- GEORGIA: I'd describe my whanau as a very unique bunch of people that create te whanau Latu. Api, he just lights up the room. Everywhere he goes, his presence is felt. I describe him as a young rangatira. - ANNA: My children are growing up knowing who they are as Maori and Samoan children. - Argh! (GIGGLES) - Argh! Silly! - We have a busy life, busy whanau. - What I can say for me as a Maori woman seeing my child is that he is absolutely a taonga, he's precious, he's come here to teach me things. Captions were made with the support of NZ On Air. www.able.co.nz Copyright Able 2023 - Wow! - (GASPS) The parkies! - Wow! - API: Yay! - Yay! - (LAUGHS) - We have learned a lot about Down syndrome through Api. He's, uh, cunning. - (LAUGHS) - Come on, then. - He's strategic. - Mm. - Like, he's clever about what he wants and how he gets it. - Yeah! - Wee! Yay! - But he does it so nicely that you kind of forgive him for the naughty things he does. Yeah, he's cool. Compared to some children who are born with heart problems and things like that ` he had none. And so we were kind of very blessed that he was a chubby little healthy guy. - Hold on. Hold. Hold this. - I wanna go home. - Pupuri. - You got him? Good girl, Kys. - You got him? - Partway through his pregnancy, I thought I'd lost him as well. - Whoa, whoa! - I was dead set he'd gone, because, um, I was bleeding heavily with him. Glub-blub-blub-blub-dub-dub. And so Api has come out with this big philosophy wrapped around him that says he can do whatever he likes and he'll be OK. (ALL LAUGH) My children are both Maori and Samoan. I'm Maori and Pakeha, so they're Pakeha too, and we're a blended whanau. (CHILDREN SHOUT HAPPILY) I work at the University of Otago as a senior Hauora Maori lecturer. I'm a jack of all trades, I guess ` mum, a senior lecturer, a community person, whanau. So everything we do is based around making a difference. - I don't really see much disability in our cultures. - When we do, we get excited. - Yeah. If we see another Down syndrome, it's like, 'Oh, hon, hon!' - (GIGGLES) We're a bit over the top. We wave and carry on. We get excited. - Yeah. And then they all just look at us like... - (LAUGHS) 'Who are you?' And cos Api's non-verbal at 4 years of age, we meet other little kids who are` 'Blah, blah, blah, blah!' telling you great stories. And Api's a chilled guy ` when he wants something, he'll let you know what he wants, but it may be in a flap or it may be in a sign language of some sort. And then as he's got older, he's been a little bit slower to do things. The first thing we noticed was that he wasn't walking like everybody else at the same age. At some point he may or may not speak, but he will need to be able to find a way to make other people more comfortable with him. Yep, step down by yourself. Good work. (EXCLAIMS) Ha-ha-ha! - (SHOUTS TRIUMPHANTLY) - Crazy one. Oh, be careful, that's... That's a crazy one. This way. # Dum-bah-dum, bah-dum. # Bah-dum-be-dum, be-dum! # - Da! Da! Da! Da! Da! - You're doing a lot of digging up. Wait for it. Beep, beep. Oh, great. Good scooping. He's just the best. I often say he's my favourite and the girls get jealous about the fact that I think he's my favourite. Where's your toes? Where's Api's toes? There! I see it! Yay! I guess I've been flying that flag of Hauora Maori for so long I got quite a fright when Api arrived and I was like, 'Shucks, there's so much more work that needs to be done 'for people with diverse ability.' I was having an elective caesarean; I knew the date he was coming. The midwife came over shortly after and she placed Api on my cheek and she said, 'Anna, I think Api might have Down syndrome.' I said, 'Oh, cool. How will we find out?' And she said, 'You're the only person I know that would reply like that.' Two days later, the test results were back, and a student of mine who I'd taught in medicine came to my bedside and said, 'Anna, 'I'm really sorry, but it seems that Api does have Down syndrome.' And I just looked at her and I was like, 'You're sorry? Like, 'What? You're not giving bad news to me right now. 'You're telling me the results of my tests that I want to know 'so that I can give my son the best opportunities in life.' And so when I talk to my students about that, now that I teach the experience of Api's birth, in medicine, they say, 'Well, what could she have said differently? 