Vision Impaired Parenting

S1 (Speaker 1)

This is Studio One on Vision Australia Radio.

S2

If you've listened to this show before or you listen to the other thing I do. You may well be aware that I can't stand Stephen Fry. But why? Mathew? People ask me. He's like you. Tall, intelligent, Englishman, well-spoken Cambridge graduate. The answer is simple. Whether it's because they have a vision impairment or not. My children love audiobooks. Specifically, they love Stephen Fry reading Harry Potter, which means he's normally on at least three different smart speakers in my house reading three different books. This is what it sounds like in my house just after the kids leave for school in the morning.

S3

This into the podcast lot. Right. So what do you do?
Think? Yes. I've been in your bank.

S4

Goodbye, everybody.

S2

Oh, yeah. You know, I like that stuff. Sincerely.

S5

Fudge the man in the...

S2

Alexa, stop. Alexa, stop.

S1

This is studio one on Vision Australia Radio.

02:01

S2

Hello, I'm Matthew... 

S6

And I'm Sam, and this is Studio One, your weekly look at life from a low vision and blind point of view here on Vision Australia Radio. On this week's show, parenting what it's like to be the parent of a child. Or indeed, in the case of this week's case study, multiple children who have a vision impairment. As we always say.

At this point, please do get in touch with the show. Whether you have experience of any of the issues covered in this episode of Studio One, or if you think there's something we should be talking about, you never know. Your story and your insight may help someone else who is dealing with something similar.

S2

Yes, and we'd particularly like to hear from you. If you're a parent of a child with a vision impairment or have something to say about what your parents did for you, our phone number, good for both calls and text, is zero four 507 834, which approximates to zero 4500 studio.

S6

You can also email studio one at Vision Australia-dot-org - that's studio1@visionaustralia.org

S2

We also accept complaints and heckling through the medium of Twitter. Vision Australia Radio can be found at At Radio Network and can be found at twitter.com.WhingingPom.

S1

This is studio one on Vision Australia Radio.

S2

Hello there Sam, how are you?

S6

I'm good, I'm good. I'm sort of sitting in this house to myself at the moment and enjoying my own company. Bizarrely enough.

S2

I'm much the same as you. So after seven weeks of school holidays, the girls went back yesterday and I don't know how. But yes, I've enjoyed regaining the space and getting my life back. But we're two days in and I sometimes somehow already seem to be three days behind, so I don't quite know. I'm not being too hard on myself though. There is a lot to do.

S6

Are you hearing phantom voices from the other rooms or anything like that? I mean, it has been a fair bit of time since they left the nest, as it were.

S2

No, I am not. I tell you what I'm hearing. I'm hearing lots of nice music on my Google speakers and alexas around the house, and nobody's turning them off so I can watch YouTube again, as well as reclaiming the space physically and reclaiming it in an audio way.

S6

That's an interesting thing. I mean, so I don't have any experience of being a parent, but when I was growing up, I had my spaces and everything else belonged to my mother or was shared. So if if I was going to do something in one of these shared spaces, as it were, it would have to be picked up afterwards. Otherwise things would disappear or be stepped on or whatever. So there was never a case, as far as my mother was concerned, about reclaiming anything.

S2

I have to say when they're not here, I'm more of having moved all my possessions across the world. I'm more of a fan of less stuff rather than more stuff. And I do go on a little mission and try and throw out one thing a day. Don't tell, don't tell the wife and kids. Listen to this week's show and it's not irrelevant what we've just been saying, but I'm afraid for the second time in a month, we haven't quite been able to connect with our intended guests. But this time, hands up. I confess it was all my fault, as Sam knows, and you may be gentle listener, I juggle being a stay at home dad and doing this job from home. So the holidays have been busy for this week show. 

We were due to speak about parenting with the subject of one of the favorite shows I've ever done I think I'm most proud of. Her name is Alice Conrad, and she was minding her own business working as a medical professional. Looking forward to the joy of welcoming her newborn baby into the world, and with all the emotions that go on that day. Within 24 hours, her baby had been taken. Taken away because there was something wrong with her eyes. Quite a moving story. We actually replayed the show over Christmas because I just remembered how important it was. But actually this time, even though she now has a new addition to the family and little five year old kit, it was actually my inability to manage my children, which meant we missed the interview. 

