1 Captions by June Yeow. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2016 UPBEAT MUSIC STATIC CRACKLES Hi, I'm Ranger. I live on a small farm in Okuku, Canterbury. I'm 10 years old, and tomorrow I will be 11. Me and my sister, Izzy, share this bedroom. She has Down's syndrome, and I have Crohn's disease. Heya! Izzy is very funny, and she is good at acting. She loves to act out the Frozen film,... Come on, Elsa. ...and she is always trying to get me to dress like Elsa. My dad's called Wayne. BOTH YELL, LAUGH He is really good at cooking, and he helps me practise my soccer. Oh no! Gillian is my mum. (SINGS) She's a movie director. And she is really good at looking after us. Action! ELECTRONIC SHOOTING NOISES GILLIAN: We like to do creative things together, like making films or making music together. (PLAYS DRUMS) A little bit of a different family, I suppose. We are a little bit crazy. # Da, da-da, da, da-da, da. # There's Dad! Hello. Are you making something, Izzy? (CHEERS) OK! Yep, they're all for you. Izzy,... Yeah. ...dad,... Yep. brother, Izzy. Whose birthday is it, and where is he? GILLIAN: 'Dad's, like, the fun guy. You know, we all have a good time with Dad. (LAUGHS)' How old are you now, Ranger? 24. (LAUGHS) 11. 11. 'When I get home, I'm always coming into a happy space. 'It's just the energy of all the people in the house.' I suppose I just love my family. You know, that's the thing ` I just, like` They're so cool We're pretty easy-going, but we've got our own little individual quirks as well. (CHUCKLES) We all have our own little way of doing things. But we laugh a lot, and I think we're all appreciative of each other's differences. ALL SING: # Happy birthday, dear Ranger, happy birthday to you. # Quickly, Izzy! MUM AND WAYNE: One, two, three, four, five, six, seven, eight nine, 10, 11! ALL CHEER Oh, it's a hard one. Blu-Tack! Yes! Finally I got Blu-Tack! He keeps asking for Blu-Tack. I'm going to sneak in at night and give Izzy a Blu-Tack moustache. LAUGHS: I hope not. IZZY: Moustache? Yeah. Moustache. This is my moustache. I've been wait` (CHUCKLES) It's a sock! Oh, yay! 'The relationship between Ranger and Izzy ` I think it is different to what you would get with siblings 'where there isn't a special needs involved. They are not as competitive.' Izzy. (LAUGHS) Happy birthday! Thank you! 'And whilst there might be some things that he misses out on, 'he gains something else which is equally as special. And that is just the nature of our family.' Thank you. Mwah. JAUNTY MUSIC We're about to feed the goats, and then we're gonna walk the dogs. Izzy, don't just give them it all. GILLIAN: We live on 20 acres. We've got a little bit of a hobby farm. The kids do help out with the animals. (SPEAKS INDISTINCTLY) She said when the dog does a poo, she gets a treat. Come on. Izzy will give me the dishes, and I will put them in the dishwasher. Done. (PANTS) Are you puffed? Yes. 'Izzy's quite good at getting us up after dinner. 'She's got a little routine. She likes to have music on and everyone has to have a little dance. JAUNTY MUSIC CONTINUES Yeah! Yeah! (CHUCKLES) INTRIGUING MUSIC Having Crohn's disease is sometimes a bit annoying when you have injections once a week. And if you're not in remission, you have to go toilet 12 times a day. Over the years I have tried a lot of different medicines. I've had to get good at taking pills. And my mum has made me try a lot of different diets. So, Crohn's disease ` it causes changes on the surface of the bowel. And it is a little bit like being swollen and red. Sometimes I like to explain it when people have a cut and it gets infected on the skin,... Yep. ...and it gets a bit sore and a bit red and swollen and puffy. And then if you move it, it will hurt, wouldn't it? And that same sort of process happens for Crohn's disease inside your tummy. They always check my tummy. GILLIAN: In the early days it was pretty tough. He was very very ill. We were having diarrhoea and blood, kind of 12 times a day changing nappies. Being tested for gluten and being tested for diary intolerance. We had to go through all of that before finally he was diagnosed