'How about if she'd come to my bedside and said, "The results have come back, '"and Api has T21. '"How are you feeling about that, Anna?"' If she had simply asked me how I felt, I would have said, 'Well, I feel great. 'He's stunning and he's beautiful, and last night we had lots of cuddles, and he's just delicious, 'but I do have some questions about his health. 'What's that gonna look like?' Where's your hands gone? - Ah-doh. - (GIGGLES) I've learnt that there is a lot more advocacy required. And I've been really privileged to be part of a network that is looking at the guidelines for doctors when they're presented with whanau who may have a child with Down syndrome. And that's right from birth through to adulthood ` what are the things we need to think of and consider? Not just for the practitioner, but for the whanau involved as well. Barbies? Nice. - KYRA: Mummy, can I do the hose? (GASPS, LAUGHS) - Kyra is very active and very, very talkative. - Api, can I have the hose? That's not the baby hose! - She might get that from me. I'm not sure. - Yeah, I got you! - But she's very imaginative, likes to play, and very caring. A very caring person. (GENTLE MUSIC) - Having a little brother is good. Sometimes he go in my room and jump on the bed while Mum's not watching. - GEORGIA: Api is my little buddy. We go everywhere together. But sometimes he's very sassy to me. (LAUGHS) Towards me. - Yay! - Yay! 'Api's very determined when he plays.' Are you gonna go on that slide again? - Oh! - Oh. 'He brings so much matauranga, knowledge...' Hold that. '...learning, care... 'and for Api in particular, being our potiki, 'that means a lot as well to our whanau.' Oh, there! - Oh! - I imagine Api to be quite confident as he grows up but to be really independent. You like doing stuff like this. 'And he might not speak when he's older, or he might.' Oh, no! That's not how you do it. 'Aroha mutunga kore ` it never ends. 'My aroha will always be for` will be there with him.' - Api is very clever. He knows what he's doing. Knows what he wants. (CHUCKLES) He's` Api is very mischief. - (GROANS) - ANNA: So, his relationship with his dad is really tight, and I love that ` they have a very strong male bond. - (GIGGLES) - There's a traditional wrestling within the Tokelauan community that my husband likes playing with Api, and they wrestle a lot. - Argh! - Argh! - (GIGGLES) - So that's their dynamic ` the boyish, manly... 'We are the boys of the family.' - Ours is special, unique, our bond, me and Api. When he first started walking, he was just walking real slowly, unstable. (BLOWS RASPBERRY) - (GIGGLES) - Once he started getting more confident, he was walking a little bit faster, but still unstable. Now that he's getting older, when he walks around, he's really careful. It's cool, cos I'm thinking, 'Oh, yeah, 'now I can show him how to sprint and we're gonna have races,' sort of thing. (CHUCKLES) (SPEAKS IN SAMOAN) I really want him to grow up learning as many languages as he can. Wow! - Whoa! (VOCALISES HAPPILY) - That's a Api. That's a Api! A little monkey! - Anna's relationship with Api is very loving and cuddling and giggly. - Oh, tickle, tickle, tickle, tickle! - (GIGGLES) - Oh, tickle, tickle, tickle! - (GIGGLES) - And the way he looks at her when he's cuddling her, that's cool. - SOFTLY: This is the part where you make Anna cry. - Hm? (SOFT REGGAE MUSIC) - Oh, morena, sunshine! Morena, Api. He is a morning person, very much so. Have some breakfast? Yes? - (VOCALISES EXCITEDLY) - Yay! (GIGGLES) - GEORGIA: Api's quite an independent little lad in our whanau. I try to teach Api just little manners. (CHUCKLES) Things like that. - (VOCALISES PLAYFULLY) - (CHUCKLES) Thanks, son. Good work. - He might make a huge mess of his cereal or a huge mess of his juice, but at least he's getting that experience. He already thinks he's 21. Oh, most mornings are pretty chaotic, to be honest. - That's cos we sleep in. (CHUCKLES) - Yeah, that's cos sometimes we'll accidentally sleep through the alarm. - Let's see if we can see how handsome you are. (GASPS DRAMATICALLY) Wow! Api, you look beautiful. - When it comes to mornings and getting kids ready, we work together. - Ah, you got Kyra's one! - (CRIES) - I guess cos he's non-verbal and he's 4... - (FUSSES) - ...there's a lot of things we have to pick up from his behaviour, his cues... - (MOANS) - ...and his noises that we hear. - (MOANS) - Like, he's frustrated this morning. You can go little dog or a little cat. Righty-oh. Head down. STRAINED: Ooh, yep, yep. Autobots roll out. 