The blessing of Down syndrome (My Perfect Family: Taonga)

Down’s syndrome, it’s when there’s an extra copy of chromosome 21. Because Taonga has Down’s syndrome, he has lower muscle tone and is taking longer to develop than your average child. Some of the physical characteristics of Down’s syndrome are smaller ears, the almond-shaped, slightly downward-sloping eyes. There’s a gap between the big toe in the next toe. So they’ve got these common features, but they also bear a family resemblance as well. Whanaungatanga, whanau and family is the core of everything for us. If someone needs help, everyone’s there. Every now and then, he’ll forget something or he needs a little bit of support, but he’s progressing beautifully. There’s something very endearing about him. He is a little treasure.

Captions by Faith Hamblyn. Captions were made with the support of NZ On Air. Copyright Able 2020. – (GIGGLING) – (LAUGHS) – Other side. (LAUGHS) I’m Miranda and I’m Taonga’s Mum. – And I’m Tyson, and I’m Taonga’s dad. – Ta-da! – Dallas is the oldest, he was 6 in June; Grayson will be 5 in 12 days, and Taonga was 3 and May. – Grayson’s got no ears. – (BOTH LAUGH) – That’s all there is to it; – he’s just got no ears. – He’s the crazy one. – Yeah. – Dallas is much more passive and gentle. He has what I call a Peitatude, which is like an attitude, – but… – (BOTH LAUGH) – for some whose surname is Peita. And Taonga is…


– The best. – (LAUGHS) – He is the best of them all. – He’s actually the easiest probably to manage, cos he can’t move yet. – (BOTH CHUCKLE) – Because Taonga has Down’s syndrome, everything takes longer. – Yeah. – All right, guys, it’s 6.30. Average day for us — well, it depends on the day. So, Monday, Thursday, Friday, I work. Take your nappy off, and then you guys can wake up Taonga, cos he needs to get up. Monday, Thursday and Friday mornings are a little bit ugly, because that’s where I’m trying to make sure we’ve got everything — bags packed, extra sets of clothes, lunches, the kids with their breakfast. Taonga has some medication in the morning. And then once he has that, he has to wait half an hour before he can eat. – Wakey-wakey. – That can get a bit hairy as well, depending on what time he wakes up. – Hug for Dallas? – Yeah. – Nice hug. – Time to get up. – Watch out. – The boys make the mornings hectic, because they’re just a little bit young to be independent, and Taonga needs even more support. Oh, good boy. Are you helping? He can eat by himself now, but I’ve gotta watch him, otherwise, there’s stuff everywhere or plates go sliding off his tray, and then it gets even more crazy. So, yeah, just the fact that they’re so young. I don’t know what I was thinking. Too late now, I guess. (LAUGHS) One of the things with Down’s syndrome is taking longer to pick things up. Every now and then he’ll forget something or he needs a little bit of support, but he’s progressing beautifully. Ka pai, Taonga. Hey, good boy. Great work. Taonga loves music. He loves singing, dancing. – (TINKLY PIANO MUSIC PLAYS) – Taonga. –

Anything to do with music that moves his soul, I reckon. And his booty. Wow. School. You know, you’ve only got one more week left of daycare? Taonga. I’m a pretty talented dancer myself. (CHUCKLES) I dance and sing and things. Well, not as well as him. Taonga Peita. – (UPBEAT WHISTLING MUSIC) – The biggest challenge for me is keeping on top of things. Right. Can I trust you guys to sit nicely for a little bit, eat your kai? Cos I might go now. The house has always been messy, perpetual mess. The lawns don’t get mowed, the dishes pile up,… Squidgie McSquidgiepants. …the garden is an overgrown wilderness,… Neither of you have got your seat belts on. …the laundry piles up,… Grayson. …don’t get me started. (CHUCKLES) Just keeping on top of the basic stuff. Oi, Dallas. Oh, the state of that floor. – (GRIZZLES) – Oh, Taonga, no! –