Crohn's disease. WAYNE: I felt it was so unfair on him, that he couldn't have that initial life like a lot of other children did, where he could run around and really enjoy himself. So you just feel, like, 'Oh, what...' And you get quite frustrated because there is nothing you can do. He had one birthday there where he had a bowl of milk for his cake. You know? And everyone else had all the nice stuff. And he just was able to sip this bowl that we put a couple of floating ships in. (LAUGHS) I thought, 'You poor thing!' And I bet when he looks back at it now, you know, he realizes that it must have been a bit tough for him. Since I was 7, I've taken medication that puts my Crohn's in remission. Being in remission means that your Crohn's is, like, asleep. It was such a change when he got that medication, and he started turning into the boy he could have always been. And seeing him so happy. It's beautiful to see the personality he should be, as opposed to the little boy that was struggling. I'm at camp for kids with Crohn's and Ulcerative Colitis. ALL CHEER BOYS LAUGH 'This is a place where kids can talk to each other 'so they know that other kids have the same problems they do.' Are all of those are gluten and dairy free? No, those are gluten and dairy free. That label. And these are gluten-free. Uh, I'm just gluten free. You're just gluten-free. So you can have any of those. Yep. A few nights ago, me, McKay and, um, Brayden got drunk because we got such a sugar rush that we started, like, falling over each other, and we just, like, got really crazy. We never did anything. This was all a lie. It's all a lie. Yes, it's all lies. You didn't see anything. INTERVIEWER: So what happens when you guys eat lots of sugar? Well, um... You just get sugar rush. Sugar rush and diarrhoea. Are you not eating? No. Not hungry. Everyday life ` run to the toilet. (CHUCKLES) Do you go to the same school as your sister, Ranger? Well, my sister, Izzy, has got Down's syndrome, so it's kind` She's 8, but it's kind of like she 4 years old. So it's kind of both your brain and mentally. Like, she'll be` She's really short, and, um, she has trouble talking because her tongue is longer than everybody else's. She is quite smart for a kid with Down's syndrome. Half? That's half. FLUTE MUSIC We've got one perfect one, so I think we'll go with` No, I wanna stay. And action. All right. Do it in this one first. 'Izzy ` she's a little bit of a performer. She has grown up around cameras and things. 'And the acting side seems to come naturally for her. Yay. We want 250. That's a big number. 'What's actually surprised me is that she has also taken on board a little bit of the directing,' And she's very quickly, kind of, figured out how the film-making process works. JAUNTY FLUTE MUSIC OK. And cut. What's this? Oh, and cut? Cut. Cut. What's six plus two? That is nine. All right. Put that answer in. 'Down's syndrome comes about through there being an extra chromosome ` trisomy-21. 'So instead of two copies of the 21st chromosome, Izzy has three.' Three plus two? Is four. No, have a wee think about it. One, two, three, four, five. 'It messes up the way that the brain operates. 'So memory recall is difficult, which makes learning more difficult. Speech can be affected. 'Just being able to make the same sounds that we make can be quite difficult.' One, two, three, four, five, six, seven, eight, nine. 'We always knew we wanted to have a second child. Izzy was planned. We went for the 12-week scan and it was there they could tell something wasn't right. The lady quite bluntly said, 'We've done the sums and it looks like 'you have a one in four chance of your child having Down's syndrome.' To be honest, it hit me over the head like a hammer. I think I went into the toilets and burst into tears, to be honest. Just because it was so incredibly unexpected. I was more of a` I think it was a bit of a shock. And I don't really know what I was thinking at that point. I was` You know how sometimes things happen and you just go` your mind goes` well, my mind goes, you know` I couldn't think much at all. And then I was just trying to think about comforting Jill, I suppose. But I think she wasn't very happy at that point. But I do recall talking to my baby. And just, sort of, bonding with her, in a way. I didn't know she was a she at the time. But I remember just thinking, 'Hey, you're my baby, and I wanted you'. And, 'I'm your Mum ` now. And even though you're tiny right now, I'm still your Mum.' 