Captions by John Ling. Edited by Glenna Casalme. www.able.co.nz Captions were made possible with funding from NZ On Air. Able 2015 EASY-GOING MUSIC SERENE MUSIC BIRDS CHIRP When I know how to get places, I'd feel a bit better because, then, I'd know everything and know where to go. All right. Good work, mate. All right, keep coming. Right now, the idea of going walking on my own is... feels quite scary because I might make some mistakes. WOMAN: He was just starting out at school when you guys first came along, and now he needs to be quite independent and not rely on so many adults, so... it's quite frightening. (CHUCKLES) We're at the wall of Farmers. Having lots of adults around, I think it's better than going by myself. So, is it taking a long time to get over to the island? It's been incredibly fresh. DREAMY MUSIC Hello. Want to have a look at the camera? Hello, Shaun. How's it going? Good. Does it look like a fish? A little bit. 'Well, he's totally blind. He was born with no retina.' That's the fluffy bit. OK. Well, I'm Mike. Hello, Mike. Yes? He` He's right there. He's very adventurous little boy. Yeah, um, he's not afraid of anything. WOMAN: And headphones on your head properly. Can you hear yourself? OK, tell me what your name is. I'm Kyren, and I'm 5. DREAMY MUSIC He's very very intelligent little boy. At this stage, we don't wanna push him too hard to grow up, and we just let him explore. Because he hasn't seen, it's quite amazing to watch him with something new, because he get so excited, and his hands get so busy exploring. He has lost the sense that we see as most important, so he has to remember everything a lot better than what we do. GIRL: When he wore shoes, it's like putting a blindfold on you. He used his feet to, like, feel what he was on. Like, if he was on carpet and he'd know, like, if he was walking in the hallway and he'd reach the kitchen, there was wood on the floor. What's that fish got in his mouth? He has spikes on his head. Does he have a spike on this one? Yeah, he does, right there. You see? I understand what he's going through, so I don't treat him any differently than I would treat myself. I read him stories, usually ones I make up, because he likes to make up names for the characters. Did you give me toast? Uh, we didn't know he was born blind. It was when he was about 7 to 8 weeks old, he got, like, a sticky eye. So I took him to the doctor, and it wouldn't heal. His corneas, which is the clear part of the eye, they went cloudy. When that happened, they sent him straight up to the hospital to see an ophthalmologist. He pretty much diagnosed glaucoma straight away, and they took him straight into theatre. While they were removing the lenses of his eyes, they found this tissue and, um, they decided that the tissue was the retina that hadn't formed in his eyes. Here you go. You pop 'em on. No. Parenting Kyren is totally different from parenting a child... that can see. Why is it raining? Cos it is. There we go. All done. You have to teach him everything. You have to teach him how to wash himself, how to put his clothes on step by step. Here you go. THUNK! THUNK! THUNK! 'It's constant talking, telling him what you're doing.' It's a trailer. 'Using left and rights all the time.' What do you think that is? Is that its neck? Yep. 'Describing things. Trying to describe things.' What's that? That's the light. Yep. And now I wanna go to the garage. OK, you wanna find the garage? 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. I kind of describe it as it's a big ball of fiery gas, and it's so hot to touch. Is the boat here? Is the boat`? Is the boat here yet? We're going on a big, big boat. Are we stepping? I would love to see him live as normal life as possible and being able to achieve everything that he wants to achieve. I don't know anyone in Northland Kyren can role-model. So I've got in touch with Don at Waiheke, who was also born blind and lives a full and rich life. What did Mummy 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. SERENE MUSIC Hello. Hello. Stop here. What is...? Stop here. What is that? This is Holly. Do you wanna say hello to Holly? Hello, Holly. Yes, that's a girl. Whose garage is that? That's my garage. But is it` ? Is it off again? (CHUCKLES) Let me show you this. You have a look inside this 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? Hey, you've stolen the K! You have stolen the K! (CHUCKLES) You little tinker. Kyren is going to deal with the world through his brain, his hands and his ears. His ability to be able to feel, to identify, to tell texture, to learn to look for detail ` those are the things that are going to help him to flourish. And here's NZ. That's where