What did he do? – Took his shoes off. Do you wanna walk when you get to daycare? Yes? You need to keep your shoes on. Is everyone belted? – (GENTLE MUSIC) – At our 20-week scan, the sonographer noticed that Taonga didn’t have a nasal bone. And so we did a couple of other tests and went to see the obstetrician, and they said that there was a one in six chance that he would have Down’s syndrome. So we knew that there was a possibility. You know, you imagine what your child’s gonna be like, so sometimes I’d imagine another neurotypical boy, and sometimes I’d imagine a third child, who had Down’s syndrome. And so I was fine either way. – I just didn’t even think about it, cos oh, well, I had the other two boys. So I just thought, ‘Yeah, he’ll just be the same as them.’ – The only thing I had a bit of a worry about was that they noticed there was a small hole in his heart. And so they were monitoring that, but I was more concerned about that than the extra chromosome. When he was born, we decided he needed a special name. It took us a while. – But then we came up with Taonga. Taonga means treasure or gift. – BOTH: Yeah. – Hi, Emily! – Low muscle tone is very characteristic of Down’s syndrome. Taonga has particularly low muscle tone. The orthotics hold his little ankles and things straight and how they’re supposed to be supported. So if he hasn’t got those, his joints are a bit wobbly. The walking frame is to help his body learn what it should be doing when it’s walking. He has hyper-flexibility, so every part of the walking is an effort. – Morena. – I can do it. – Yoo-hoo! I’ve done my bit. – (CHUCKLES) – I have friends who know some of the daycares, and they recommended a few. And I went in, and I loved it. I just liked the vibe. – The boys were at another day care first, and then they were transferred to the one that they’re at now, and then, I think that’s when you talked to them about it, eh? – Yeah. That’s why I moved them. Yeah. I wasn’t confident that the previous day care was gonna do the best job, but I waited until he was off his oxygen, because Dallas and Grayson would pull it off him, and other kids would. And I don’t want them tripping over the oxygen and all of that sort of thing. So I decided that would be my indicator that he was ready, I guess. I felt bad taking him to day care, as all mothers do, I think — that guilt thing, but they’re amazing with him. They’re so, so good. ALL: # …tinana. # Mo o matou wairua # hoki, amine. # – They’ve taught me quite a lot. I’d go and pick him up, and he’d be eating a canned pear with his hands, and I had never given him hand-held food by that stage. So I’ve been learning from them as well. – Grayson and Dallas were here first, and then we slowly transitioned him into the centre. But yeah, it’s like he’s been here forever. He’s just Taonga. He’s part of who we are and what we do. – (GIGGLES) – I want bubbles. – Yeah, he’s got friends at day care. They do lots of role playing, I think, with dolls and building blocks and in the sandpit — just everything that all the other kids do. – I just sort of think his one will be more grunting. – (BOTH LAUGH) – Although, Waiora, who was here at the weekend, the teachers sometimes ask her what Taonga is saying, cos she knows. – (BOTH LAUGH) – Are you painting your face? Are you a spotty Taonga now? So, I’m his specialist teacher, so I’m hovering around. I try not to hover too closely, but I support Taonga with communication, getting confidence moving and walking, and just supporting him in his relationships with other children. Can you hold it while I go and turn it on, Taonga? Thank you. Ooh, look. He’s kind of like the heart of He Waka Eke Noa — everybody adores him. Everybody loves you, eh, Taonga. – BOTH: Yeah. – (CHUCKLES) – What colour is this, Taonga? – Purple! – Waiporoporo. Waiporoporo, purple. He’s just kind of responding to the environment in the same way that all the other children are. And we try and make all the spaces as easy as possible for him to manoeuvre around with his walker. There can be challenges with terrain and things, but the children are all really supportive and will help him by, you know, he’ll get down and shuffle somewhere, and then children will bring his walker over for him and things. So he doesn’t really feel like someone who’s super-challenged, cos he’s just so positive. – Taonga goes to day care four days a week now, because that’s how many days a week I work. My job is the SENCO, Special Education Needs Coordinator, at one of the local