1 (JAUNTY MUSIC) Captions by June Yeow. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017 I know that when I'm out in the public and I see a child with Down's syndrome or some other, um, disability, I` I have a big smile on my face, and I think, 'Oh, you're lucky.' But I think people` other people wouldn't think that way. But I` I had to go through this experience to change that viewpoint. (POIGNANT MUSIC) Mariska was tested during the pregnancy, but they didn't pick up on it. Yeah. So we didn't know until she was born, and she was literally` It was a caesarean section, and she was literally` Held above the` ...held up. Yeah. And I said to Mariska, 'Oh, she's got a` Yeah, she's got a very special look about her.' (CHUCKLES) I didn't even recognise it as Down's syndrome. Tipper truck. Tipper truck. Good boy. I was afraid about what it would mean to have a child with Down's Syndrome. I felt that I wasn't having my own child any more. Somehow I foolishly thought that he wasn't going to be like me and like his father, and that he was less ours because of that. Wow, Daddy! (YELLS EXCITEDLY) OK, hold on, hold on, hold on. It was all a bit of a whirlwind and happened really suddenly. And, yeah, we just kinda had to roll with it, eh? Yeah, it was a big shock, and we went through all emotions. Yeah, but, I mean, then he came out, and he was Lachie, and, you know... Ohhhh! (YELLS) Exciting! (YELLS EXCITEDLY) Good boy. Sit down on your bottom. On your bottom. Can you find Mickey's face? (SPEAKS INDISTINCTLY) Lachie's 4. Right from the beginning, we had the same expectations around Lachie in his life as` as we would for any other child. The older he's getting, the easier it is parenting him. And it's just so exciting to see him develop into this confident little wee guy who has clear likes and clear dislikes. What's this one? Bath! Bath. Is this the word? Bath. Bath. 'He has lots of words. He's stringing sentences together.' Car. Car. 'He's using sign. He's able to communicate his needs and his wants.' Banana. Banana. What's that one? Cow! A cow! Cow! Cow. That's the word. Cow goes...? Moo! Moo! As long as he's happy, healthy and progressing in whatever way, that's all that matters to us. (GENTLE MUSIC) (KNOCK AT DOOR, CHILD SPEAKS INDISTINCTLY) Hi, Daddy! Hello, Alexander. How are you? I made that. You made that? What did you make? Rice. Rice. AMALIA: Rice? That's fantastic. Rice? You made some rice? I don't need to make any now. Hey, how's it going? Good. Hi. How was your day? How was your day? Yes. How was your day? I had to go to a swimming lesson. You had a swimming lesson? Yes. You do lots of floating? Kicking. Kicking? Awesome. I think you only have to look at Alexander when he's at his best and when he's really happy and when he's giggling ` he just brings us so much joy, and we couldn't love him any more than` than we do. Ready? St` Whoa! That was a big one! Wow. 'The highs are a lot higher because any gains that Alexander has, um, attained have been hard won.' I think if you have a child with a disability, you tend to think the smallest milestones as quite a big deal. And so you still, as a parent, uh, feel the same way as those parents who might have what you call a 'normal' child. Um, in fact, I sometimes think that we have far more empathy for him, and his ability to meet them means a big deal, um, than maybe our other children. (CHUCKLES) (BABBLES) 'He's happiest when he's working and doing something, 'and he especially likes being a big brother.' (SPEAKS INDISTINCTLY) 'He sings them a goodnight song. He's taught them other songs, and we've told him how proud we are 'of him that he's taught them these songs.' Kiss for Sienna? Mwah! (GENTLE MUSIC) All right, Yma. Shall we get`? Let's` Shall we make a sandwich? You get a knife? Ooh. Big knife. Well, Yma is just a girl. Very girly. Very caring, loving. Very happy. Besides the girly side,... when she needs to, she can be very firm and very strict or just` or even bossy. Yeah, not a pushover. On it. 