you and I are. Right there. Are you there? Mm. Hello, are you in there, Kyren? I'm in Australia. You're in Australia, are you? Oh, OK. Come on, Holly. Take us fishing. Come on. Come on. You gonna hold on to her? Come on. Hold on to Holly, darling. Uh, getting about at 5, 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. The magic of childhood, of exploration, of the joy of finding out ` those are the wonderful things without any burden of restraint. Whoo! (LAUGHS) I thinks it was Wordsworth who said as we grow into childhood and into adolescence, that shades of the prison house draw in upon us, and that's very true. < WOMAN: Block A. That's Room One. Are you using your cane properly, Kyren? CHILDREN SCREAM, CHATTER RAEWYN: Kyren's 9 now, so there's a lot more emphasis on him to do more for himself. < Put your hand at your side. He is adopting that typical 9-, 10-year-old attitude, and he's getting... He can be quite stroppy at times and quite demanding, as opposed to when he was 5 and he just accepted everything. When I'm an adult, I won't take bossiness any more. I won't tolerate it. I'll just tell them, 'If you're gonna do that, leave me alone.' I'm gonna be the boss my own self or else someone's gonna still be going, 'Do this, do that.' Excuse me, mate, you forgot something. What have you forgotten? My hat. Yeah. Thanks. Adults are more serious. They wanna stop me playing. I want some people, if they're gonna go, 'Do this, do that; don't do this, don't do that,' to leave me alone. So D is up high, and where was W? Down low. OK, so find D. Kyren still has full-time teacher aide at school, but what we want to do with that teacher aide is to have her step back more ` to give the instructions and then step away. Kyren has been quite dependent as a young child and now is moving to becoming more independent. What's this one? You're a superstar. You found it. I don't know how you do that, but you've done it. OK, buddy. Um, you're gonna do your three-times tables, OK? Yeah. So from 1 x 3 through to 12 x 3. OK. OK. Put your hand up when you're finished, OK? OK. Awesome. COMPUTER SPEAKS His next major challenge will be moving into intermediate. So he will have been here six years, and it's stable and familiar, and everybody knows him. Our goal is to get that independence and that desire to... work on his own and be part of the class more, rather than being separate with a teacher aide. COMPUTER SPEAKS RAEWYN: He gets quite frustrated at having to go to school. If he comes across something he really struggles at doing, then he gets quite frustrated, an-and he gets upset, and he'll... say things like, 'Why can't I see? If` If I could see, I could do this.' CHILDREN SHOUT, CHATTER I just wanna be like the rest of them. Is there any way I can see again? Or is there any way I can see at all? What if there was no way? Then I would be sad for the rest of my life. Because... I'll be all lonely. I'll see you tomorrow for the last day of school, OK? OK. OK? Have a good night. You might wanna wash your face, OK? Wash your face now. REFLECTIVE MUSIC MAN: Independence for anyone is an important thing, and Kyren, especially ` to be able to develop and evolve and do the things he wants to do rather than depending on other people to decide for him what he is going to do. So Kyren has to learn a different way of navigating around society and around community. He has to pick up sensory information in a different way that we do. Are you done? (CHUCKLES) Hi, Kyren. Hi. SUE: To Kyren, he only knows what we tell him or what we show him. It's important to expose him to a lot of different people, different mo-modes of transport, different types of occupations so that he knows what's available and what choices are there for him to make. It's important that Kyren's world does expand. If you arrive somewhere, does he know how to get there? Does he know what you passed on the way? So building those maps of` of areas is part of that. All right, we're just outside Farmers now, Kyren. Oops, there was a space there. > Um... Come on. In you go. COIN CLATTERS, MACHINE BEEPS I've been learning to use the cane for several months. Sometimes not very good; other times, a bit better. OK. So, where are we now, Kyren? At the entrance to Farmers. OK, how do you know it's Farmers? Because it's got tiles everywhere. OK. We walk this way. Yep, and which side do we keep the building on? This side. What's that side? Right. OK, yep. Then we find the... corner of Farmers. Yep. We turn the corner. We square off. We follow the crack in the road until we hit the wall of the power meters. Yep. What we're working on today is trying to get Kyren familiarised with his environment ` learning about obstacles and, uh, things that can interfere with his route; learning a set route from one point to another and how to navigate from point to point. Aha. We found the corner. We square off, finding the crack. CANE RATTLES 1 OK, stop. It's... OK, go back. Following the crack. So... we're at the wall of Farmers. 