.

But many would say that everyone has to move on.

Yes, everybody has to move on, but I just feel that there's still

so much possibility for education for these young people.

I mean, we don't stop learning when we leave school,

we all have the opportunity to go on to further education,

if we so wish, why are my pupils here in this class any different?

For Gareth, there is no opportunity to go to FE.

Where are the options for these people?

Where are the courses that are being provided for them?

Why is nobody following this up?

Oh, big kiss for Mummy!

There are parents across Northern Ireland in this situation,

who are fighting their little corner.

And yet everybody needs to get together

and somebody somewhere needs to take the responsibility

for providing what is needed for this group of the community.

For young adults with severe disabilities,

the options are severely limited.

But for those with more ability there are more choices.

I'm David Skelly. And I'm 32.

The first baby in our family was me.

Because I was their first child.

'David volunteers every Wednesday with Stepping Stones.

'The charity gives adults with learning disabilities

'the opportunity to take part in accredited training,

'and gain skills for employment.'

-Were you scared about leaving school?

-No.

-Why not?

I liked to see all the people.

-And when you left school, you've worked every since?

-Yeah.

-Is it important for you that you have a job?

-Yeah.

He's a really hard-working member of our team.

And he's great to have about.

And he's fabulous on a Wednesday for keeping the place sparkly clean.

David's very keen on having each work area perfectly tidy

before he starts the task,

and would brush the floor three, four times a day if I'd let him.

He constantly keeping everything tidy.

David left school when he was 19.

Each week he works in paid and voluntary employment.

David and his colleague Andrew have been friends since school.

-I'm told you have a very, very special friend in your life.

-Yes.

-Yes, it is.

-Who is that?

It's David.

-And...?

-I have a girlfriend.

Got it in one.

What does it mean to you to have a job?

See all people and see what they're doing.

And the important bit is to, erm... to get paid, as well.

Do you remember the first time you got a job and you got paid?

-Uh-huh.

-How did that make you feel?

-Proud.

Welcome to our leavers' party. Thank you very much for coming.

We have three people leaving school this years - Ryan, Phoebe and Aarti.

Today was one of the biggest days in Kilronan's school calendar -

the school-leavers' party.

Gareth's classmate, Ryan, is one of three people leaving.

Like Gareth, he has severe learning disabilities and can't speak.

He'll be going to the adult centre in Magherafelt.

Ryan is leaving after 15 years at Kilronan.

And how do you feel about today and Ryan taking that next step?

I'm devastated.

It's leaving the school that is the hardest part because it's a wee family.

And they know them so well. Erm...

With regards to where he's going,

he started the transition way back, just before he turned 18.

And for the past three months he's been attending the adult centre

for a few hours on a Friday and he loves it.

I don't know if he'll get as much of the same attention,

of one-to-one when he does go to the other centre.

And even if he does, we don't know how often he's gettin', as yet.

Or how many hours he's getting. That hasn't been finalised.

Gareth's classmate, Aarti, hopes to work in a cafe.

Like, her, Phoebe has more choice.

Phoebe has been offered a mix of further education,

training for supported employment, and a chance to make new friends at a drop-in centre.

-You're leaving school tomorrow?

-Yeah.

-How do you feel about that?

Uh, a bit upset. A bit...

Getting used to it really.

And I don't want to make my family upset, because

they know I can do better now.

-And what are you going to miss about school?

-School... Oh, sorry.

BREATHES DEEPLY, EXHALES SLOWLY

School, erm...

(Sorry...)

Just makes me sad, really. To be honest.

I... I've done this so many years.

A bit, really shocked, really.

It's just... hard sometimes.

It is now only five weeks until Gareth is 18,

when he will switch overnight to Adult Services.

Claire and Nigel have still heard nothing about his new respite arrangements.

As we stand, I have not met anyone from Adult Services team,

who will be our social worker, or Gareth's social worker.

We've got five weeks,

and the thing that's most important in our life is Gareth's respite.

The line in the letter I brought to highlight the poignancy of it...

that it's actually happening,

is that there will be no further reviews held under Children's Services,

and any further meetings will be convened by Adult Services.

When?

Supposing there is a break of even a month, six weeks,

that could be crucial.

We can't communicate to him what has happened.

He certainly, although he can't communicate verbally to us,

his frustrations are still there.

