Rita Simons: My Daughter, Deafness and Me


Rita Simons: My Daughter, Deafness and Me

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Fat, pregnant Rita.

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Actress Rita Simons

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has been playing Roxy Mitchell in EastEnders for five years.

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That is about as big as it's going to get.

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In 2006, Rita gave birth to twin daughters.

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Maiya, Jaimee.

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-SHE SNEEZES

-Oh, bless you!

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'There's no words for it. Overwhelmed.'

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It's just amazing. It looks a bit like you,

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it's just a little bit of you and your husband,

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or the one you love, in a little package.

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Incredible. The best feeling EVER to date.

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Maiya. Hello!

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At six months, Maiya was diagnosed as moderately deaf.

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She's missing nerve endings

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and she's missing parts of her cochlea that mean you can't hear.

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-She loves the camera, doesn't she?

-She's her mummy's daughter.

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Over the last five years, Maiya's hearing has deteriorated.

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Now Rita and her husband Theo are faced with life-changing decisions

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that will affect Maiya's future.

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Because there's a chance of her losing her hearing tomorrow,

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we do feel like we're constantly walking a tightrope

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that we could fall off of at any point with no given warning.

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Hey. Did you have a nice sleep?

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Where's her hearing aid?

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Now aged five, Maiya wears a hearing aid in each ear,

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which amplifies the sound around her.

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-Boo.

-Yes.

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-Hello.

-Hi.

-Hi.

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With her aids in, she can hear people speaking.

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Hey!

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Turn it off for me.

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With them out, she can only hear very loud sounds in her right ear

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and has no hearing in her left.

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Her speech goes a little bit lazy when she takes her hearing aids out.

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That's because she can't hear what she's saying.

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Maiya, what am I saying?

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-Snake.

-Snake.

-Snake.

-Snake.

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There's a lot of high-frequency sounds that have S and the K,

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they're both quite high-frequency.

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-Maiya. Maiya! Snake.

-Snake.

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-Mummy.

-Huh?

-Mummy.

-Bum!

-THEY LAUGH

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Did you say that?!

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-THEY LAUGH

-Honestly!

-I'll ask, I'll ask!

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Rita is a working mum,

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spending up to six days a week on the EastEnders set.

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Stand by! And action!

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Aw! Grandad, it's my roots!

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-Oh, are you telling me that doesn't come out of a bottle?!

-And cut!

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Her husband Theo runs a hair salon in North London.

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-Daddy, Daddy!

-Oh, my God!

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Any change in your kid's life is going to be difficult to swallow.

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You automatically think of limitations.

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What does this mean for Maiya? Why is this happening? Why? Why?

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Since birth, Maiya has had a hearing check-up every three months.

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When you hear a sound, you have to put a ball in the bucket.

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HIGH-PITCHED BEEPING

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The audiologist plays sounds at different volumes

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and frequencies to check how good Maiya's hearing is.

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Can you hear a noise?

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HIGH PITCHED BEEPING

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The measurements taken today will be compared with previous results

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to reveal if there has been any further deterioration.

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Good girl.

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You're doing ever so well, Maiya.

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Maiya was born with a widened vestibular aqueduct,

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a deformity in her inner ear which causes hearing loss.

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So, what I'm going to do, I'm going to put

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this little soft tube just into your ear a little way, OK?

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It measures the sound in your ear.

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Maiya is also undergoing tests for a genetic disorder,

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Pendred Syndrome.

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Rita and Theo believe that if she has this condition,

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Maiya will lose her hearing completely.

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All right.

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Our issue is her having the Pendred Syndrome,

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so we can prepare if she does, that she'll lose her hearing.

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So we do really want to know,

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because if she has the widening of the vestibular duct,

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and that's her only issue as far as hearing loss goes,

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we're going to be very happy with that.

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That is the thing that causes hearing loss, deterioration.

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-Oh, I see.

-The large vestibular aqueduct.

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Well done!

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The condition she has now,

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-WILL cause her hearing loss, or CAN?

-Will.

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Maiya.

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-Hi.

-Maiya! Has she got her hearing aids?

-No.

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-What?

-OK, sit down, Rita.

-Is there something not good?

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What did you think we were doing the test for?

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I gathered it was to see if she had Pendred Syndrome.

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Right. For what purpose?

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Because most kids with Pendred more or less tend to

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-lose their hearing, so...?

-No.

-Why?!

-That's not what it is.

-What is it?

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Basically, Pendred Syndrome is information to find out

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if it's going to happen to her kids, not about hearing loss at all.

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-It can just deteriorate as well, without.

-Oh. Really?

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Until this moment,

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Rita and Theo thought it might be possible for Maiya

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to retain the level of hearing she currently has.

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'It was a bit of a shock.

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'You just don't want to hear it!

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'You want them to say, "Actually, she's doing really well,"

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'you know, "there is a chance she's going to be OK."

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'But they can't say that.'

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It's like mortifying. And I can't do anything about it.

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I can't say, "Maiya, take my ears."

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"Take my cochleas, have them." Because I so blatantly would.

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I always expect the worst, so I don't get hurt. Theo is quite an optimist.

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I suppose he's open to emotional pain more than me, because I'm like that -

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"No! Everybody stay out!"

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You know, the glass is always half-full with him.

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So, yes, I think it did shock him, and he will try and take the answer

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and twist it and make it sound good, but the truth is the truth.

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Everybody!

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Your stepmother clothes!

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Here we go! And then you need to clap!

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THEY CLAP

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-Cinderella! Do your chores!

-I am.

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Like Maiya,

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between 5 and 15% of deaf people have progressive hearing loss.

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-May I have this dance?

-Yes.

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On top of this, doctors have told Rita and Theo

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that any bang to the head

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could accelerate damage to Maiya's inner ear,

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-which may cause her to lose her hearing completely.

-Up there?

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Behind my back.

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'You're just constantly trying to preserve, preserve, preserve.'

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And sometimes, it seems so pointless, because unfortunately,

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it may all be futile in the end.

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What do you want to be when you grow up, Maiya?