'Her pace is a little bit slower, so you need to be patient.' The way she can enjoy little things reminds me, then, to enjoy little things. (CHUCKLES) Why was that thing that I was working on so important when we can just be here and have a good time with each other? That's` That's the key thing. And then the rest is second priority. (GENTLE MUSIC) (LAUGHS) OK, come. All good. All good. (SIGHS) Good boy. Open. Good boy. So we've been going to the early` Wellington Early Intervention Trust since he was about 9` maybe 9 months. Hi. Just been amazing. It's also given us a whole range of tools to be able to use at home. Yeah, so what I've found really useful is, you know, the best ways to help him learn, and, you know, cos` learn to be a parent myself, but then having to, yeah, learn the best ways to help him learn as well, has been really good. First, we'll have our conversation, then we've got...? A penguin! Penguins. Perfect. Which one? Perfect choice. Thank you. So, we have a boy eating a...? Carrot? Banana. Who is sitting on the table? It was a little...? Boy! Perfect! High five! Boy! Every dollar you put into early intervention, you save $4 later on. Getting in early for kids, certainly from a communication perspective, if you can maximise communication early, you can minimise frustration. You can minimise behaviour problems later as a result of communication problems. Buh. Blue ` lips forward. Blue. Buh. Let's get them forward. Ooo... Blue. Beautiful work. Good boy. Down, down, down. Down. (GASPS) (GIGGLES) (LAUGHS) More? Ma. Better lips forward, please. 'More'. Ma. Can I help? Yeah? Can I help? Let's go ` 'more'. 'More'. (SQUEALS) Mm. Lips forward. 'Ore'. Where's your 'more'? Ore! Beautiful 'ore'! Red. Bed. Ball. Oh! 'We're also in the process of preparing for school transition, 'so the Wellington Early Intervention Trust facilitates that transition.' (CREAM SQUIRTS) Whoa! Whoa! Whoa! 'And it's really intense learning, and they're pushed to try new things, 'and if they have sensory issues or they have social anxieties or so on, 'you know, there's a whole range of things that they're negotiating.' Steady... No. 'Well, children with Down's syndrome have what we call low muscle tone. 'They often have an association ` muscle dyspraxia ` 'which is muscle sequencing ` being able to get the muscles into the right place.' I think it's essential that it's done at a very very early age, because they can then just build upon what they've learnt as they move through life. And they've got` Muscle memory is developed at a much earlier age. Ready? Crawl! That's it! Move your arms a bit more! Oh! Oh! Oh! Give me a kiss? (GRUNTS PLAYFULLY) (JAUNTY PIANO MUSIC PLAYS) # Alexander, can you sit down? # Alexander, can you sit down? # Good job. # So, the first thing that we're going to do today is say... GIRL: Hello. Hello. (PLAYS HAPPY TUNE) ALL SING: # Hello # to Alexander. # When Alexander was 5, he was no longer eligible to go to the Early Intervention Trust. So that's when it became really important for us to make sure that he had that continuity and still have access to a music therapist to support his development. Alexander is really motivated by singing, playing instruments, playing music-based games. But the goal within that is communication and social skills. (SINGING, INSTRUMENTS PLAY) # ...and when she comes. # 'So, music therapy is using music to develop non-musical goals.' (PLAYS CHORD) Go to sleep. ALL SING: # Are you sleeping, dragon? Yes, I am! # Are you sleeping, dragon? I am. Whee! # Are...? # Are you sleeping, dragon? No, I'm not! Go, go, go! Run, run, run, run, run, run, run, run, run, run! (PIANO PLAYS FAST-PACED MUSIC) AMALIA: He's fortunate to have a class of very kind children that do try and involve him. Obviously, the` the more friends a child has, the more comfortable they can feel. So that` that is very difficult when you see the` the lovely bonds that children have together, playing together and learning from each other, and then when you see how much harder it is for your child to interact with others and to approach others,... See you! I'll see you guys! ...it makes me sad for him. We would like him to be independent and be happy and to have some` That's the most important thing. ...and to have something that makes his life fulfilling. Um, and I think that's what everybody wants. Um, it just might not be exactly what other people have, but he'll probably achieve that. So I think it's important to know that it's not` He's not going to be the President or the Prime Minister or whatever, but he'll definitely achieve things that he will be proud of. (BELL RINGS) OK. Let's hang up our gear. (CHILDREN CHATTER) When we looked for