'So, you know, whatever is coming to us, we will face that together.' So... Sorry, I will take a moment. (CHUCKLES) GENTLE MUSIC WAYNE: Early on, when you get that initial news, you think, 'What is it going to be like?' When you meet Izzy, met Izzy, it was` everything started coming` you know, all of those worries disappeared. GENTLE MUSIC CONTINUES The more, you know, she grows, and the more, you know, she was exuberant and just the most magical thing that's really happened. She's the, you know, apple of my eye. MUSIC CONTINUES I guess we are quite an 'intellectual' sort of family. So that idea, for me, of intellectual disability was quite confronting. And made me have to really challenge in myself what the idea` what the standards are of what makes you clever and what makes you intelligent. I had to really rethink that, and along the way, Izzy has really taught me that lesson. It's quite fun having a sister with Down's syndrome. INTERVIEWER: Why is that? Um, just because she likes playing games and partying, and she does a lot of crazy stuff. JAUNTY MUSIC Ahhhh! (LAUGHS) I like cars, Doctor Who. MUSIC CONTINUES (SNARLS) Ah, a human ` yummy. SCARY MUSIC (SQUEALS, LAUGHS) BOTH SCREAM JAUNTY MUSIC Get up! GILLIAN: I was aware that people with Down's syndrome learn more visually. And it dawned on me that actually using movies could've been more effective in this as well. And she's in there. JAUNTY MUSIC OK, so, we are going to make a 'Ranger in Danger'. You wanna do that today? Yes. OK, so we've gotta` You know the giant rabbit costume? Yeah. We are going to use that, OK? I look behind me, look back, he's not there. I look behind me again, and he's right` like, right there. Yeah. Izzy, what do you want to do? I want Frozen. You want to make Frozen? So in the meantime, Izzy really loves Frozen, and everything we do we like to incorporate a moment of that. Right, scooting around, Izzy, please. And... action! > (LAUGHS) I can't jump that far. 'So there was an interesting, sort of, side effect when we were making our little family movies. 'Izzy will watch these movies over and over again. 'And she'll pick up the language that's used in the movies.' So if Ranger says a line, in watching it, she will learn that line. And then we'll hear it coming back to us in everyday life. We're going to have to hunt that rabbit. Yeah. Izzy, you say, 'What are we going to wear?' What are we going to wear? I don't know. Let's look. Yeah. (SPEAKS INDISTINCTLY) Stand next to Ranger, and now fighting the rabbit. Rawrrr! Fight! BOTH LAUGH UPBEAT MUSIC (GRUNTS) And action! There's the rabbit. I don't know we must be imagining things. SCARY MUSIC BUZZ! Argh! There's the rabbit. DRAMATIC MUSIC Are you the Easter bunny? > Ranger, Izzy, where are those carrots? BOTH: Sorry, Mum, there's no carrots. The rabbit took them. Well, never mind. Let's have omelette instead. How about getting me some eggs, please? Uh-oh! (GIGGLES) PLAYFUL MUSIC PLAYS INTRIGUING MUSIC ROCK MUSIC GILLIAN: I made My first feature film in 2000 ` 'Snakeskin.' And since that time I've done a lot of commercials and documentaries, but I haven't actually done another feature film. But when Ranger came along with` and` with the Crohn's disease and then Izzy with her Down's syndrome, it was a just a little bit too much to keep making features, so I took some time out. So I think this is quite a good shot. Let's zoom in just a little bit. 'The kids are growing up a little bit, so I'm starting to actually get back into my work again.' ...like in a film, where there will be two or three images that just, sort of, set a tone for that scene. 'I think I'm a different person coming back into directing. 