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I want to be a fairy, a vet or a...show player.

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Show player?

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-What, like an actress?

-A show player is when we do shows for everyone.

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She's absolutely great at singing! Great!

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I haven't at any point said to her,

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"it's very likely you're going to lose all your hearing."

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It's my job to worry about how we're going to manage it

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and how we're going to cope, and when the time is right,

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then I will tell her.

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I want to look at all of the options out there.

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Each route is so different from the other.

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So I guess exploring all of them

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and having an absolute understanding of each option

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is imperative for how we move forward when the dreaded day comes.

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Many people with hearing loss communicate using

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a combination of signing and speech.

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But some deaf people decide to live without sound altogether

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and use only sign language.

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People say, "Oh, you should interact with the deaf community"

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and you should be doing this, that and the next thing.

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It's just that we haven't felt we needed to. Her life is very full.

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She goes to ballet, she goes to street dance,

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she does all these things without anything having to be

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specifically designed for deaf kids. So, we haven't engaged.

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Hello! Hi! I'm Rita. Nice to meet you. June, right? June. Come in.

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-Come in.

-I'm Theo.

-I'm Louise.

-Hi, Louise, nice to meet you.

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June, a sign language teacher, is giving Rita and her family

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an introductory lesson in BSL - British Sign Language.

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-June, June, hi.

-This is June. Say hi!

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Say hi! Come and say hi!

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-Say hi!

-Maiya?

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-Say hi, now, please.

-Hi.

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I don't think she realises you're deaf. Maiya! June's deaf like you!

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-She's saying you're the same.

-She does the sign.

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I can hear some noises, but I can't hear, obviously, people speaking.

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It's only signing that I communicate through.

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My family are Deaf as well.

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-So, you're from a Deaf family, so everyone in your family signs?

-Yeah.

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-Where do you guys live? That's the sign for live.

-Oh, OK.

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Put your finger here. Live.

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-Twins.

-Is Jaimee doing it? I want to see.

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Walking. Car. Drive.

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How do you get to school?

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-June is talking to you.

-Maiya. Sit up.

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Can we explain something? Do you know why we're doing this? Listen to Nana.

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This is for you, so that Nana and Daddy and Mummy

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and Jaimee can all sign, so we all know what to do.

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-For you. For you.

-For you, darling. OK?

-Yeah?

-So you be really good!

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And then when you're in the bath, and you can't hear us,

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-we can sign to each other.

-That's great, isn't it?

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But if you don't want to do it, then you go. Yeah?

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Go on, bye!

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We'll teach it to her after.

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When she feels like learning, she's like a sponge.

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And when she feels like playing up,

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she just does whatever she wants, which is what she's doing now.

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When I started signing, I was about eight months old.

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My parents are Deaf, so it was easy to understand and pick it all up.

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-You've never worn hearing aids?

-Sign language is just as good.

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So you don't desire at all to wear them,

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the way it works for you, it works for you, right?

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It gives me a real big headache. It's so noisy.

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I'm proud to be Deaf. I'm born deaf.

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And if I didn't have sign language, what would I do?

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I wouldn't have any identity at all.

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Like for example, like for you, when Maiya gets older,

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she'll feel that she is probably missing out on something,

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maybe Deaf people and how they communicate.

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But you're in a better, I suppose, position, than say Maiya,

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because you come from a Deaf family, so this is a way of life for you.

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Whereas if you come from a hearing family,

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you want your children to do what you do, and be the same as you.

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Just like your parents wanted you to be the same as them.

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-I presume.

-That's right.

-Thank you. Thank you. Bye bye.

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-So nice to meet you. See you later.

-All the best.

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With our lifestyle, it is impossible to schedule, is it not,

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-a trip to the zoo, for God's sake!

-Oh, yes, it's very difficult.

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What I can't imagine is being able to

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find the time to schedule yet another thing.

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Where do you draw the line between what is enjoyable for Maiya,

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like going to musical theatre classes after school

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and going to ballet and the things she loves doing,

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where do you draw the line between it being something she needs to do

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that might bore her a little bit, because it's something she needs?

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And because it's not something she absolutely needs,

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I don't want to take away one of her other things that she enjoys doing...

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-I agree.

-..to replace it with that.

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-And I haven't got time to take her!

-Yeah.

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The worst thing would be is if Maiya doesn't do any sign language.

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That would be a bad thing, I think,

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because her hearing might suffer quite a lot

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and she might not be able to communicate,

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so they all need to learn sign language.

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I think that's definitely a priority. If anything did happen.

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LAUGHING AND GIGGLING

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No more, no more.

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Out!

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Right. You go and wait in your bedroom.

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THUMP Oh, no, no, no!

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MAIYA SOBS

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You banged your head. Did you bang your head?

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SHE SOBS

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Show me where it hurts.

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-It really hurts.

-Does it really hurt? Oh, God.

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-Not good. At all. OK. Now, listen. How's your ears?

-Fine.

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Can you hear me properly? Promise me? How do your ears feel?

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Are you going to laugh?

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Come on, let's do your ears. Let's do your ears!

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'It's sheer panic for me.

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'It's the one thing that causes me to just freak about her,'

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because I don't know how severe it is.

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I'm not her, I didn't feel the bang,

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I don't know how hard she's done it.

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And I'm very, very sure in my gut, that somewhere along the line,

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a bang on the head is what caused her to decline in the right ear anyway.

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Can you hear me?

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Does it? She just said her head hurt a teeny bit.

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I do not like that at all.

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It's just rubbish.

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It's rubbish that in one moment of being five...

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LOUDER: Can you hear me now?

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'..you can have one sense missing'. Can you hear me NOW?!

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It seems so unfair.

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But it is what it is, isn't it?

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Two days after banging her head,

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Rita and Theo are taking Maiya for another hearing test.

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SHE GIGGLES

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When you hear a beep, can you put one of the animals...?

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She knows this test very well, don't you?