her school... and we found this great teacher who was able to adjust` adapt their programme to make her fit in. That's real inclusiveness. Hello, Yma. How are you today? Are you going to go sign in on the roll and then do your work journal? Awesome. Thank you. Yma's a very happy, joyful person. Fits in quite, you know, naturally into our whanau in Room 15. She's coming more and more out of her shell, um, sharing her thoughts, and she's just a` just a pleasure. She's a bit of a sparkle, really, into our classroom. OK, so we're going to have a game of 'bring me'. OK? I know you've been working a lot with your numbers, OK, and I'm going to see what you can remember. CEES: The core principle of Montessori is 'follow the child'. It assumes that children are inquisitive by nature. You don't have to force them to learn something. You just need to` to guide their path. Yma, what would you like`? What quantity would you like to get? Would you like to get the 'thousand' cubes? Yeah. Could you please, Yma, bring me ` oh, how many ` three? Could you bring me three 'thousand' cubes? Yeah. OK, you go and bring me three 'thousand' cubes. 'There's lots of movement in there, so they have to hold the number in their head ` 'the quantity that they have to go and get. 'And that's why we purposely do the lesson quite far away from the materials ` 'so they're walking backwards and forwards with the material. 'That age group needs lots of repetition to build the memory. 'That's why we're always repeating, 'What did I ask you? What did you bring?' Oh, here she comes. Let's see what she brought us. How much did I ask you to get, Yma? Three. Three 'thousand' cubes? How many did you bring? How many did you bring? Shall we check? Yeah. Let's count together. 1000,... BOTH: ...2000,... 3000. You got 3000! Yeah! Yeah! What colour is four? Blue. Ooh, check again on your pyramid. Gold. Four` Oh! She ends up teaching me, I think, a lot about life. She's very easygoing, um, interested in what we're doing all the time, very social with the other children, and, um, I think reading is going to be her passion. Hey! Take my hand. Can you get your lunchbox and hat? Yes! CEES: I think it's important for any child to be able to communicate. That's the main thing with Yma ` being a struggle. Because, yeah, she communicates, but other people just don't understand it. She's getting as frustrated as well, if` if` if she can't get her point across. Yeah. Um, because she'd notice that we don't understand her. What's going on with your hat right now, Yma? Is your hat being naughty? Yeah! (GIGGLES) 'Without her communicating well, it'd be even harder to get, you know, friends 'or be able to play with other kids. And that's important for her. She enjoys that. Never really had her touch me, but... this is the weirdest moment of my life. (GIRLS LAUGH) Yma! Your hat's down over your face. Down's syndrome make, um, Yma way more different than she would be. But as well, it changes her a lot, but it doesn't change her being Yma. 'I get a real, kind of, hands on experience of what equity is. 'The education system's built around tolerance and empathy anyway, 'so, yes, I think they are aware of, um, the Down's syndrome, but they know Yma as Yma.' (ALL CHATTER) And me too? She's not 'the girl with Down's Syndrome'. She's Yma. She's a person. And she's a very special person. Well, yeah, she's got Down's syndrome, so that means a couple of things, so that's really not so important. That's not what defines her. Hi, cheeky. Mummy just has to go do a little bit of work. 'Being a` a single mum is a bit of a juggling act. 'It's combining the work responsibilities with my responsibilities to Lachie 'and around the home.' Oh, Mummy's just going to do a little bit. Come...? Mama. Mama. Come, Mama. 'I work from home, and I structure my working hours around Lachie's kindy hours. 'And I do a bit of work on the weekends and so on, just pretty much whenever I can.' (KEYBOARD CLACKS) The fries are coming. Which`? (SCREAMS) Which fries look good? Which ones look good? That! They're a bit hot. You try. 'He's quite rigid in his ideas about how things should be done and by whom they should be done 'and when they should be done.' No! (GRANDFATHER SPEAKS INDISTINCTLY) And he likes his yaya ` his grandmother ` to be sitting down at the table as well. Come here. (GRIZZLES) OK, what's wrong? (WHINES) And` Do you want Yaya to sit next to you? Yes! But she's not feeding you. No... You're old enough to feed yourself. 