Down's syndrome: Emily's story 

Transcript of Down's syndrome: Emily's story

Hello, I'm Sarah Smith and I've got a daughter called Emily

who's almost 18 who has Down syndrome

and also had heart problems when she was younger.

When Emily was first born, there was a big shock around the hospital

because I was quite a young mum.

Everybody felt like they'd let us down or we'd let them down,

and she had quite a few health issues at the time

and it was touch and go, really, for the first few days.

18 years ago, the services were sketchy and patchy round the country.

People have a lot more understanding now about Down syndrome,

although there's still a long way to go.

People are now being included in television programmes, soaps,

different documentaries, which makes it better

because people can see

what people with learning difficulties can achieve.

I think it all depends on how your child is

as to whether they can go to mainstream school and get on

or whether they do need a bit of extra help.

The special schools have got a fantastic reputation academically,

whereas a mainstream school helps with the everyday behaviour

and peer pressure.

So it makes it easier, I think, on families, to some degree,

if the child is at mainstream.

But you've got to look at the child individually.

If they're struggling, nobody's going to have any benefit

from the child being at mainstream school.

On the flip side, if they can manage at mainstream

and have all that interaction with the peer group

and friendships within the town or village where they live,

then that is really beneficial for later life.

I'm Emily Smith and I have a sister called Grace Smith next to me.

(Sarah) The majority of children with Down's

do everything that their siblings do

and can bring an awful lot of fun into the family house

because they've got such a mischievous sense.

Their sense of danger is pretty diabolical.

They don't see danger when they're little,

and a lot like to run off.

I know Emily used to run in any which direction she chose.

To say they're slow at learning and slow at everything,

they're fast at running once they've got the knack.

She's always ridden a pony from the age of about four or five.

She competes with everybody else down at the local riding club.

Sometimes I help out with Emily when I'm trying to get Whisper ready,

which is my horse, and other times I have to get Emily to try and help me

but it doesn't always succeed 'cause she's not very good at helping me.

I am sometimes.

Sometimes.

That's something people forget.

They blame everything on the Down syndrome,

whereas in actual fact they are our children,

They're going to have all our traits and characteristics,

as well as some of these that are quite pertaining to Down's children.

So they are going to be... like I'm rubbish at art, rubbish at skiing,

they're things I think Emily'll be rubbish at,

but she's very good at lots of other things.

Well, I want to stay at college and do another course

and hopefully I might get a job afterwards.

It's really hard because you want Emily to do what Emily wants to do,

but at the same time without a bit of guidance,

you're worried that you're going to do too much pushing.

She's at college at the moment.

We hope that she'd like to go off to residential college,

just to get more independence,

but she said she's never leaving home, so we'll see.

But, at the same time, she'd love a flat of her own

so that she can either be with her boyfriend or as a group of friends.

She's had a few job offers already.

One is in Worcester, which would mean moving away from home during the week

but she's been offered jobs locally as well,

and it's a case of getting that balance right

and making sure she's happy in doing whatever she wants to do

and has got the independence that she wants,

but with the background care so that it doesn't fail.

So Emily's looking at a perfectly normal life of growing up,

getting married and living independently,

so our job is to help her get there.