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HIGH PITCHED BEEPING

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LOWER PITCHED BEEPING

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HIGH PITCHED BEEPING

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DOCTOR GASPS

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MAIYA GIGGLES

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HIGH PITCHED BEEPING

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LOWER PITCHED BEEPING

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She's very good.

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The results are then checked against her last test, four weeks ago.

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Absolutely the same.

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-Absolutely the same as before.

-OK, good.

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This is what it looks like, Maiya, when we're watching you.

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Oh, my good God!

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Paul thinks it's a good idea

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for Rita and Theo to experience the world like Maiya.

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He's making custom ear moulds that will simulate

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the level of hearing loss their daughter has.

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I can't really hear anything.

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-I can hear myself.

-Course!

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I'm just going to lift up from the bottom.

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# Have you ever seen

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# A penguin come to tea?

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# Take a look at me

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# A penguin you will see. #

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Penguins, attention! Penguins, salute!

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-Right... This one?

-No.

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Right arm.

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# Have you ever seen

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# A penguin come to tea? #

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-Come on.

-You need to put your jumper on, Maiya.

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90% of deaf children are born into hearing families.

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' "..can't be stone deaf," said the queen. "Of course he can hear us." '

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Rita is meeting another hearing mother, Trish Thompson,

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who has a seven-year-old deaf daughter.

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Paris has the same hearing loss as Maiya.

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Unlike the majority of deaf children,

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Paris attends a specialist deaf school.

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I have given Paris sign language. I've found it really, really useful.

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I don't know how you feel about sign language.

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We haven't embraced the Deaf community,

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and we haven't sent her to special school. She's in mainstream school.

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Deaf culture and Deaf community is such an important thing

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because, when they leave school, they do gravitate towards

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their culture, their community.

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They have lots of things in common. The biggest thing

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is communication breakdown.

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Where are you, where are you?

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Keen to demonstrate how Maiya communicates,

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Rita shows a video of Maiya talking to her dad.

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'..and then put it under the pillow,

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'so then I put it on the pillow, and then I got this.'

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-THEO:

-'How'd you get that?'

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'Yeah. I-I-I...'

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There's communication breakdown.

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He's asked her a question and she's just carrying on.

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She didn't understand what he said - she looked down -

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then she just carried on.

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So she is actually dealing with communication breakdown.

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I don't understand where she hasn't understood the question.

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'..put it under the pillow, so then I put it on the pillow,

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'and then I got this.

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'Well, how'd you get that?'

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'Yeah, I-I-I...'

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Yeah. You see? He's asked her twice.

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-Yeah.

-And she's, like... Like that.

-Mm.

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-And you could see it.

-Mm-hm.

-It registered in her mind.

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There was that pause - a couple of seconds -

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and then she...

0:18:530:18:56

got herself back again and she, you know, carried on.

0:18:560:18:59

What Maiya is doing is she is assessing her world around her.

0:18:590:19:03

And I believe that with Paris,

0:19:030:19:07

what I've given her that's different is that

0:19:070:19:09

she can assess her world around her within the Deaf community,

0:19:090:19:13

and understand how to do it better...

0:19:130:19:15

-Mm-hm.

-..because she's given the tools to be able to say things like,

0:19:150:19:19

"Again, please. Can you say that again, cos I don't understand?"

0:19:190:19:23

She'll only do that because she sees other Deaf role models.

0:19:230:19:26

So she's copying behaviour, like kids do, in order to grow socially.

0:19:260:19:30

-Yes, she is.

-Yeah, I understand that.

0:19:300:19:33

What I'm concerned about is that...

0:19:330:19:36

if you treat Maiya the way you're treating her now,

0:19:360:19:40

and trying to keep her as equal as you can with the hearing sibling...

0:19:400:19:43

-Mm-hm.

-..I'm concerned,

0:19:430:19:46

because you can never make a hearing child out of a deaf child.

0:19:460:19:50

Come on, then, Maiya. Go and sit down on the sofa, please.

0:19:530:19:56

-Right, come on. Who wants to read first?

-Me, me!

-Come on, then.

0:19:560:20:00

The main place where Deaf children experience communication breakdown

0:20:000:20:04

is at school.

0:20:040:20:06

"The children found a...baby bird."

0:20:060:20:11

'Maiya's getting on fine at school at the moment.'

0:20:110:20:14

She is absolutely on par with her target, for her age.

0:20:140:20:18

Cheep-cheep.

0:20:180:20:20

How does it go? Cheep-cheep.

0:20:200:20:21

'She has to work that much harder'

0:20:220:20:25

to concentrate than all the other kids,

0:20:250:20:27

and she does get very tired by about 12 o'clock.

0:20:270:20:29

And she gets ratty and then she throws tantrums.

0:20:290:20:32

She throws more tantrums at school than any other kid - that's for sure.

0:20:320:20:35

That's because she's working really hard to hear what's being said.

0:20:350:20:40

"Tucker."

0:20:400:20:42

-Er.

-That's it - that's "after".

0:20:420:20:45

Looked after the...

0:20:450:20:47

-No, Maiya, you're actually guessing now. Come on!

-I don't know!

-Read it.

0:20:470:20:51

Maiya, come here, please. Come...

0:20:510:20:54

-I don't know what it says.

-"Josh..."

0:20:540:20:57

"..looked after..."

0:20:570:21:00

'I do have to'

0:21:000:21:01

face the fact it's very likely she'll need more specialist attention

0:21:010:21:05

as she gets older, so I'm kind of looking at everything...

0:21:050:21:10

to keep all my options covered.

0:21:100:21:13

"Said the bird, 'Cheep-cheep-cheep.' "

0:21:140:21:18

Oh! Very good.

0:21:180:21:20

-Hello.

-Hello, everybody. This is Rita, who's come to visit us.

-Hi!

0:21:240:21:29

Karen Smith is the head teacher at Mary Hare Primary,

0:21:300:21:34

a specialist deaf school.

0:21:340:21:37

Rita, would you like them to introduce themselves?

0:21:370:21:39

I would love you to.

0:21:390:21:41

Nine out of ten pupils go on to further education or university.

0:21:410:21:45

-My name's Heather.