So I stuffed up there. But I'm catching up with Alice tomorrow and will air that interview in a couple of weeks. So in yesterday's diary meeting, Sam, we were kind of stuck with that a guest, weren't we?

S6

We were, we were. And I started going through my diary as well. So hopefully we'll get some pings and responses back there as well. There are a few people I've sort of left messages with and things like that, so we'll shall see.

06:46

S2

Yes, but we're not very bright. Sam. So going well, we promised everybody a show on parenting. We must be able to find somebody who's a parent to children with vision impairment. Surely this is within our capability and it's amazing.

S6

I mean, I've got with all the vision impaired people we know. Yeah, we're not necessarily in contact with their parents. And, well, I mean, ours have kind of probably all forgotten how what it was like to have a child with a vision impairment because it's been just so long ago. And, well, this was before computers were computers and before smartphones and before all the other convenient stuff was out there. The closest I can really find to any experience of parenting really was my experience as a coach. And in that way, I had several children pass in and out of my life, and the only thing that really I could compare to that was, yes, I had all the good bits of them. So I was kind of like the the best bits of Grandparenting.

S2

Yeah. So this is roughly the transcript of the conversation that you and I had yesterday afternoon. And then I went...

S6

Exactly.

S2

Hold on a minute. I live with two children who were born with congenital cataracts, and they're just bits where because you and I sometimes have to remind ourselves that we're qualified to do this job, don't we? Stuff. That's our everyday life. And then we realised that actually, for some it's a point of difference. And for some, hopefully when we're working at our best, it makes people listening go, oh, I'm not the only one that feels that, but sometimes you have to force that out. 

So what we're going to do today is I am going to sit down with my beautiful 11 year old twin daughters, Charlotte and Elizabeth, both of whom were born with congenital cataracts. Um, Charlotte had one strong one and one medium one, and that's how it got spotted. And then we realized that Elizabeth had two mild ones. Charlotte was under general anesthetic, having her first operation within nine weeks. And all that involves and there were many operations, Elizabeth, because it's a balance between risk and making sure as much site develops as possible. She didn't have her operations till she was five years old, but that's still a pretty chewy afternoon. But you've met them, haven't you? That's not what you think about when you meet my monsters.

S6

They're out there. I mean, they're they're typical girls of that age. And, you know, they have a good time. And yes, all the other things like, yes, sit in a corner and mope over their screens or whatever.

S2

Yeah, I hate you. Slam. That still goes on.

S6

And well, as I said, I've coached kids of a certain age and it's only going to get better. In fact, I'm going to hand you something here, I think. Approaching teenager hood. See it? Grab this. It's a rock. Now squeeze really, really, really hard. You might be able to get blood out of it.

S2

Yeah, yeah. You're quite right. Yeah.

S6

You work for. I work for somebody who interviews teenagers on a regular basis. And the conversations? Sometimes a drier than that very stone you're holding.

10:10

S2

Yeah, it is true. There is. I am a little nervous. However, one of the things I want to achieve, Sam. And I wonder if you have been through this. When I was a kid and it was discovered there was something wrong with my eyes, I was in the room and conversations were had, but at the time I was eight months old. And there's a certain extent to which I have had to, you know, knowledge that was, you know, assumed and frankly, the wallpaper of my parents lives. They may have communicated it to me when I was two for 6 or 8, but there was a bit as an adult where I had to go back and find out all of that stuff again. 

So part of my aim today, even if they do clam up, is that I want to talk to them about what it was like and perhaps give them a find out what their understanding of their vision impairment is, and also talk to them about it and let them know some of the stuff that happened, how it may affect their lives. Charlotte probably like me, she can't catch a ball because she can't see in stereo, and she probably won't be able to drive with. He might be able to drive, but she, which is it's an interesting line in the sand. That one, isn't it? Sand for everyone.