'We just learnt over the years that we needed to try and give him the stability of` of a routine. 'And, um, we do things like explain to him in detail what is going to happen the night before,' if something is different in particular ` making sure that that has been explained, sometimes even hyped up so that he perceives it as a positive thing. (GENTLE MUSIC) MARISKA: She likes to be in her, uh, little world with her` with her dolls and having those conversations with them. Wow! And sometimes you do hear some words. I mean, she` she` she can talk, but when she's in her own world, she just, yeah, she makes up words. But sometimes you pick up things, what she's talking about. Now sit down. (SPEAKS INDISTINCTLY) Sort of loses touch with her age group. Yeah. They move on, and they're not interested in Yma any more. And for Yma, their games are probably` although she finds them very interesting, uh, it's probably too complicated for her to` to take part in. Yma,... (SPEAKS INDISTINCTLY) And kids ` cannot blame them ` they're not going to slow down for Yma to keep up with. Her peer group is just` she's loses touch with them. But then she tries to connect with the younger children. At school she knows a lot of people, but there are few who will come and have a little play with her. Real friends, I think, is` is difficult. Yeah. Good boy. Let's go get you to pack your bag ready for when Dada comes. Come on, in we go. No! Come here. Put this in your bag. In. In. That's it. Here's your dressing gown. Nooo! (CRIES) Yeah, probably not the best. He's tired and grumpy. There's a, I think, a misconception that a lot of relationships break up if a child has a disability. And that certainly wasn't` wasn't the case with us. So we co-parent. I think we've worked quite hard to make sure that we keep the communication channels quite open, like, we text quite regularly and let each other know what we're doing and what's happening, and, um, we have, you know, like, kind of, a shared calendar. So I'll upload something into the calendar, um, that Choppy will` you know, will then have access to, and, um... ...and vice versa, so... Yeah. Yeah, so... I think it's just about` Sort of made that clear from the start, when` ...talking. ...you know, we separated, Lachie was the main` you know, our main focus and our one priority, so,... yeah, that's just how it's always been from day one,... Yeah, it works, eh? ...and how it's stayed, so... Hey, Lachie, Daddy's going to be here soon. Gotta put your rain jacket on. Cos look ` it's so rainy outside. (GASPS) (DOOR RATTLES) Who's that? Dada! It's Dada! Hello. Buddy. (GIGGLES) Hello. How's he been? Oh. Yeah, good. 'I think as long as he's in a happy, loving home, he's happy. 'That's what he's got in two places now, so... 'Yeah. 'It seems to be working quite well.' 'Yeah.' No! No? You wanna go home? Aw! You're going to Daddy's place. (WOMAN SPEAKS INDISTINCTLY) OK. Sweet. All done? Ready to go? Good boy. Say bye to Mama. Give Mum a kiss. Give Mum a kiss. Love-oo. Love-oo. Say bye-bye. ...morning about 6.30, 7? Yep. Bye! Say bye-bye. Bye! Cheeky! Bye! Bye! Bye! Love-oo. Have a good sleep. Cool. See ya. See ya. Bye. Bye. Goodbye. (DOOR CLOSES) (BLOWS KISSES) (BLOWS KISSES) (GENTLE MUSIC) Which way? Which way? JAN: 'I` I'm at a stage where I don't know if I want to remove his Down's syndrome if I could, 'because I think I'd be removing some very important traits of his. L. Ha ha. Give me five. Good boy. Well done. 'Yeah, I don't think you have to be a superhero to raise a child with a disability. 'You just have to give them the time and the love, and they'll develop quite nicely.' Watching. Looking up. Good boy. Looking up. Here it is. (SPEAKS INDISTINCTLY) I... I... ...want... ...want... ...lunch. ...lunch. Good boy. Give me five. Good boy. Well done. One of the main concerns is he's at a higher risk of having a range of health problems. And because I naively thought that the heart problem, once that had been fixed, that we had had our big challenges, and then we had more. And then more recently, Alexander's had some seizures. You just sometimes wonder what's next. (POIGNANT MUSIC) Where's Lachie? Where's four? (GASPS) Good boy! Look ` what's that say? (YELLS) Your bag. 