-Hello, Heather.

0:21:450:21:49

And you're 11? How old are you?

0:21:490:21:52

-I'm nine.

-Oh, you're nine? And where do you live?

-In Milton Keynes.

0:21:520:21:56

-Is it far? Does it take you a long time to get to school?

-Sorry?

0:21:560:22:00

-Does it take you a long time to get to school?

-Yeah.

0:22:000:22:03

-Is it boring?

-Mmm.

0:22:030:22:05

Well, it's lovely to meet you all. Sorry I'm interrupting your class.

0:22:050:22:08

You can get on with whatever you were doing now. Ignore me. Ignore us!

0:22:080:22:13

CHILDREN SAY GOODBYE I'll stand here for a minute.

0:22:130:22:16

I think we're going to do a bit about our bones now.

0:22:160:22:19

'What would be the benefits for Maiya, if I was to send her here,

0:22:190:22:22

'that she can't get from mainstream school?'

0:22:220:22:25

It's only if you start noticing signs

0:22:250:22:30

that suggest that she's not happy and that things are distressing her.

0:22:300:22:35

We have a lot of tantrum-throwing with Maiya.

0:22:360:22:39

Is that when she hasn't quite grasped what's being said,

0:22:390:22:42

or gets the wrong end of the stick?

0:22:420:22:44

You know what I think it is more than anything?

0:22:440:22:47

It's when she's so tired

0:22:470:22:48

from trying to listen to everything that's being said

0:22:480:22:52

that she will snap at the slightest opportunity.

0:22:520:22:57

So I don't think it's her struggling,

0:22:570:22:59

but I think it's her struggling to cope in a hearing environment.

0:22:590:23:03

-So it's the concentration she uses, and then the exhaustion?

-Yeah.

0:23:030:23:07

Well, they don't understand why

0:23:090:23:11

they can't learn in the same way as their peers,

0:23:110:23:15

and why they're sitting in a classroom and can't write or read

0:23:150:23:18

-in the same way as their neighbour can.

-Yeah.

0:23:180:23:21

And they come here and all their peers are doing the same,

0:23:210:23:24

they've all got hearing aids, all look the same.

0:23:240:23:26

And they don't feel stupid.

0:23:260:23:29

It's really nice to see that they're all playing together, equally.

0:23:290:23:34

There's no odd child out here, which, unfortunately,

0:23:340:23:39

is the case in a mainstream school.

0:23:390:23:41

Whether it's...executed or not,

0:23:410:23:43

there IS an odd child out with a deaf child.

0:23:430:23:46

I love that they're all in the same boat, playing together - it's lovely.

0:23:460:23:50

I'm really surprised at how much Maiya could get

0:23:530:23:57

out of a place like this, but still not...

0:23:570:24:00

Not surprised enough to go,

0:24:000:24:02

"OK, you're going to quit mainstream school,"

0:24:020:24:05

but very reassured to know that if the time came and I needed to,

0:24:050:24:08

there are places like this available.

0:24:080:24:10

'But there is a conflict now, because I do know

0:24:100:24:14

'that there's somewhere out there

0:24:140:24:17

'that can enhance her learning experience.'

0:24:170:24:22

The majority of the pupils have cochlear implants,

0:24:220:24:25

an electrode inserted in the ear with an external processor,

0:24:250:24:29

that transmits sound to the inner ear through a magnet on the head.

0:24:290:24:33

It enables people who have little or no hearing

0:24:330:24:35

to hear those around them.

0:24:350:24:37

-You've got two cochlears, haven't you?

-I've only got one,

0:24:370:24:40

and I'm getting one soon.

0:24:400:24:42

You have to change the batteries every two days.

0:24:420:24:46

-But apart from that it's good, right?

-Yeah.

-Cos you can hear.

-Pardon?

0:24:460:24:50

THEY CHUCKLE

0:24:500:24:51

-Cos you can hear, right?

-Yeah.

-Yeah.

0:24:510:24:53

THEY SING

0:24:550:24:58

The little one on the left must be about your daughter... Maiya is...?

0:25:000:25:04

-They all remind me of my daughter, completely.

-Do they?

-Yeah.

0:25:040:25:07

-Immediately.

-Really?

-Immediately. Because she's...

0:25:070:25:10

all-singing, all-dancing.

0:25:100:25:12

THEY SING

0:25:120:25:14

This little rascal's about to run on.

0:25:150:25:18

This is the first time he's acted on stage.

0:25:180:25:22

He needs help from Opal, the little girl beckoning him on.

0:25:220:25:26

(I told you I'd get like this!)

0:25:260:25:29

-TEACHER:

-Here we go!

0:25:340:25:35

CHILDREN SING

0:25:380:25:41

Stop it!

0:25:410:25:42

'It upsets me because those kids just get on with life.

0:25:480:25:53

'They don't see themselves as having anything wrong with them.

0:25:530:25:57

'So it's their spirit, it's their perseverance.

0:25:570:26:02

'I just think they're gorgeous, and when I see little kids

0:26:020:26:05

'that remind me of Maiya, it's such a connection.

0:26:050:26:07

'It's like looking at my child.

0:26:070:26:09

'You see the really cumbersome equipment on their head,

0:26:090:26:12

'the lights flashing, and you think,

0:26:120:26:14

' "That probably will be my daughter in a few years' time." '

0:26:140:26:19

"Jack and Jill went up the hill."

0:26:190:26:26

MUSIC PLAYS

0:26:380:26:39

To try and understand and experience life

0:26:390:26:42

the way Maiya does without her hearing aids,

0:26:420:26:44

Rita and Theo are spending the day wearing custom-made moulds

0:26:440:26:48

that will block out sound to the same levels as Maiya.

0:26:480:26:51

BACKGROUND MUSIC BECOMES MUFFLED

0:26:530:26:56

SHE CHUCKLES

0:26:560:26:58

-It's so weird.

-Why?

0:26:580:27:00

SHE SHOUTS: Because I can't hear anything!