1 Never lose that crack. CANE RATTLES 1 RATTLING CONTINUES And find our wall. Aha. There's the wall. OK, Kyren. I'm gonna shoot off now. OK. And I'll meet you where? The post office. The post office. See you there, then. To begin with, it was a hands-on approach. 'Right, Kyren we're going to go from one point to another point.' I reckon that is the entrance to the post office. On the route, we're going to name various locations, like the post office ` specific things that he remembers and also enjoys. Hmm... There's a bike there. Surprise! Surprise! I don't like using the cane, and I've had enough of it. WOMAN: Why don't you like it? > Because I don't wanna use... I don't wanna always carry it around. I wanna be free from it. You know, like other boys and girls... that are not blind. They go around normally without using a cane. He wants to run around. He wants to have his fun. He wants to have his fantasy. He wants to play. He doesn't wanna do serious stuff like training for a cane. That's boring. You know, it's just not kids stuff. We press the button. Going along by myself with no one by me, there will be heaps of people that I don't know, and there could be strangers that will come and say, 'Right, come with me.' CROSSING CHIMES OK, let's cross. Well, I would say, 'Never!' Or maybe could I just wear a big suit of armour with a sword at my side in case? So, we inject a lot of fun into it. I mean, like, his cane, we call a lightsabre because he hated his canes. LIGHTSABRE BUZZES, HUMS So he's now thinking, 'Well, it's actually a lightsabre, and if anyone comes along, I can zap 'em.' I'm gonna show you something really cool. And... LIGHTSABRE SWOOSHES DARTH VADER BREATHES HOLLOWLY DARTH VADER: I am the master. If you only knew the power of the dark side. LIGHTSABRE SWOOSHES ANAKIN SKYWALKER: You underestimate my power. EERIE MUSIC Come on, Kyren. It's time to get up and get dressed. One of Kyren's frustrations is he doesn't like to be independent, and he likes to take advantage of the kindness of other people, particularly with his caregivers and especially when they're new, and they will run round and try and do their best to do everything, and Kyren will play on that and use it to his advantage. You'll figure it out. Here's your toast, buddy. (GROANS) Let me just get the peanut butter. Oh God. Do I have to do this forever? Yeah, just o` just one go at it. (GROANS) All right. What goes on first? Butter. OK, so find the butter. (WHIMPERS) I really hate this. OK, and what do you do now? Um, like this? No, you're not holding the knife properly. That's it. 'So, the steps we're taking towards independence at home 'is getting Kyren to do things for himself ` showering, getting dressed all on his own.' That butter is just so stubborn. Keep going. You're doing a good job. (WHIMPERS) 'Yeah, trying to get him to learn to use utensils. 'He's not a big fan of the knife and the forks, because he's always used his fingers.' All right, have a look on your toast, where you're putting the butter. I'm putting it there. Yeah, so you need some on the other side of the toast. OK, put your peanut butter on now. For me, I always envisage that Kyren will always need support, because I'm a mum, and I don't want to see him getting lost in the world. But, in saying that, I know I have to let go, and he has to go and find his way. So I guess the older he gets, the less need he will have for a caregiver to be with him. But this is really boring. Is it good enough to eat? > (CHUCKLES) Yeah. I don't... I don't want to eat it. It's OK. I'll eat it. > Here. You have it, then. Here. Thank you. You're welcome. CRUNCH! Oh, it tastes really good. Come and sit down. Hang on. Come over here. There. There. So, which one are you wanting to do first? Uh, there's Darth Vader. OK. Then we need a space. Is that H? Yeah, then we need a space. I want him to do something with his life. I don't want him to constantly rely on other people. Like, I want him to find someone, get married, have a job. I don't want him to have to have caregivers for the rest of his life. What about a musician? No, I hate singing, and I don't want to be a` Bu-But musicians don't sing. Musicians play musical instruments. I don't wanna be a musician. OK, then you won't be a musician. I want to be nothing. No, but you have to be something. Thought you wanted to be a marine biologist? I actually didn't want to. How