'I have a wider experience. I bring my family with me.' It's basically set in post-earthquake Christchurch. It's about a bunch of people who lost their homes in the earthquake and were sort of done over by the insurance companies. OK, picket fence. 'This film does have a Down's syndrome character in there.' You've sort of got the poor old sky... 'I'm a little nervous about taking on a new feature film.' And it's going to require a little bit of sacrifice from our family. There will be times where I just won't be available to the family for a few weeks at a time. Hello, Ranger speaking. Hello, Ranger speaking, it's Mum here. How are you feeling? All right? Remember you can take another one of those pills now if you need to. All right, just pop Dad on for a minute. Bye-bye. Hello. I just thought he'll need sheets for his bed. And there's a spare duvet in our room sitting in a the stripy bag. And it says 'single duvet'. So just use those rather than having to unmake his other bed, OK? Everything all right? (LAUGHS) Still filming, and about to go for food soon, so I'd better go. All right. Love you lots, and I will see you soon. All right. Bye-bye. Um, I suppose I am a director at home too. (LAUGHS) It's, um` Probably a bit` can't help it. IZZY SINGS, ROCK MUSIC PLAYS Yeah. I'm not sure about the throwing, because we might break something. Do you know what I mean? ROCK MUSIC PLAYS 'Sometimes Izzy just goes, "band practise", and we all run out. 'I don't really push them to learn notes and that sort of stuff. 'I sort of just like their energy, and they come in and just make some noise. 'And then sometimes it gets into a bit of a jam and something comes out of it.' I'm gonna mess this up. No., you won't, just give it a go. I'm helping. (LAUGHS) I don't even know when I start this stuff, so... Righty-oh. Yes, you hit it, Izzy! ROCK MUSIC PLAYS IZZY AND RANGER SING BOTH SING WAYNE: 'I have this, sort of, idea that I've always got to be doing something, 'because life is pretty short, and you've only got one. 'So I'm sort of on that trip, if you would call it.' ALL SING MUSIC ENDS That's quite loud. You` You've gotta calm down. FUNKY MUSIC # Da, da-di, da. # I have a pill once a night, and I have an injection once a week. And a blood test every three months. We are on right leg at number three. 'Having Methotrexate, which is sort of from the chemotherapy family of drugs, 'it does have some of the same side effects. So you do get nausea. 'The nurse came out and taught both Wayne and I how to do the injections.' And one white pill to stop the nausea. 'Sometimes he screams when he has the injection.' And a few times we've had tinnitus from sitting too close to it. So occasionally we will put ear muffs on. And I don't listen to him yelling. Cos, you know` And then I just wait five seconds, and I wait another five seconds, get it out. I sort of go in remote control. INTERVIEWER: How are you feeling now before it happens? Uh, scared. Why is that? Because sometimes it really hurts and sometimes it doesn't hurt at all, and I don't really know what is going to happen. (WHIMPERS) It's all right, Ranger. It's OK. Ow, ow, ow, ow! Ow! Ow! Ow! Ow! Ow! Ow! Ow! Ow! Ow! Ow! Ow! Ow! Are you done?! Ow! Ow! Don't worry. It's almost finished. MURMURS: It's OK. It's OK. Shh... (PANTS) Are you OK? It's done. it's over. (SPEAKS INDISTINCTLY) Can I go sit down? Does the microphone need to come off, or...? It's always horrible doing that, isn't it? You mean... I'm just wondering, because it seems like the last couple of turns I've had, they seem to hurt more. (LAUGHS) They do? I am doing it` I'm doing it` I'm doing it as gentle as I can. I mean, I've had ones where I do it` We take turns because neither of us really like doing it. 'As Ranger grows, it's important for him to start to take more control of his illness himself 'and to be involved in the decisions about what kind of medication he takes. 'We are very fearful about seeing him ill again 'and what that will mean for us and how we'll cope with that.' BAGS RUSTLE 'I worry a little bit about the future, particularly as Ranger gets older 'and the gap between Ranger and Izzy starting to widen a little bit.' OK. Good. 'For instance, when Ranger gets his first girlfriend, I don't think she's going to like that.' One. Two. Three. 