high schools here. I’ve been doing that for the last probably seven or eight years. So, I coordinate anything that they need. It might be helping with learning in the classroom; it might be liaising with the Ministry of Education, parents, making sure they get what they need to be successful in school. Nice. These are gonna be so cool going out. I think it’s OK also. Some struggle with behaviour; some struggle with attendance; some struggle with their learning. Normally, our students would come in, and they work independently on catching up with work that they’ve got to do, or sometimes they might do a subject and here rather than in the classroom, because being in the classroom is a bit stressful for them. Do you know, what other subjects, projects — do you know what you’re doing on projects at the moment? – Uh… – Forgotten? – Yeah. – OK. That’s all right. ‘Having Taonga gives me a unique perspective when doing my job. ‘As a teacher and talking to other parents, if there’s issues with teacher aids, ‘I feel like I can explain how hard that can be, managing that sort of thing.’ And we get you some pictures to help learn the words and understand what it is you’re learning. – Do you think that would be helpful? – BOTH: Yeah. – ‘I love it. I love the job. I love coming up with a plan and finding solutions for students ‘who otherwise might find school difficult.’ Oh, I don’t know what motivates me. Well, now I’ve got some motivation, for obvious reasons. – Taonga. – Yeah. – Sit down. – I am! – (CHUCKLES) – (CHUCKLES) – Taonga. – Yeah. – Eat your kai. When he was born, I think I was talking to his auntie, Tyson’s sister, and she was saying that she could see what he might be able to do for his cousins, give them experience of someone with differences. And I was thinking about that. And then I remember saying to someone, he’s gonna touch a lot of lives, this child. I don’t think I realised just how many lives he would touch. Nine! Good job. The Peita boys Facebook page, it started out as a messenger group with just aunties and grandparents and things. Good walking! But I kept hearing people ask me questions, so I decided to make a Facebook group, which I didn’t think would be very big; I thought it would be, you know, family and maybe some of my friends. – What do you say when Daddy’s home? – Daddy home. Daddy home. Yay! – I get people who comment who are from the UK, Europe — there’s people who comment regularly in Spanish. There’s honestly, people all over the world who just adore him, people asking about what I do to get him communicating or even the physical stuff, which is interesting, cos, you know, physically he’s not very strong yet. – Shall we put your shoes on, so you can practise walking? Shoes first? – Yeah. – OK. Up. E noho. Because he’s so engaging, I do get people asking about that. Oh no! Oops! The first thing I say is I’m not an expert, but this is what I do. – Oh man. – Oh man. – Shall we put you orthotics on as well? ‘I feel really uncomfortable when people say, ‘You’re such a great mum and you’re just wonderful,’ ‘cos I get lots of those comments. And it makes me squirm, because if Taonga didn’t have the capability, ‘we wouldn’t have been able to teach him what we’ve taught him.’ Shall we try again? ‘We just support him in his learning; rather than sit down and drill things into him, ‘we’ll try and teach him. he’s a natural communicator.’ – Pakipaki. – Pakipaki. – Hand. – And hand. – Pakipaki. – High five. Ooh! – (ENGINE REVS) – Come on, Taonga. Driving. – Don’t run me over, Taonga. I said to Dallas about a week or so ago, do you think Taonga is the same or different other 3-year-olds? And they had a wee think, and he said different. I said, what makes him different? What do you think is different about him? And he said to me he’s smarter than other 3-year-olds. And then we were talking about Down’s syndrome, cos I want them to know that Taonga has Down’s syndrome, because my concern is that they’ll be at school or out in the playground or something, and someone will make a comment, and they’re not prepared to answer it, I guess. – (GIGGLES) – Go and practise your flips. They still have no idea. But we’ll get there eventually. We talk about it every now and then. They just don’t get it yet. One of the kids at Dallas’ school said to me the other day, he’s got funny eyes, he’s got a funny face, – but his hair’s cool. – Mm. – And he was not being nasty, wasn’t being mean or anything; he was just… that’s what he saw, I guess. But Dallas and Grayson