0:27:000:27:03

HAIRDRYERS WHIRR

0:27:030:27:05

-That's so weird.

-What does it sound like?

-Not a lot.

0:27:080:27:14

'I can hear myself breathing. That's pretty much it.'

0:27:210:27:25

'I can't hear cars.'

0:27:270:27:28

I just heard a really loud buzz. What was that?

0:27:330:27:36

VEHICLE REVS

0:27:360:27:38

I can hear that.

0:27:380:27:40

-MUFFLED:

-I'm not going to let anybody else cut it.

0:27:450:27:47

'You feel very isolated.

0:27:490:27:50

'I have a lot of banter with my staff and with other customers.'

0:27:500:27:54

I say hello to every customer, whether I'm doing their hair or not.

0:27:540:27:57

I've found today that I haven't done that.

0:27:570:27:59

MUFFLED POUNDING

0:28:020:28:04

'I think if I experienced this over a long period of time,

0:28:050:28:08

'I would probably become quite withdrawn.

0:28:080:28:11

'I'm just finding myself less interested in everything,

0:28:110:28:14

'because I can't hear what's going on.'

0:28:140:28:16

And therefore, my personality's just, sort of...

0:28:160:28:20

I've just gone into, like, a...

0:28:200:28:22

..about everything, whereas I'm normally quite up

0:28:230:28:26

and in your face, and...

0:28:260:28:28

Like, there's a joke at every corner, and I-I...

0:28:290:28:32

I can't be bothered, cos I don't know what anyone's talking about.

0:28:320:28:35

MUFFLED POUNDING

0:28:350:28:39

-Can you hear me now?

-Yeah.

-Can you hear me NOW?

-No.

0:28:390:28:42

-Can you hear me now?

-Yeah.

-You're really ugly.

0:28:440:28:47

I can't hear what you're saying - just a noise.

0:28:470:28:49

-You're really ugly.

-Huh?

0:28:490:28:51

-You're really ugly.

-I'm really ugly?

0:28:510:28:54

-THEY CHUCKLE

-Got it. Was that a guess?

0:28:540:28:57

What? I want a divorce.

0:28:570:28:59

-SHE CHUCKLES

-Didn't hear - what was that?

0:28:590:29:01

Help me out, son. Come on.

0:29:030:29:05

-What'd she say?

-I said, "I want a divorce."

0:29:060:29:09

Bit harsh, innit?! And you thought that was funny?

0:29:090:29:13

Well, it was quite amusing, yeah.

0:29:130:29:15

OK, lean back.

0:29:170:29:19

RITA SIGHS

0:29:230:29:24

If I couldn't take them out, I'd hate it.

0:29:240:29:27

For me, it was just more...

0:29:270:29:30

..apparent than ever that, if and when Maiya loses her hearing,

0:29:310:29:35

we find her an alternative way to hear.

0:29:350:29:39

Yeah.

0:29:390:29:41

For a child who can hear with hearing aids,

0:29:410:29:44

to go back to hearing what I heard today wouldn't be an option.

0:29:440:29:48

If Maiya loses her hearing altogether,

0:29:520:29:54

the only way to give her sound would be with a cochlear implant.

0:29:540:30:00

-WOMAN:

-'Jack, do you want to come and say hello?'

0:30:000:30:03

Anybody considering the operation

0:30:030:30:05

is advised to meet other people in the same situation.

0:30:050:30:08

-Found you!

-RITA SCREAMS

0:30:090:30:12

So, Jack, this is Rita.

0:30:120:30:14

Jack is three years older than Maiya and has the same hearing loss.

0:30:140:30:18

Let go! Let go of my...

0:30:180:30:21

Let go of my hand!

0:30:210:30:22

Hi! You're having an operation soon.

0:30:220:30:25

Cochlear implant.

0:30:250:30:28

-Do you know why you're having it?

-To make... To make it even louder.

-Yes!

0:30:280:30:32

And do you think it's going to be exciting when you can hear more?

0:30:320:30:35

-Yeah.

-Do you know what side you're having it?

-This side.

-That side?

0:30:350:30:39

SHE GASPS So exciting!

0:30:390:30:41

What do you think about cochlear implant, then?

0:30:410:30:44

Do you think Rita's daughter should have one?

0:30:440:30:47

-Yes.

-You do?

0:30:470:30:49

During the three-hour cochlear implant operation,

0:30:520:30:56

a hole will be drilled into Jack's skull,

0:30:560:30:59

and an electrode is placed in the inner ear.

0:30:590:31:02

It stimulates nerve endings that send signals to the brain,

0:31:020:31:07

which should recognise them as sound.

0:31:070:31:09

Jack's surgeon is Mr Pringle.

0:31:130:31:15

It's an amazing technological advance.

0:31:160:31:20

The cochlear itself has something like 30,000 nerve fibres

0:31:200:31:23

and 12,000 nerve endings.

0:31:230:31:25

We put a little plastic strip,

0:31:250:31:27

with anything between 12 to 20 electrodes on.

0:31:270:31:31

And just by stimulating those electrodes,

0:31:310:31:33

the brain is able to interpret sound.

0:31:330:31:35

So it is amazing. You can take someone who is profoundly Deaf,

0:31:350:31:39

so they can stand next to someone with a chainsaw and not hear it,

0:31:390:31:42

put an implant in and then they can speak to a stranger

0:31:420:31:45

on the telephone.

0:31:450:31:47

So was it an easy decision, deciding to do this?

0:31:490:31:52

We tried to get as much information as possible.

0:31:520:31:55

We went on the internet - we were researching everything!

0:31:550:31:58

It was just the hardest decision, because...

0:31:580:32:00

Did you come across cons and think, "Oh, no, I don't want to do it.

0:32:000:32:03

"No, no, he can't." Did you go through any of that?

0:32:030:32:06

-There weren't very many...

-Really?

-..I have to admit.

0:32:060:32:09

Did you give Jack a say in it at all?

0:32:090:32:11

Er...yeah, Jack had a big say, to be honest with you.

0:32:110:32:15

The first thing he said was, "Yes, I want it."