'I am aware that there may be moments in our society 'when someone may tease her or there maybe obstacles put in her way 'that we are not expecting and that aren't fair. What do you need? I need help because it's really hot. 'I think the first time that Ranger really sees that happen 'and gets a real sense of the difficulties his sister may face in life,' I think that's going to break his heart a little bit too. TWANGY GUITAR MUSIC Izzy goes to North Loburn School. It's a great little country school, where they are incredibly supportive of her. This year she's moving up a class. But she's, sort of, stepping up into the slightly older kids. She's actually very very excited about it. ALL CHATTER TOGETHER TEACHER: Titiro mai. Whakarongo mai. I want you to tell your partner about some exciting food that you ate. 'I mean, I worry a little bit about the future for Izzy, 'about how she's going to be when she becomes self aware of the fact she's different. 'I mean, at the moment she's not really aware of what Down's syndrome means.' It's difficult for her, with Down's syndrome, to make friends. She hasn't really made close friends at school. Izzy likes playing hockey, and we sometimes play with her. You get the spelling right and everything. OK? > 'From time to time I've actually gone into the school 'and had a little chat about what Down's syndrome is. 'As the kids get older, the questions that they have become more sophisticated. 'They want to know will Izzy get a job? Will she have a family?' We know Gillian as...? Izzy's mum. And Gillian is going to just spend a little bit of time talking to us about Izzy and Down's syndrome. The main thing to remember is that Izzy is just like you guys. She really loves hockey, she really loves basketball. She loves dancing and singing. She's going to go to high school. She's going to get a job. You know? And it just takes her a little bit longer to learn things. And anything you can do to make her feel more welcome at school. You know, you don't have to be best friends. But just occasionally if you can, in the playground and stuff, include her in occasional games. Sometimes you may need to explain the rules a little bit more to Izzy. CHILDREN CHATTER 'When I look at the relationship between Ranger and Izzy, I kind of think, well, in actual fact, 'Izzy could well be the best thing that ever happened to Ranger. 'She makes him a better person, and I have no concerns whatsoever about the future. 'I don't think she's ever going to be a burden on him or on our family at all. 'I think she is an absolute blessing to us.' This is Liam, and this is Jayden. And we like to play basketball. INTERVIEWER: And what about your sister? Does she come play with you? Yeah, sometimes she plays with us. Izzy! (GIGGLES) ALL EXCLAIM, CHEER Tuffie, what are you`? No, Tuffie. Tuffie, away. OK, um, Izzy, I'll save some of mine for Tuffie. # This little miracle is yours to love. # These raindrops... # READS: 'Chapter one. Crack! The eight ball zoomed across the table 'and dropped neatly into the corner pocket. 'That's the game, Agent Rock Star.' You can't sleep up here, because I'm sleeping up here. And at night, this is what you do ` (SNORES). I don't (SNORES). # Da, da-da, da, da-da, da, da-da, da, da-da, da, da-da, da, da-da, da. Izzy. Ranger is up there now. Hubble bubble, toil and trouble. Fire burn, cauldron bubble. Now it's time to snuggle cuddle. Around my Izzy, a magic bubble. Gotta keep her safe and out of troubles. And to that Down syndrome we say, 'You're trouble and magic, and we love you, OK?' All right. Nigh-night, sweetie. Kiss? Good night. Goodnight. It's one of those things, isn't it? You know, you can't tell what your life is going to be. I'm just going, 'happy, happy, happy, thinking I have a bit of a life. But then you come along and you get something even bigger than that. # Oh, oh, oh, oh, oh. Whatever life throws at us, we just take a deep breath and find a way to keep going and have some fun and never stop enjoying life. # Da. # Captions by June Yeow. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2016 ALL SING ROCK SONG