S6

I think it's actually a proverbial line because, I mean, it doesn't often matter with the rest of your life. But yes, that driver's license makes a huge difference.

S2

But it makes it easy for other people to understand. You know, I hope that's a good illustration of. The degree to which it can impact their lives and the impact on their two lives and how it's different. So yeah, I just want to have a conversation with them and maybe some tell them some stuff that I will probably have to repeat again later. But again, I think it's important to communicate that kind of stuff.

S1

This is studio One on Vision Australia Radio.

S2

Hello, [indistinct]. You're hot. Come on in. So. Hello. Guess what?

S4

I need your shoes.

S2

Your uniforms and your lunchboxes. You say it like that. I don't do it. Okay.

S3

They can't sound of it. They can't.

S2

It's invisible. All right. Can you both put down things that make noise, please? Because you're both playing with bits that will interfere with the radio interview.

S3

That's cool. What is.

S2

This thing? Sorry, Alan. Keys thing.

S3

Are you recording? 

?

I am now.

S2

Okay. Are you ready, bear? Are you ready with me? Joining us now, gentle listener, two people who are quite important to me. Both of them are currently hiding one behind a blanket, one behind a giant, squishy Pac-Man toy.

S3

Orange.

S2

Sorry, orange. Ghost Pac-Man toy. On my left, I have Charlotte Astrid Leighton, also known as the bear. Hello. The bear. Hello. And on my right I have Elizabeth Grace Leighton, who is known even at school as Whizzy. Aren't you with? So the school holidays are over. Day two of school. How's it all going?

S3

It sucks, I hate school. Did I let it die? Let it shrivel up and die?

S2

Charlotte, how are you feeling about day two of the school term?

S3

I want to sleep.

S2

You look... quite tired, my dear. Okay, so I'll try and make this as quick as possible. We'll get you in and out. What I wanted to do today was we were meant to make a show about being a mum or a dad to a kid with a vision impairment. Why's he got a question for you? Do you think you have a vision impairment?

S3

Yeah. No, I do not. I wear glasses.

S2

Do you know why you wear glasses?

S3

Correct. WhatsApp. I stuff.

S2

Do you know any more than that? Do you know what happened and when you got them?

S3

Lens grow tired. Okay.

15:36

S2

It is awkward, isn't it? We don't talk about this stuff very much.

S3

Are you ready for it? Hello? Hi.

S2

Charlotte. Do you? I've heard you say, but I've got a vision impairment. You're quite, you're a bit more prepared to admit it, aren't you?

S3

Yay!

S2

What does it mean to you?

S3

It's not admitting it. It's not admitting it. What do you mean? I mean, what do you mean, admitting it? Like what? She's more prepared than me. Shut up.

S2

No, I mean, well, no, it's...

S3

Means I'm better than you.

S2

I don't need her.

S3

Shut up.

S2

It means you're better at it than her. You're better having a vision impairment. But it's a really good question. Was it? It's like. Is it something again? When I say it? It means a guilty secret. What do you say, Charlotte?

S3

Mine is worse. So it's better.

S2

Oh, you've just knocked the microphone, you muppet. So can you give us a better definition of what a cataract is than whizzy cam?

S3

No. She can't. I'm. Shut up. It's basically better a film over your eye that makes it go fizzy. By fizzy, I mean blurry.

S2

But do you remember having cataracts?

S3

Oh, God. No.

S2

Okay. Why don't you remember what happened? Do you know or do you see this... baby?

S3

I was five and a half weeks old, and I got an operation. Baby.

S2

Okay. And what did they do in that operation?

S3

With the cataracts at my right, my right eye. 

S2

You don't have to put your hand up with...

S3

And gave me a new lens. Yeah, I knew that. I said that, I said lens.

S2

Yeah. So they gave you an artificial lens?

S3

[indistinct]. My ear.

S2

Is that what happened [indistinct]?

S3

No no, no. Yeah. It got taken out and I didn't get put back in. Yeah.