And he will be wondering in his wee mind, in his way, what has gone wrong.

But how that will end up being communicated,

-is that Gareth will develop more...

-Aggression.

-..aggression.

-Mm-hm.

-And his behaviour patterns will...

-Escalate.

-Escalate. Again!

We may be forced for more and more medication.

I cannot understand why there has to be such a long gap.

I mean, Gareth has been becoming 18 for the past 18 years.

Our overnights, we love,

because we can usually just sit and put our feet up.

To be honest, we don't have a high-flying social life.

We get a film out, we watch,

sometimes we might make a telephone call to friends or family.

We've have needed that for the last number of years.

-Sometimes we just need to sleep.

-Sometimes we do just need to sleep.

We're going to reach probably a breaking point.

We're moving further forward in our fifties.

If we were deemed to need this help for the last 18 years,

where is the mindset that as we get older and less able,

Gareth gets stronger and perhaps more stubborn in his traits,

that we aren't seen to need this help?!

It doesn't make sense.

Gareth has just spent his last night at Children's Respite.

Good morning. Good afternoon.

-How are you?

-Last time I'll be doing this.

In less than a week, he turns 18 and moves into the adult system.

Look! Is there somebody else here as well? Hmm?

He couldn't wait to get up to see you, Mummy.

-He's been very good.

-It's me again.

And that's David.

It is. That's your friend.

MUSIC PLAYS

We have met with our new social worker in July.

And...I have to say, it's been very comforting and very heartening for us.

We feel she's very much got an idea of what wee need.

She can't wave a magic wand to make it all happen instantly,

but I do have confidence that she's got our interests at heart.

While the family have now heard from Adult Services,

there is no definitive plan in place.

It is the middle of the school holidays

and they still don't know when Gareth's adult respite will begin.

He really has nothing for the next five weeks,

which means that it's Nigel or myself

constantly providing something to try and excite him

and keep him motivated every single day and every single evening.

Turning 18 is a huge milestone in anyone's life,

but Gareth will never know what it means to be an adult.

# Happy birthday to you

His family is holding a birthday party for him at his aunt's home.

# Happy birthday, dear Gareth

# Happy birthday to you

-Wow!

-It's hard to grasp that Gareth now is 18, because in so many ways he's still a child.

So it's a strange feeling.

In some ways it's hard to come to terms with all those different wee things,

but that's just how it is.

Gareth's cousin Laura was born a day before him.

For Laura, like most 18-year-olds, she has many options ahead of her.

It's a bit different for Gareth. I'm excited, I'm 18 now, am adult.

For Gareth it's nearly something that trips him up,

in that he's 18 now and things are going to change for him,

his routine's going to completely change.

And it's going to be hard.

TV PLAYS

Gareth doesn't understand that it's his birthday.

Today's party has disrupted his normal routine.

It's as if he has to go off and process. We've always called it "processing time".

He can take it for a wee while and then all of a sudden it's like someone switches a light on

and he needs to go and figure out the world around him.

HE GROANS

Errr!!!

Is that what's missing?

Even something as simple as this, he can only cope... for a very short time.

Just a few minutes is very often all that Gareth can take

of any sort of social gathering.

And again it has to be kept very small as you can see.

And... there's certainly none of the things an 18-year-old

would be going out and doing on their 18th birthday.

There are none of those that Gareth could even contemplate doing.

Phoebe left Kilronan School two months ago,

this is her first day at Alternative Angles in Ballymena,

where she will go two days a week.

-Hi.

-Good morning.

-Hello, Phoebe. How are you?

-Welcome to famous star Phoebe.

ALL LAUGH

-How are you, sir?

-Not too bad.

ALL LAUGH

-Looking forward to getting to work?

-Yes.

Well, Phoebe, I think... She's ready to move on,

but because it's really a next step up from school,

it's very similar to school

in the way there's two or three supervisors.

And I think because of that, I have peace about it.

If she was going into work in a shop or somewhere...

it would be a different story completely.

Alternative Angles is a scheme which teaches new skills

and enables adults with learning disabilities to prepare for work in supported employment.

Phoebe is already making new friends on her first day.

She's a beautiful person, she is.

And I love everything about her.

What tips would you give Phoebe?

I'd just give her a bit of help.