0:32:150:32:19

I now know that it's all to do with the frustration

0:32:190:32:22

of what life is like, not hearing like everyone else.

0:32:220:32:27

Why is it that you've decided to do it,

0:32:270:32:29

if he's still got a bit of hearing?

0:32:290:32:31

We do know that his hearing is likely to drop, er,

0:32:310:32:36

over the next few years. And we just feel

0:32:360:32:40

that we just want to give him every opportunity NOW.

0:32:400:32:45

He's coping. Why cope when he could thrive?

0:32:450:32:50

There are no official statistics

0:32:560:32:58

for the success rate of cochlear implants.

0:32:580:33:00

Are you warm enough?

0:33:000:33:01

Many recipients find them very effective.

0:33:020:33:05

Some find the change in sound distressing and in some cases,

0:33:050:33:09

the surgery doesn't restore hearing at all.

0:33:090:33:12

Jack's implant will be activated in four weeks.

0:33:140:33:18

Only then will everyone know if he's able to hear again.

0:33:190:33:23

Have they been told that the cochlear will give him

0:33:230:33:26

-better hearing than what he's got now?

-Yeah.

0:33:260:33:29

I do really want to see if we can find out

0:33:290:33:33

what the hearing is like,

0:33:330:33:35

not necessarily the level of the hearing but the sounds.

0:33:350:33:39

-How nice would it be...

-What difference is it going to make?

0:33:390:33:42

If we hear it and think "That's amazing,

0:33:420:33:44

"we didn't think it was going to be like that,"

0:33:440:33:47

-it gives us more confidence which gives her more confidence.

-Typical me and you.

0:33:470:33:51

I'm thinking we'll hear it and it'll sound horrific,

0:33:510:33:55

but let's be prepared for that.

0:33:550:33:58

-You're dreaming, but OK.

-I already have prepared for it being awful.

0:33:580:34:02

So I kind of feel like I need to know that information like now.

0:34:020:34:07

One, two, three, four.

0:34:080:34:10

Cochlear implants are controversial.

0:34:100:34:12

If Rita and Theo decide on an implant for Maiya, many Deaf people

0:34:120:34:17

will see this as a rejection of their culture and language, BSL.

0:34:170:34:21

Ow!

0:34:210:34:23

Before any decision is made about Maiya's future,

0:34:300:34:34

Trish Thompson wants Rita to meet her Deaf friends, Robbie and Jean.

0:34:340:34:38

I love the Deaf community, I love the culture, I love the language,

0:34:390:34:44

I love the richness of it.

0:34:440:34:46

It's a fantastic place to be.

0:34:460:34:48

BSL is a recognised language like French or German. It's my language.

0:34:490:34:55

BSL is worth so much, it's so valuable to us

0:34:580:35:02

because when I'm with Deaf people, we can communicate.

0:35:020:35:05

It's really easy to communicate.

0:35:050:35:07

I disagree with people feeling sorry for me, because I can do things.

0:35:070:35:10

I'm positive. I can achieve. Don't feel sorry for me.

0:35:100:35:14

It's a hard thing for a hearing person

0:35:190:35:22

to interact with a Deaf person.

0:35:220:35:25

Hearing people are very cautious.

0:35:250:35:28

They don't know what to do and they find it really difficult.

0:35:280:35:33

It's a very difficult bridge for a hearing person to cross

0:35:330:35:38

but as a hearing parent of a deaf child, she needs to cross it.

0:35:380:35:41

What do you do?

0:35:440:35:46

I work as a hairdresser.

0:35:460:35:49

-What do you do?

-I'm a teacher.

-Are you?

-Yes.

-Where do you teach?

0:35:490:35:54

-Recently worked in London.

-OK. Teaching?

-Special needs.

-Amazing.

0:35:540:35:58

Your speech is so good.

0:35:580:36:00

So, can I ask, have you had any involvement with Deaf culture?

0:36:010:36:05

I haven't had a lot of integration with the Deaf community

0:36:050:36:10

because it's never been... necessary, I guess.

0:36:100:36:14

We haven't evolved that way.

0:36:140:36:16

I think at the moment for a child of five, you have to be prepared

0:36:160:36:20

to meet the Deaf community, to learn about her culture.

0:36:200:36:25

I have concerns that if parents don't learn BSL or sign language,

0:36:250:36:30

in the future, that will die out.

0:36:300:36:33

I want to see the Deaf community continue.

0:36:330:36:36

Do you think that's because since then, technology has advanced

0:36:360:36:42

so much that now, doctors and clinicians are prescribing

0:36:420:36:46

much more artificial sound than going down

0:36:460:36:50

the old-fashioned route, which is BSL and Deaf community?

0:36:500:36:54

Do you think that's why it's dying out?

0:36:540:36:57

I think the doctors like to explore new things. I think, you know...

0:36:570:37:02

people are living longer.

0:37:020:37:04

It's the same as this with the cochlear implants.

0:37:040:37:06

They like to see things moving on but if it was my child,

0:37:060:37:09

and I had the same hearing loss as yours,

0:37:090:37:12

I wouldn't give them a cochlear implant.

0:37:120:37:14

At the moment, I'm pro-cochlear.

0:37:140:37:18

I'm also very pro a child who likes her sound.

0:37:180:37:22

She's not a child who likes to take her hearing aids out.

0:37:220:37:26

My feeling is it's like an abuse on a child

0:37:260:37:28

to put a cochlear implant in.

0:37:280:37:31

I completely disagree with it. That's my own view.

0:37:310:37:34

They're too young to have that

0:37:340:37:36

and they won't understand what that means.

0:37:360:37:38

-That's my feeling.

-I understand your point.

0:37:380:37:41

I wouldn't go as far as to say it's abuse

0:37:410:37:44

because abuse is when you don't love somebody.

0:37:440:37:46

Abuse is when you want to inflict harm on somebody

0:37:460:37:49

and I don't want to inflict harm on my daughter.

0:37:490:37:51

I wouldn't go quite as far as to say abuse.