S2

They didn't put anything else back in. So unlike YouTube because a lens inverts the world like a lens on a camera. I'm the only person in this room. Who sees things the right way up. Hey, until that AG.

S3

By the right way, you mean like upside down?

S2

So the nature of the shape of the lens is that it turns the image upside down on the back of your eye, and then your brain interprets it and puts it the right way up. Mine skips out the middleman upside down. No, you're the right way up. Am I upside down.

S3

Am I the right way up now?

S2

No, you're upside down. Stop being upside down. You're not. I don't think you're taking this very seriously. How?

S8?

How?

S2

I'll show you. I'll show you a diagram later. So, Charlotte.

S3

Diagram. I want to know. Shut up. And I can see you through my lens. 

S2

So any lens will turn an image upside down.

S3

Woohoo!

S2

Okay, so Bear.

S3

What does that mean if my hand is like a thumbs up? It's actually a thumbs down. This is actually a thumbs up.

S2

Are you helping? I don't understand. Okay. I'm dumb.

S8

I did not.

S2

So we see. Does your does your eyesight problem? Does that affect you in daily life?

S3

But I want Ben and Jerry's.

S2

Okay, so what you're doing now is you're trying to get ice cream in exchange for your cooperation with this interview.

S3

I'm trying to leave.

S2

You're trying to leave?

S3

I don't not like it. I just, I'm confused. I want the Ben and Jerry's to tell me what it means. Okay?

S2

All right, all right. Will that help to...

S3

The Ben and Jerry's?

S2

Will that feed your brain? Yes. Okay.

S3

Ben and Jerry's cow. Okay.

S2

All right. Before you go. Yes. You don't wear your glasses to school anymore, do you?

S3

She's lost. No, I know where they are. They just look weird. You look great. What? I didn't say anything about you. You say every time that painting has a weird frame, you have a weird frame up your bum.

19:49

S2

Okay, now I can't put that on the radio. Right. So, Wizzy, just quickly. Last question.

S3

Oh, it's a flashlight.

S2

Where's he put it down?

S3

I didn't know was...

S2

He just quickly...

S3

Yeah. Yeah.

S2

So are you embarrassed by having to wear glasses?

S3

No. That's right. No.

S2

You do know that it's better for you to wear glasses, don't you?

S3

Yes. You get....

S2

You know, the reason part of about 50%. The reason I wear glasses is so that you. Because I used to wear contact lenses. So you don't feel silly wearing glasses. Do I look silly wearing glasses?

S3

No, I'm... plus, you don't want cornflakes in your eyes.

S2

Oh, you heard that. You obviously listen to the show. Shut up. No, you've.

S3

Shut up. No, you've been telling it for me for five and a half years of my stupid life.

S2

Yes. 

S3

Let's end it. 

S2

No. Where's he going? To get your ice cream.

S3

Thank you. Do you have any?

S2

I don't know, going over to the freezer.

S3

We still have my melon sorbet. Yeah.

S2

No, we ate that. Charlotte and I ate that while you were away.

S3

At least you ate the raspberry. That one made me sick. I like I usually like raspberry, but that one tasted gross. I shut up and leave the room. That made me throw up. Okay. All right. Don't try to put it in my sushi, Joe. But that made it even worse. So now I can't eat sushi. Just leave.

S2

You realise, like, I have to turn up to work tomorrow with something that's relevant to what I say. If anybody really wants to know what being, stop it. Or being a parent of a child with a vision impairment is like. It's a bloomin' nightmare.

S3

I cause chaos I can tell when I'm reading at night. Occasionally. Who is coming down the hallway?

S2

What do you mean? So you can hear.

S9?

Stop!

S3

Put that or shut up! I can tell the difference. You'll find footsteps.

S2

Well, in one way, you've proven my point. But in another way, you've both been useless.

S3

You useless.

S9?

Charlatan.

S2

Elizabeth Layton. Thank you very much for... well, frankly, nothing really.

S1

This is studio one on Vision Australia Radio. 

S2

There you go. Elizabeth. Grace. Leighton and Charlotte. Astrid. Leighton. Whizzy and the Bear. Right.