are you gonna have money? Well, do I have to have money? Well, if you have mon` If you don't have money, how are you going to have a house? And how are you going to... buy all those fish that you want? I don't know. Like, what if you wanted to become a ninja? Uh, I don't think being a ninja is a job. They don't have apprenticeships for that. But they do have ninja schools around the world, eh? I don't actually know. They might. They probably do, actually, but they're secret ninja schools. So, next year's gonna be a bit of a big change because I'm going to uni. Next year I wanna go all the way down to Dunedin, and me and Kyren are kind of like best friends. There's no coming home to Camren. There's no chilling out with her in the holidays, and he gets kind of ` I don't know ` anxious and upset when I'm away. When are you going to come back from uni? Well, you have... You know how you've terms at school? Yeah. Well, we have semesters. They're just like terms, and we have two of them. Yeah. And... I'll go down in... February. Yeah. And then... I don't know when the first semester break is, but there's a holiday, and then I'll come up for the holiday, and you should be on holiday then, too. Yeah, um, will we be able to...? Um... Oh. It's all right. Come here. OK. REFLECTIVE MUSIC You good? Yeah. MUSIC CONTINUES 1 I've been waiting to do this ` to go on this trip. We're gonna walk up here. We're just going on to the little ramp again, all right? You come in behind me. What's down there? OK, you've got some water on either side, and this is like a,... um, another, uh, walkway. Do you feel the atmosphere is different here? What can you hear? A bird. I can hear lots of birds. Can you hear lots? Uh, I don't know what bird that is. A fantail? I don't know. Kyren also attends the Blind Foundation. They discuss his frustrations and how to cope with them and how to deal with them, and he tries to figure out what Kyren's frustrations are. Kyren gets quite anxious, but, you know, in life, he can't always have everything mapped out for him. So he's gonna have to expect t-to... to learn to find his own way. Don't walk into the tree. < Can you feel it? Are they mangroves? < No, they're not mangroves. Going along by myself, feels like I'm gonna make mistakes. Like, just, um,... oh, I might end up in the wrong direction. Where is it? Oh, this way. REFLECTIVE MUSIC INDISTINCT CHATTER OK, so go this way. Raise your hand. Now, can you feel the bottom? Yeah. It's slippery, eh? Yeah. (SINGS) (GROANS) Right there. I help you so you can bend over a little bit. Where's that tui? Look. Like a trampoline, eh? Things could be in there. Are those little berries? What are these here? These little dots? Yeah. Those are the berries. Here you go. Cool, eh? Yeah. What`? Hey, Kyren? Come and have some lunch. Come have a seat, mate. (CHUCKLES) Come on. Sit down beside me. What`? What are you finding frustrating about the cane? Uh... What don't you like about it? That I have to... That... (SIGHS) Well, mostly being blind. I don't want to be blind. I wanna see. Yes, I know, an-and unfortunately,... Yeah? ...some of us... are just... blind, OK? I'm the same. Like, I'd like to see again too so I could drive my cars and drive my motorbikes and all that sort of stuff, but you are blind, and you have to accept that, and you have to learn everything you can to live independently as a blind person. What if we just decide to say, 'No, no, no, no, no, no, no, no, no, I'm not gonna be independent'? If you say no all the time, you'll just get left behind. Well, you would just be a left outsider. You wouldn't learn anything, and that's why it's important to say yes, yes, yes to everything, every opportunity. Because every opportunity you miss is one that you don't get back. You never get back? That's right. That's how I live my life. I've run marathons. I've cycled the length of NZ. I've done all sorts of things because I said yes to every opportunity. But what if you think you're afraid to do something? Sometimes we are afraid to do things, but unless we give it a shot, we will never know. But what`? Because could you say, 'Oh, I'm pretty scared of this'? But when you've done it, you think, 'Oh, this is lovely.' That's right. EASY-GOING MUSIC When I'm an adult, it's gonna be cool because I'm gonna be the boss of my own self... and I can make choices for myself. Nominations for the 8th Annual Attitude Awards are now open. For information and entry forms, go to... It's great to be in an audience where people are talking about ability and not disability. CHEERING, APPLAUSE Captions by John Ling. Edited by Glenna Casalme. Captions were made possible with funding from NZ On Air. Copyright Able 2015