0:37:510:37:54

It's similar for me.

0:37:570:37:59

'I was fairly resentful at being called an abuser.'

0:38:010:38:04

'People within the Deaf community'

0:38:070:38:09

do have a strong view and I don't disagree with them,

0:38:090:38:12

I just want to know why?

0:38:120:38:15

Give me your reasons as to why I should do what you say I should do.

0:38:150:38:18

I don't go around

0:38:180:38:19

screaming at deaf people to "put a hearing aid in!"

0:38:190:38:23

I don't go around screaming at deaf people to "start talking!"

0:38:230:38:28

So why are you telling me I should do what you do? I want valid reasons.

0:38:280:38:33

We only see things in our own terms so as hearing people,

0:38:330:38:37

we interpret things in hearing terminology,

0:38:370:38:40

and there are two things.

0:38:400:38:42

We interpret that if they speak, they're fine.

0:38:420:38:45

If they have equipment, they're fine.

0:38:450:38:48

Whereas on a Deaf point of view, that isn't fine.

0:38:480:38:52

There are other things that make the whole Deaf person.

0:38:520:38:57

Lions and tigers and bears, oh my!

0:38:590:39:02

Lions and tigers and bears, oh my!

0:39:020:39:04

Lions and tigers... Argh!

0:39:040:39:07

Maiya! Come here.

0:39:070:39:09

Lions and tigers and bears, oh my! Lions and tigers and bears...

0:39:090:39:12

In their quest to understand the implications

0:39:120:39:14

of giving Maiya a cochlear implant, Theo is going to Oxford University

0:39:140:39:18

to meet Professor Andrew King,

0:39:180:39:21

who has created a computer program

0:39:210:39:24

that simulates what people can hear with the device.

0:39:240:39:27

If Maiya couldn't hear music, or couldn't make out music

0:39:270:39:31

or it was all really monotone and she couldn't carry on singing...

0:39:310:39:35

It would upset me, it would probably upset Maiya in the future

0:39:350:39:39

because she loves music. You know, she's a performer.

0:39:390:39:43

And I suppose it's important to me to kind of be prepared.

0:39:440:39:48

You know, I feel like I just want to find out as much information

0:39:480:39:51

as possible about it so I know what exactly is going to happen.

0:39:510:39:56

'Our concern was music.'

0:39:560:39:58

Because we've never heard what a cochlear implant sounds like

0:39:580:40:01

we also don't know what sort of sound she'd be having.

0:40:010:40:04

What I'm going to do is to play you a sound clip,

0:40:040:40:08

which is a simulation of what a cochlear implant,

0:40:080:40:13

what sounds pass through a cochlear implant, might sound like

0:40:130:40:16

to someone who's using one of those devices to replace their hearing.

0:40:160:40:21

CRACKLY, MUFFLED SOUNDS

0:40:210:40:25

Just sounds like noise, doesn't it?

0:40:360:40:39

The rhythm and the tempo of the music are there

0:40:400:40:43

but what's missing is the melody.

0:40:430:40:46

It's a very sort of mechanical, almost Dalek-like...

0:40:460:40:50

-Can you play what that sounds like normally?

-Yeah.

0:40:500:40:53

VIOLIN AND PIANO MUSIC PLAYS

0:40:530:40:57

-Very different.

-Yeah.

0:41:020:41:05

So let's go to the example... of speech.

0:41:050:41:10

FUZZY: It looks like a very busy week here at the weather centre...

0:41:110:41:15

most of it's heading our way. It could be an interesting week

0:41:150:41:19

because it's turning pretty stormy...

0:41:190:41:22

If we play the real version of this...

0:41:220:41:24

CLEARLY: It looks like a very busy week here at the weather centre

0:41:240:41:27

because there's a lot happening in the Atlantic

0:41:270:41:29

and most of it's heading our way.

0:41:290:41:31

It could be a very interesting week...

0:41:310:41:33

I'm going to stop that because it goes on.

0:41:330:41:35

I don't need to hear any more of that, really.

0:41:350:41:37

Yes, it's hard to hear, to be honest.

0:41:370:41:39

OK, but in some ways, you've hit upon the key thing.

0:41:390:41:43

The more you listen to it, the better you get.

0:41:430:41:46

The brain is able to interpret this very crude,

0:41:460:41:51

to some extent distorted signal

0:41:510:41:55

and to learn to associate that with real speech sounds.

0:41:550:42:02

Yeah. My brain has got to try to make sense of it,

0:42:040:42:06

let alone my daughter's.

0:42:060:42:08

I think Rita sees it as, she's going to have a cochlear and that's that.

0:42:100:42:15

You know?

0:42:150:42:16

I don't think she's thinking too much

0:42:160:42:18

about what it's going to be like sound-wise,

0:42:180:42:21

because she's been told such good things about the cochlear.

0:42:210:42:24

Whereas, because I don't know about it, I kind of want to know more.

0:42:240:42:28

If she had a cochlear in one ear,

0:42:300:42:32

in her bad ear that's kaput anyway, that doesn't do anything...

0:42:320:42:37

At the moment it does.

0:42:370:42:38

It helps her with speech, even though it doesn't give hearing.

0:42:380:42:42

Fine, so if she had a cochlear tomorrow in that ear,

0:42:420:42:44

she'd have great hearing.

0:42:440:42:46

You wouldn't put a cochlear in, obviously,

0:42:460:42:48

until such time as she needs one, and at the moment she doesn't.

0:42:480:42:52

Maiya's future is what it's about, isn't it, really? And...

0:42:520:42:56

The way I'm taking it now is one day at a time.

0:42:560:42:59

I'm not going to plan her future, think about her future.

0:42:590:43:02

Maiya will make her own future.

0:43:020:43:04

Well, you are thinking about her future.

0:43:040:43:06

I am thinking about her future but I'm not thinking...

0:43:060:43:09

"She's going to be all right, she's not going to be all right."

0:43:090:43:12

-I'm thinking...

-You're not predicting her future,

0:43:120:43:14

you're thinking about things to put in place for her future.