I'm a helpful person, I help people a lot.

So that's what I do.

-So if you pour yours and then you can match it to that one.

-OK.

-So you should be able to pour one, two, three.

-Three.

Do you prefer doing this or did you prefer going to school?

-I prefer doing this.

-And why is that?

Now... I can make my family happy.

What are you enjoying most?

Making candles and waxing and...

A lot of people are good to me, so...

When Gareth leaves school at 19,

Claire and Nigel are certain his only option will be a place at an adult centre.

Today, they are taking Gareth to have a look around their local unit to see what he can expect.

This is an opportunity for you to view the centre today and see what you think about it.

And for Fiona to get to know you and for Gareth and yourselves to get familiar with the environment.

This is Ann and Charlie. And Ann and Janice.

They're doing artwork today. Do you like art?

If that decision's made that Gareth will come to the adult centres

then we would start the process of the transition.

And that would be, for example,

start from here and maybe going down to the school

to visit the teachers in Gareth's class and see what activities he enjoys there.

Have you got a book?

Wait till we see.

Look at it! All the pages have gone.

My goodness! There's no pages in there.

I was just wondering from the point or view of education for Gareth,

does that, because he's not going to be able to avail of going out to college or to courses,

does that end for him?

I suppose in reality it would, because we are very much a building space,

so education certainly would be seen more through the day opportunities programme

and people would be availing of that.

And, John, what's that one? Home?

The symbol for that there.

That's it. A book.

We have other activities here that people can enjoy.

Sometimes with people with autism, we can find that maybe they have an energy that needs to be released.

Maybe just throwing a ball or going outside to the garden area

and doing exercises that are getting rid of that pent-up energy.

So that's what we would be looking at within the adult centre for Gareth.

Stressed out, are you?

Some of that pent up energy is building up at the moment!

And we do try to get of it before home time.

Do you want to go out?

-Do you want to go for a walk?

-Shall we go for a wee walk?

-Will we go for a walk? Will we?

-Even out to the wee garden.

LAUGHS

He's going at me.

Now, you're all right.

You're OK. That's you.

If you couldn't speak or couldn't cry or couldn't vent your anger or frustration,

how else can you do it but get physical?

Well, through our training here we would be trained in what's called respect training,

which is looking at ways of preventing challenging behaviour from escalating

and also ways of coping if it does.

We hopefully turn around the triggers and it really does work well.

Claire is hopeful that the adult centre staff

will be able equipped to deal with Gareth's challenging behaviour,

but she still has concerns.

I felt the staff were very tuned in.

I did feel that perhaps my fears about the education stopping were justified.

I mean, nobody was pretending that education continues. I mean, it doesn't.

That's not their fault in any shape, from or fashion,

but I think it's policy and legislation at government level that dictates that for Gareth.

Are you playing with me? Follow me down this way.

Follow Fiona.

If Gareth was slightly more able, he would have more opportunity.

So we're giving the most vulnerable people the lesser chances.

Because he's so badly affected, his choices are poor.

And that's really it in a nutshell.

It's... I mean, his opportunities are not what you would have dreamed for an 18-year-old.

Erm... and with the best will in the world,

somewhere like this will care for him and hopefully love him,

but it's... it's not what anyone wants for their young adult.

I'm not ashamed to say it's not easy.

You know, I love him, we love him dearly, but it's not easy.

It really isn't.

-Come on.

-One. Two. Three!

It's the start of a new school year for Gareth

and for now at least this part of has daily routine stays the same.

The immediate concern is his respite care.

Gareth's last day under Children's Services happened two months ago,

Claire and Nigel still don't know what the new arrangements will be or when they will begin.

He's the joy of our lives.

I mean, we wouldn't be without him, even though there's times you could tear your hair out.

I mean, Gareth is just Gareth is just Gareth.

And that's it, really. Isn't it?

Well, I DID tear my hair out!

-Yeah.

-LAUGHS

Had someone told me when he was a wee bundle in my arms

that at 18 he wouldn't speak, he would mentally be about two or three,

I don't think I could have coped back then.

We have got to continue fighting Gareth's battles for him,

because, well, he can't.

I'd love him to have more choice leaving school

to continue developing in whatever way Gareth can develop,

but I'd like that door to still be open.

That's... That would be my dream.

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