Kyren and the Mysterious World of Sight: Growing up Blind

Put your headphones on your head properly Can you hear yourself? Okay Tell me what your name is I’m Kyren and I’m five He’s a little boy ready to explore Where are the other kids? There’s no one to share this world with him He’s the only child in Northland without sight He’s totally blind He was born with no retina He’s a very adventurous little boy He’s not afraid of anything I probably hold him back a little bit because I’m the one with all the fears and not him I try and let him do as much as I can and try and let go as much as I can, but I’m quite happy for him to try most things if it’s not too dangerous So far, mum’s helped him make sense of the world Now he’s at school, he draws on anyone he can to help him figure out what the bigger world’s about Hello Want to have a look at the camera? – Hello Sean – How’s it going? Good. Does it look like a fish? A little bit Is it just only ‘sprinkly’? There’s the fluffy bit My mic Are you the TV crew as well? Yeah. That’s what I do – And Sean? – Yes He’s right there So you’ve touched one of these before, haven’t you? What animal is that? No, it’s synthetic It’s not made from an animal It’s man-made You fell my… feel on here Because I wear those all the time So I can hear very accurately what I’m doing So I can put those on your ears – Always? -Okay, stand still Now you’re about to hear me and yourself, don’t you? Yeah Can you hear other things in the room? Because I have to listen for other sounds as well I have to listen to any traffic, or the wind blowing Can you hear the wind in the trees outside? Yes You don’t like dancing too, do you? I like Coldplay You like Coldplay – Stamping on the floor – Yeah [man laughing] I’ll go to my room and show you the red and blue fish, the spiky color fish [Raewyn] He just wants to do what every other little boy wants to do I keep my fishies in… here I keep them in here We all try to make sense of growing up and making the best of what we have He’s never had sight, but what he does know is what he hears, what he feels, what he touches, what he tastes, what he smells Don Mackenzie is also blind He’s lived through the challenges that Kyren faces A five year-old can’t explain it, but Don can help us understand what it might be like to live without sight Kyren is going to deal with the world through his brain, his hands, and his ears His hands are going to be extremely important His manipulative skills, his ability to be able to feel, to identify, to tell texture, to discriminate, to learn to look for detail, Those are the things that are going to help him to flourish My favorite place to go on the holidays is Bunning’s My favorite things are trailers Put your shoes on Kyren Here you go, you pop them on -Why are they too big? -Yeah Why can’t they come on? They will, here we go [Raewyn] It’s constant talking, telling him what you’re doing – Pull the toggles – No, the straps The straps [Raewyn] Using left and rights all the time Describing things, trying to describe things – No – Yeah, it’s raining outside – Why is it raining? – And the other arm Why is it raining? Because it is. There we go, all done

Is that what it’s supposed– Come on then, let’s go Is it raining? [Don] You are constantly alert, listening, feeling, smelling, looking for every possible clue you can eat from the environment – Why are we going in the garage? – It’s okay [Kyren] There I was in my car driving, driving, driving Then the boys in blue pulled up beside and I went in hiding No warrant for the car, no Rego to be seen, Whangarei car testing station is where I should have been That’s what the ad says on the radio Hang on, let this car go past Oh, it’s going to turn Okay, cross And step [Raewyn] When we’re out, to protect him, I just keep a very close eye on him He’s not left alone at all – Let’s go find the trailers – Little trailers – You want to find the garages? – No trailers – Eh? – No, little trailers Little trailers, right Mummy’s trying to find them [Raewyn] I’m always watching what other people are doing Because people don’t realize that he is blind and they will just walk on through him, or push him out of the way They don’t realise that he can’t see them coming to get out of the way Don’t touch it How about this one? Over here Is this another one? And this is a little one? Here you go It’s a trailer Mind the tow bar – What is that? – That’s a cone This is the trailer Is this a little one or a big one? It’s a little trailer [Raewyn] It’s quite amazing to watch him with something, because he gets so excited and his hands get so busy exploring – What is this? – What do you think that is? The thing that you tow to a car? Is it the connect? Yeah What’s that thing called there? It’s a handle that puts it onto the car, on the tow bar of the car Tow bar? Can you find where the wheel is? What’s the weather today? – It’s raining – Why? Want to find where the wheel is? – There, there – Yeah, and what’s that? The inside, that goes inside the trailer That’s… Where’s the lights? And what’s that there? That’s the light, yep Right there, the light [Kyren tapping the trailer] And now I wanna go to the garage Okay, you want to find the garages now? – Yeah – This way [sounds of running vehicles] [Don] He’s putting that imagery that he hears from other people together with his own experiences And as his ideas about the world mature, he will be blending what he’s been told, what he’s reading and what he hears with his own personal experience What color is that? What color is that? – It is the color blue – What color is that fish? – He’s blue – What color is that one? – He’s red – What color is his buddy, there? He has some black stripes [soft music] Look, I’ve got a fish that’s my favorite color What’s your favorite color? My favorite color is yellow and this fish is yellow What’s this fishy? He’s red and blue Is your favorite color red and blue? Kind of, what’s your favorite colors? What’s that fishy got in his mouth? Nothing [Don] Kyren will develop some concept of color, because people will talk about, “What a brilliantly red sunset this is,” “Oh there goes the red fire engine,” “Oh the grass is looking much greener,” “My word, these hills are looking brown today.”