S6

That's what I also what I was thinking is, I can actually finish because there was one question I do want to ask you, which is interesting, which I thought would be a way of finishing the show as opposed to introducing it.

S2

Okay, cool. All right. Do you want to do that after the end credits, or do you want to do that?

S6

After as it is after the end as it is after the interview? I think it's a good way of doing it.

S2

Okay, cool.

S6

The one question I've always wanted to ask really is because, I mean, it's good you and Marita are one person with a vision impairment, one person without a vision impairment. And what I find interesting is, I mean, is your relationship to your daughters different because you have the same or similar disability? Then your wife says to them, I mean, is there a difference as far as the way that you treat each other and that kind of thing, or even understanding?

S2

That's a good question.

S6

That's what I say to last.

S2

Yeah. No. Fair enough. Okay. So... Marissa is an incredible mother and incredibly loving. And when it comes to time after operations, when the things were traumatic to put drops in their eyes, or indeed as a parent to, to to to check what their rashes or blemishes are, I'm not really the man for the job. So in that way, the difference between us being able to see and not being able to see is already different. 

When the girls were born, my they were discovered to have cataracts within 28 hours of being born. And we went to see the best specialist at the time, the head of ophthalmology at Great Ormond Street Hospital, the Children's Hospital in London, Isabel Russell Agate, an amazing woman, retired. Now, unfortunately, at and we took my mum with us and in 1974 my mum. Had to have that conversation on her own with no history of it. And as much as it hurt at the time, I was able to say, if this is what is happening to my children, then at least they will be the best resourced children in terms of knowledge that this could possibly happen to. 

Now, of course, there's an interesting thing there, and I mentioned it in the show that we did with Alice, and I'm sure we'll both bring it up again when we speak in a couple of weeks time. But there is also from my side. A tremendous we both sometimes feel sorry for our children when they're having difficulty with something, but we try and help them through it. But on my side, there's an element of guilt as well. When we thought that my eyesight condition was male only because of 1970s and adoption, and then we proved twice within 28 hours that it wasn't. 

So when I look at Charlotte with her screen or normally, my screen pressed up to her eyes in the way that I do and know how I remember Heidi saying this going, your wife, your wife going, I just want to look normal reading a book on a train. And when I see Charlotte with her face pressed up to a screen like that, I. It hurts. It hurts, and I blame myself some days, if you know what I mean. But as I hope we have proven, they are both normal, happy,  confident 11 year olds with quirky personalities. And you know what? To paraphrase my friend Felix, they're called Charlotte and Elizabeth, and they live in suburban Adelaide. They're quite lucky.

26:31

S6

Oh, yes, there could have been worse.

S2

It could have been much worse. Right. That's your lot for this week. Our thanks go to Charlotte and Wizzy.

S6

And of course, thank you for listening.

S2

Fortunately, we've got our act together now and we've got a couple of very interesting shows. Oh, I remember what the third one is, Sam. So next week we'll be talking to Sareen, who is the 16 year old artist who basically blew everybody else off the stage at last year's White Stick Fest, the music festival on International White Cane Day. The week after that, we've got A-list Conrad and get this, I've booked my flights and I'm going. To see the wonderful the show's fairy godmother. I'm going to go and see Emma Bennison in Hobart form. Wow. Yeah. So I'm going to go I'm going to go down and spend a little bit of time with her in a couple of weeks time. 

Interestingly, the other way round, she and her husband, Vaughn are both blind and their children are sighted. So that's a totally different show from this one.

S6

It is. It is. Yes. So between now and then, please do get in touch with the show. Whether you have experience with any of the issues covered in this episode of Studio One, or if you think there's something we should be talking about, you never know. Your story and your insight may help someone else who's dealing with something similar.

S2

Phone number good for both calls and text is zero four 507 83404 500 studio.

S6

You can also email studio one at Vision Australia-dot-org.

27:57

S1

Vision Australia Radio gratefully acknowledges the support of the Community Broadcasting Foundation or Studio One.