are so used to Taonga that they don’t see him as different; he’s just their brother. What do you know about Down’s syndrome? – Taonga did used to have it, and some other babies have it too. And one of Mum’s friends, Thomas, he has Down’s syndrome. (SIGHS) Kind of all sorts of babies have Down’s syndrome, but not that much. – Do you wanna push the button? Push the button. No, I don’t blame you. It’s a bit scary being in there with him, isn’t it? – He did have some in his nose. There was this big oxygen thing near his bed,… and, um, so we had it for Taonga, and every night, he had to have it so he could breathe properly. He didn’t used to breathe that properly. – You guys are different. – What do you mean? – You guys are different than Taonga, and you guys have different faces and different bodies, different legs, different elbows — different everything. – I think Taonga’s just about had enough. We might go and try something a little more calm and a little more zen. So, we’re going to introduce ourselves first when we go to the radio station. Hi. I’m Dallas. I’m 6. Hi. I’m Grayson. I’m 3. – BOTH: No, 4. – Oh, 4. Sorry. Hi. I’m Taonga. I’m 2. – No, 3. – Oh, 3. Sorry. After the song, you’ll say why we played it, why you like it, who’s the singer. And we’re gonna do a shout-out to Auntie Fatty. She asked if we can play Pakipaki Mai. So you’ll say, ‘This song is dedicated to our Auntie Fatty, who showed us this song. ‘We love you, Auntie Fatty.’ ‘Experiences are a big thing for me. ‘Dallas and Taonga particularly love music.’ Because I value what they enjoy, I had talked to a friend about the show on the radio. Nice. I guess I expose them to things that I enjoy myself. – Come on. – Come on. – Yeah. – Are you excited, Dallas? Beagle FM is a community based radio station. The purpose of it is to provide music for the kids. – Say, ‘Kia ora, everyone.’ – BOTH: Kia ora, everyone. – My name’s Dallas. I’m 6. – And I’m 4. My name is called Grayson. – The biggest influence in my parenting and my teaching is my five years or so at the school in Auckland. I learnt very quickly not to take things too seriously. – My favourite colour’s blue. – And our baby brother’s colour is green. – Seeing how a sense of humour and being able to look on the lighter side of life. And I think that’s influenced both my teaching and my interactions with students at school and my parenting, which isn’t always positive, because when my children do things that are a bit naughty, I can’t help but laugh. But I’ve taught them, now and it’s usually follows an F word that they say, ‘It’s only funny the first time, eh, Mum,’ because I’m one of those parents who can’t help but laugh. (LAUGHS) It’s not always good. – And the microphone’s up. And you say, who was that? That was? – BOTH: That was great. – (LAUGHS) That was great. And we like that song because? – We like that song because… – …we love Auntie Fatty. – Who else did you wanna do a shout-out to? – The kiako and tamariki. – And tamariki. – At? – At… – BOTH: …He Waka Eke Noa. – Say, ‘Hi, guys.’ – BOTH: Hi, guys. – Do you wanna say, ‘Hi, Auntie Nina’? – Hi. – Hi, Auntie Selina. – Hi. – Hi. And do you wanna say, ‘Hi, Wairoa’? – Hi. – Good boy. What’s our next song, guys? – Is everyone happy? – BOTH: No. – Are you happy? Why not? – It’s because I’m tired. – Whanaungatanga, whanau and family is the core of everything for us. Tyson’s family is so tight. They’ve got Nan, who’s the matriarch, Tyson’s mom’s generation, then Tyson’s generation, – and then all the great-grandchildren. – Yeah. Yeah, yeah. Um, and everyone’s… everyone knows each other. They spend time together, and it’s very important to everyone. If someone needs help, everyone’s there, and I think that’s probably the biggest one for us. – When he was born, my first thing was what people are gonna say or, like, think about him. Oh nice. You can switch first. Oh! Because I’ve seen it before, seeing kids with Down’s syndrome get bullied all the time. – Chicken. – That’s not chicken, that’s a mushroom. – Mushroom. – Yeah. Do you want it? No. – I was in the hospital with Taonga, and Tyson had been in, and then he went home. The next day he came in. and he was a bit quiet. I didn’t know what was going on inside his head or how he was feeling or anything, but I knew that when he held Taonga, he’d be OK. After the first time he held him, everything changed — the way he held himself, the way he talked; he was back to being just a dad again and not a bit anxious or shocked about what we’re being presented