Kyren will make sense of all that in his own individualistic way But it will have meaning And who’s to say that his meaning is any less than yours or mine? And a round flipper, and a little tiny tail Does he have sharp teeth? He probably would if he opened his mouth Might hurt when he bites your finger Could you see if he has sharp teeth? Okay, he has sharp teeth Does he? Yep, he opened his mouth for me and he had sharp teeth So what’s the fish… is he like? – What do you think? – A piranha? I don’t think he’s a piranha He doesn’t look like a piranha to me – But he has spikes! – Yeah he has spikes – He has spikey fins – And spikey fins [soft music playing] [Raewyn]] I think it’s great that he asks all these questions about what things look like It must be very difficult for him to envision it, but I think it’s really nice that he wants to know what things look like [soft music playing] Describing things is very hard I find that he comes home from school and asks about things that they’re learning at the time, he asks me about the sun and he can feel the heat from the sun so he doesn’t understand that it’s far away he thinks he can reach out and touch it But he asked me to describe the sun, so I kind of describe it as, it’s a big ball of fiery gas and it’s so hot to touch that it would hurt really badly Trying to describe clouds is a little bit harder Kyren has no ability to go to sleep on his own He is totally blind with no light perception whatsoever He doesn’t know day or night Good boy, arms through And the other one Okay, off to bed Chilly filly willy He has asked if other people can see He has asked me why he can’t see I just told him that his eyes are broken Alright, night Good night, see you in the morning. We have to go He did ask why his eyes were broken, and there’s really no answer I can give him until he’s old enough to understand [popping sound] [scratching sound] [sound of knife cutting on a chopping board] [sound of water pouring] Mummy, please may I have milk? – Ready? – My favorite thing at school is developmental – What? – Developmental, it means that you play a game [Don] Getting about at five,

I don’t think you really think about it You just kind of do it Sometimes it goes wrong, and sometimes you’re lost, but usually you’ve got people around you who will in some way rescue you, and you learn by your mistakes There’s a seat here so we’re just going to go around. See? [children talking noisily] – What color are those trees? – Green – And? – The branches are brown And what color is the other tree? Green, because most leaves are green And what color are the spider webs? [Don] When you move away from home, and from that which you are familiar with is scary You find yourself in places and situations that you’ve not experienced before Those about you seem to be coping and managing quite well and you’re not too sure where the four walls of the room are, and whether there are any steps and things like that Then you are a little bit more hesitant [children talking and school bell ringing] That’s alright, we’ll get to class – What if we’re late? – We won’t be – It won’t be okay if we’re late – Hold my hand [Raewyn] School was a really huge step in my mind, and it wasn’t just, “Okay he’s going to turn five and he’d go to school.” It was a pretty drawn out process – Do you need a hand with your bag? – No It was finding the right school to go to, and then speaking with the principal, and trying to find the right teacher that fitted Kyren “…has not been cleaned up very well.” [children talking] How are you Kyren? How are you today? Good I did have panic attacks about school because I had visions of him being left alone in the middle of the field and I didn’t like that idea so I made it a priority that in all breaks that he was to be left with an adult and not a child to supervise him And they implemented everything I asked for. It wasn’t so bad [Teacher] So, please use your sensible walking feet Watch out for all these adults in the classroom Use your manners [children talking] And that’s my chair [children making noises] – Okay, put your fingers in front – Is this E? [Don] What will Kyren’s frustrations be? Not being able to do, not being able to succeed, by failing more than succeeding, but he’ll come to terms with learning to deal with failure And that will build in him, “Let’s have another go, I’ll do it again until I get it right I’m not going to stop this until I get there.” – “M” – Well done. Space I was lucky, in other ways I was unlucky because I went to school in an institution, because that was the way things were done in those days And the downside of that is that one, to some measure, is separated away out of family and your neighborhood But on the other hand, you’re mixing with people who are like yourself [children shouting] [Raewyn] You know, a person who has seen that goes blind knows what the world looks like They know the shape of a tree, or what a car looks like They know how dangerous the world can be Whereas Kyren doesn’t know any of these things It’s just me telling him [children shouting] [Don] I think I first started to run holding onto my family members and mates