0:43:140:43:17

I'm thinking about now.

0:43:170:43:20

-N-night.

-Night.

0:43:230:43:26

It's been four weeks since Jack's operation.

0:43:290:43:32

Nice to see you again. How are you?

0:43:320:43:35

Today, Jack and his family will find out

0:43:350:43:37

if he's able to hear again in his right ear.

0:43:370:43:40

Put this in your ears.

0:43:400:43:43

The audiologist is going to play beeps into Jack's ear

0:43:440:43:48

to see if his brain can recognise the sound.

0:43:480:43:51

FAST-PACED BEEPS

0:43:510:43:53

Cochlear implants are irreversible so if the operation

0:43:530:43:57

hasn't worked, Jack will lose all hearing in his right ear.

0:43:570:44:01

-Jack, listen. Can you hear anything?

-Can't hear it.

0:44:050:44:09

You can't hear it. OK, I'll point it out.

0:44:090:44:13

After eight attempts, Jack still can't hear anything.

0:44:140:44:18

Can you hear that now? Listen again then.

0:44:180:44:21

-WHISPERS:

-Beep, beep...

0:44:230:44:25

Hurray, you heard it, well done! That's fantastic.

0:44:300:44:33

-Go louder now.

-OK, so listen again.

0:44:330:44:36

-Yay.

-Good, well done!

0:44:390:44:42

Jack's brain is learning to recognise and interpret the sound

0:44:420:44:45

and will continue to do so over the following months.

0:44:450:44:48

Jack, you should be able to hear through your processor now,

0:44:480:44:52

it's me talking to you.

0:44:520:44:54

-Can you hear my voice?

-Now they have to see if Jack can hear speech.

0:44:540:44:58

Can you hear me? Do I sound a bit funny?

0:44:580:45:01

-Do I? Can you hear something?

-No.

-Can't hear anything.

0:45:010:45:07

We'll make it a bit louder then, that's fine.

0:45:070:45:10

-You can see I'm talking.

-He's being a typical...

-Jack.

0:45:100:45:14

Jack, did you hear Mummy and Daddy talking then?

0:45:140:45:17

Did you hear something? You turned around.

0:45:170:45:21

Did you hear me, Jack?

0:45:210:45:23

He's turned to you which indicates to me he's hearing your voice

0:45:230:45:26

but his brain isn't recognising what it is at the moment.

0:45:260:45:29

The reaction was lovely to see.

0:45:290:45:33

Especially when you say, did you hear that? It's, no.

0:45:330:45:35

Yes, you can.

0:45:350:45:37

'I definitely went into this'

0:45:410:45:44

thinking it was a big, intrusive contraption

0:45:440:45:47

and it's all a massive nightmare. And looking at Jack,

0:45:470:45:51

and looking at his reaction as well, it's going to change his life

0:45:510:45:55

and it's going to change his life for the better.

0:45:550:45:57

Cochlear implants are only suitable for people with severe hearing loss,

0:45:590:46:03

when hearing aids are no longer as effective as they once were.

0:46:030:46:07

Rita is at the Ear Institute in London,

0:46:070:46:10

to discuss with audiologist Bridget Harley

0:46:100:46:13

whether it's the right time for Maiya to have a cochlear implant.

0:46:130:46:16

This way.

0:46:160:46:18

'When is it morally OK?'

0:46:180:46:20

Where do you draw the line between telling your child

0:46:200:46:23

and letting your child make the decision?

0:46:230:46:25

Well, what do you think Maiya would want to say on this question?

0:46:250:46:30

How would Maiya feel if you said to her,

0:46:300:46:33

-"We're taking your hearing aids away for a week?"

-Devastated.

-OK.

0:46:330:46:36

So I would say...

0:46:360:46:38

-the bottom line is, we've made our choice.

-OK, super.

0:46:380:46:42

Which I hadn't done last time I spoke to you, had I?

0:46:420:46:44

-No. If I had an audiogram, I could tell you today.

-I have it.

0:46:440:46:48

Let me tell you quick whether she's a candidate for her right ear.

0:46:480:46:52

Because it might be worthwhile getting her implanted

0:46:520:46:55

on the right so that she starts getting used to the sound.

0:46:550:46:58

Yeah, while she's still got fabulous, please God, hearing in her left.

0:46:580:47:02

And then she can use acoustic amplification

0:47:020:47:04

and electrical amplification so she's got this transition period.

0:47:040:47:08

Yeah, OK. That's from today.

0:47:080:47:10

-Yeah, that makes her eligible for cochlear for that side.

-OK.

0:47:140:47:18

# Happy birthday to you

0:47:200:47:26

# Happy birthday dear... #

0:47:260:47:28

'I have learnt so much.'

0:47:280:47:30

'I went into it not knowing anything.

0:47:310:47:34

'Midway, I probably thought oh, my God, I'm being really naive,

0:47:340:47:38

'there's a lot I need to put in place for Maiya,

0:47:380:47:41

'with the sign language and possibly a deaf school.'

0:47:410:47:46

And now I've changed my mind again and I want to go,

0:47:460:47:49

I'm 100% sure, down the cochlear route.

0:47:490:47:53

I'm bringing her up this way, this is the way she's going to be

0:47:550:47:58

because of her upbringing, just like I am the way I am

0:47:580:48:02

because of the way my parents brought me up.

0:48:020:48:04

I don't want Maiya to have a cochlear implant now

0:48:040:48:08

because she's doing so well.

0:48:080:48:10

What we're hoping, which is very possible,

0:48:100:48:14

that she can get to maybe eight or nine years old,

0:48:140:48:17

where she understands it a lot more

0:48:170:48:19

and would want to have one, to help her hearing.

0:48:190:48:21

And that would be a better place to be for us.

0:48:210:48:24

Regardless of what anyone from the Deaf community says,

0:48:250:48:29

and I understand everyone has their own opinion,

0:48:290:48:32

I cannot fathom for the life of me, and I've tried,

0:48:320:48:36

that if sound is on offer why you wouldn't use it.

0:48:360:48:39

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