with. Grayson! – Brush your teeth. – (BOTH CHUCKLE) – # And up. And down. Your pants are falling down. # – (ALL CHUCKLE) – So many people, they love him, eh? – Mm. So many people. Mm. – And it’s all over the world. – Like, what? – (CHUCKLES) – All right, Peita boys into bed, please. (GRUNTS) You’re so heavy! – Right. – Right. Put your lights out. I love you. – (CLICK!) # Are you ready? Are you, are you ready? Are you ready to go to soccer practice? # Grayson, can you hurry up, please? You’re not even trying, so get dressed, Grayson! – Get dressed. Get dressed! Get dressed! Get ready! – Yeah, you sit up here for a sec. I think at the moment I’m lucky, cos they’re still young, and so we don’t have as many places as we might need to go when they’re teenagers, by which time hopefully they’ll be a bit more independent. – Whoo! Thursdays. – Thursdays. – CHUCKLES: Thursdays. Walking, walking. Good boy. Put your cookie in your basket. Good boy. We’ve got a specialist at Starship that I just usually have a phone update with every six months or so. We have physiotherapists through the child health centre who we see, it’s once a month, which is really cool, because she sees such big gains, now that there’s a month in between visits. He’s still slow with his physical stuff, eh. But he’s getting a lot stronger and a lot more confident. – He’s quite on to all his sign language. Yeah. – And speaking now. The hardest one for me was he took probably three times longer, maybe even more than the other two did to smile. That, I struggled with. But he got there in the end. It was worth waiting for. Where’s your brothers? Where’s Dallas and Grayson? – Up. – Wait. What? – Wait. What, what? – Wait. What, what? He’s so good at communicating now. He can tell me at the time what he wants to do. Do you want to walk or do you want Mummy to carry you? You’re gonna walk. Good choice. With Dallas and Grayson, I’m gonna be conscious that they feel that they are allowed to live their life as well, that they have their loyalty, whatever, with Taonga, but that they are allowed to do their thing as well. – All right. – Dallas and Grayson. – Dallas and Grayson. Come on, Dallas and Grayson. – I don’t want them to feel like they’ve gotta, you know, not go off and explore or not go to university or not do what they want to do, because they feel they have to be here with Taonga. – I think they’ll be all right. – They look out for each other, and I just think it comes naturally. They’ll go away and play, but they always come back and check on him, and same at daycare. Although the way Taonga’s going, he might just follow them anyway. – (BOTH CHUCKLE) – (SOULFUL PIANO MUSIC PLAYS) (MUSIC CONTINUES PLAYING) I’m really conscious that each child is different. Taonga’s got a friend who doesn’t communicate the same that he does, but he’s been walking for over a year, I think. And so I know everyone’s experience is really different. So I’m really cautious about saying it’s wonderful, and it’s this, and that’s that, because for some people, it is harder. However, just because you have a child born who’s neurotypical doesn’t mean you’re not gonna have your struggles as well. And that’s the point that I think is more important, not to assume that that extra 21st chromosome means anything other than the child has an extra 21st chromosome. They may struggle with things, they may not; they may have health issues, they may not; they may take a long time to walk, they may not, but it’s the same if you have a neurotypical child as well. – (GENTLE PIANO MUSIC) – (BOTH GIGGLE) – Taonga, he lives up to his name. He is a little treasure just by being who he is. – You’re such an egg. – Hey. Oh! – He’s just so charming. And he draws you in with his humour and his silliness and his fun. Inside the box. – It was oxygen. – Oxygen. – Yeah, you had to have your oxygen on. – The end. – The end. – Oh. – There’s something very endearing and precious and special about him, and I think it’s the vulnerability that comes with his diagnosis. – And I just find him… – Perfect. – Yeah. Yeah, pretty much. He’s a gift. – For Taonga’s future, I hope that… that he’s happy, whatever that might look like for him. I just hope people see him and love him for who he is and celebrate his differences. # Whoa. # Captions by Faith Hamblyn. Captions were made with the support of NZ On Air. Copyright Able 2020.

  Inside Outside: Cory Newman


You May Also Like

About the Author: quantriwebsite

Leave a Reply

Your email address will not be published.