You know, “Come on, let’s have a run.” [Raewyn] He gets anxious when he’s going to do something he’s never done before – Could it stay like that Marie? – Yes For a little while [Don] I can remember thinking, “Am I going to be alright? I’m not too sure about this.” Ready? Go Good boy – Do you find that a bit scary? – Yeah – Is that a bit scary? – Yeah Can you give me a high five? How about a high ten? Have you ever heard of a high ten? That’s both hands I just made that one up, I don’t know if there is a high ten Can you put both hands like that against mine, and I’m going to run backwards, and I want you to run forwards but my hands are going to stay here – Is that alright? – Yeah -We’re going to walk first Keep your hands flat Come on, we can run, can we run? -Yes – Yes, run, run, run, run Three, two, one, stop Should we run back? – Yes – Okay turn around, that’s it Where’s our high ten? Keep your hands flat Three, two, one, stop [Don] Once you’d done it a few times, it was beaut. You are competitive, and you enjoyed the freedom of really running [Sound of the waves of the sea] [Raewyn] He’s not going to see some of the bad stuff that happens in this world He’s always just going to know what’s around him Unfortunately he won’t see the beautiful parts of the world, but he’ll be able to touch them Is the boat here? Is the boat here yet? Are we going on a big boat? Is the big boat waiting for us? – Where are we stepping? Where are we? – In the boat now – What did mommy tell you about Don? – Don can’t see – No, Don can’t see – Why? His eyes are broken just like yours But he can still talk He can still talk He can do everything just like you Why are we getting off? Why are we getting off? Because we’re here at Waiheke We’re on the wharf at Waiheke Island And we’re walking along the wharf and we’re going to come off it soon and get into a taxi – Is there a van? – Yeah – Is it a taxi? – Yes – What is it? -It’s a taxi – A van – But a van, yep – It’s a taxi van? – That’s right – What is it? – A taxi van Why is it a van? Where’s your car? [Raewyn] There is no other children in Northland that are totally blind, so it’s just Kyren in the Northalnd area There’s no one to discuss anything with We just sort of make it up as we go along Why don’t we hop in the police car? Oh no we don’t want to do that What if we do that? [Raewyn] When you first meet somebody, first impressions count, particularly on what they look like And he’s not ever going to be judgmental like that because he doesn’t know what a person looks like He’s got that benefit Do you want to say hello to Holly? Hello Holly – Yes, that’s good – Who’s garages are here? – That’s my garage – Okay step And it’s going up again [Don laughing] Let me show you this You have a look inside here and tell me, what can you feel in here? – Dots? – Yes. And what do the dots say? – K, Y, R, E, N – Yes! – Kyren! – Yes! – It says Kyren! – Who’s Kyren? You – Is that K? And what’s that? It’s just K. Hey, you’ve stolen the K!

You have stolen the K! You little tinker You’ve got the whole world in your hands, look at that – The whole world – And here is New Zealand That is where you and I are now And you go straight across to Australia, to Melbourne And here’s New Zealand That’s where you and I are Right there – There? – Yes, see? Good eh? – Are you there? – Hello, are you in there Kyren? I’m in Australia You’re in Australia are you? Oh okay It’s just great being with people like Kyren He’s infectious I suppose Because he wants to know, and he wants to know why, and he wants to know what’s next, and what are we gonna do now – There’s the bait – Are we doing a bit of fishing? We’re sure doing a bit of fishing mate How many fish are we? We haven’t caught anything yet – I’ll see if I can catch a fish – Yeah, it’s all right [Don] He was pretty aware of not getting too close of the edge of the jetty He knew about that I tell you what, throw one of them in Throw Good man! [Don] He’s got the makings of a great contributor He’s a very bright little boy, and the whole of society is the better for people like Kyren being with us See if I caught a fish I wonder if I caught a fish