'It can be a lot of work, but for us, this is just what our lives have always been, 'so I wouldn't know any different.' Here we are, Lachie ` it's green. Thursday. You gonna put that one up? Well done! (CHILDREN LAUGH) Can we put this one? 'We have exactly the same aspirations and dreams for him as what other parents do for their` 'for their children that don't necessarily have a disability. 'And it's about having a good life, it's about having access to ordinary everyday life experiences 'and pathways.' Hands, sweetie. The children just love him, and they interact with him as an equal. They don't, um, treat him as any different. Um, they know he can do the activities that they can do. He might just observe a wee bit. And they also know that they're role models for him. Yeah, you show me. And kicking. JAN: Parents worry for their kids. But that's true for almost any child. We` We all worry about our children. With Alexander, I think that I try to, like, emphasise on what he's done and what he's capable of doing more than 'what ifs'. Because, um, you just don't know what's gonna happen. You're not going to enjoy your child if you're always worrying about them, so it's really important to keep it in perspective and try not to think of the potential problems, I think. If you wanna keep sane, anyways. (UPBEAT MUSIC PLAYS) It's challenging to make sure that each child feels like they're getting enough attention and enough love. As the twins have gotten older, Alexander's bond with them has strengthened. They've found things that they have in common. And we are very fortunate to have a lot of support, particularly from our family. My mother stays the night, um, two nights a week and is here for three days of the week. And then my dad and stepmum come two days a week. What colour is the grass? Green, huh? And the red truck. And this is the wheel. And the wheel is in the muck. 'My Dad is, um, incredibly helpful.' You get your reward by seeing a smile on my daughter's face. Somebody has to help her ` Amalia ` otherwise she'll... eventually collapse. (CHILDREN GIGGLE, CHATTER) AMALIA: We could worry about him less, but we couldn't love him any more. And we couldn't enjoy him any more. We truly feel blessed to have him in our lives. But I understand why people might be afraid to do so, to go through that experience, but, uh, for us, it's been incredibly rewarding. And we feel really strongly that we love him huge amounts, probably more than I ever thought I could. More than we should. (LAUGHS) (LAUGHS) We should. Yeah. BOY: Should I just put this one? Yep, go for it. (ULULATES) (SPEAKS INDISTINCTLY) She's really nice, really loving. Um, she can get a little bossy at times, um, if we don't quite do things the way she wants them. Yeah. She sometimes gets bossy. Yep. I love her to bits. I think this family would be a lot different, um, without her. Oh no! That's mine! Um, I love Yma a bit, but` A bit? Just... this big. Come on. OK. No, she's amazing. One, two, three, hug! (MARISKA) PLAYFULLY: Argh! You give Yma a hug. Roar! (LAUGHS) Oh! 'It's beautiful how they care for each other.' (LAUGHS, PANTS) CEES: For him, it's really a challenge. And dealing with a sister who can't communicate, and, uh, not communicate that well ` those are tough calls for a little boy. (LAUGHS) OK? Yep. OK. If we would have known during the pregnancy` In hindsight, you wonder, had we known that she had Down's syndrome, would that have explained` would that have predicted the life we have now with Yma? No. So you wonder why you actually need that information. What does it tell you? Yeah, you're gonna have a child with Down's syndrome. But it doesn't tell you how life will be and how that person ` cos there's going to be a person ` it's going to be your` your daughter or your son ` what kind of person it will be. Yay! Yay! (UPBEAT MUSIC) He's taught us so much about who we are as people, and` and basically, um, he has given us an insight that we might not have had if he didn't have his condition. I think we feel, you know, better people as a result. I mean, having a child changes your life, but he's just changed a lot more ` like, major. Sorry. A lot, yeah. Whole range` I just think about how much I love him, and, just, you know... Yep. Captions by June Yeow. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017