'Kohanga is a beautiful, bright environment full of waiata.' Where's Aunty? 'At kohanga, we have his therapists come in and meet with him there 'to see what's going on in his daily routine.' And all the team there are constantly saying, 'What should we be doing with Api?' (CHILDREN CHATTER EXCITEDLY) - KAIAKO: Te tatau o te whare! - ALL: Te tatau o te whare! - It's hugely important that my children got that, because I wasn't raised in my language the same way. - # E pi pipi manu e, # e pi pipi manu e. # - And then Api came along. (JOYFUL MUSIC) And I think kohanga was a little bit apprehensive. So my question to them was, 'How did you change Kyra's bum? 'How did you feed her? How did you love her? 'Those are the things you're gonna do for Api too.' And you'll see they do more than that ` they love him to pieces. Api is immersed in the culture just by being in it. He loves waiata, he loves music, he loves rhythm. And he's very vocal with waiata that he knows. Api's development in the near future will be allowing him to do things in his own time. There's some pretty big decision-making as he goes into kura. Whether he goes to the full-immersion Maori schools ` the school that my daughters have gone to ` or whether he goes to an environment that has other people with T21. (CHILDREN CHATTER INDISTINCTLY) He's at an age ` he's 4 ` where typical children tend to go on to school, but Api doesn't have to, and legally he doesn't have to. So potentially he could stay on a little bit longer at kohanga or we could look at sending him to kura. And I really fought hard for my children to have kura kaupapa as their education. So I almost automatically think that Api should do the same as them. What I've realised is Api doesn't have to do the same as anyone; Api has to do what's right for him. He'll still have the reo even if he didn't go down that pathway. (ANNA AND GEORGIA CHUCKLE) (CURIOUS MUSIC) - Tonight on the menu, we have pork and mashed potato with shrimp sauce. - (INHALES SHARPLY) - Api's diet, um... (GIGGLES) - Well, his nickname is Bread Boy. - Cos he loves bread. - So that's a giveaway on what his diet consists of. - He'll sometimes just grab the bread by himself and feed himself some bread, but that's probably his favourite. - He's pretty chilled now. He normally comes home, watches a bit of TV while we do dinner. Routine helps, clearly, with all things. - Culturally, kai plays a huge part within our whanau. It's the thing that brings us together, I guess, every night. We get quite exhausted after big days, but I think having kai is a chance for us to catch our breath, recharge, get ready to sleep. - Api, holding hands. - (PRAYS IN SAMOAN) - ALL: Amene! - (SHOUTS EXCITEDLY) - Yes. 'So, Api's had a few choking episodes in the past 'that have got us on high alert now, 'and so we chop his food up nice and small. 'We make sure there's lots of fluids while he's chewing his dinner. 'We all chew really loudly ` you know, 'Yum, yum, yum.' 'You know, like, look a little bit crazy, but it actually helps us to think about him eating properly 'and making sure that he's swallowing properly.' - (GROANS) (WATER SPLASHES, GEORGIA AND ANNA EXCLAIM) - (FUSSES) - All right, Api, goodnight. - Night-night, George. - Blow me a kiss? - Po marie. - (FUSSES) - Oh, not tonight. - All right, go to sleep. - (CHUCKLES) - (FUSSES) - Go to sleep, buddy. - Mwah! Thank you. Night-night. CHUCKLES: No, no. No, you're not going. (LAUGHS) - (CRIES) - Good try, buddy. OK. - (CRIES) - Come on, then. (MUSIC SOFTENS) (KOAUAU WHISTLES SOFTLY) - Poi are a ball on the end of a string, according to the dictionary. You know, many things have been lost in our country, but poi didn't die. They brighten up people's lives. They give people a connection to culture. Api has to hold things, and at the moment he likes to hold two things, but he carries poi around a lot. - GEORGIA: Poi itself is taonga. You could say it's a toy; it's an instrument, cos it makes sound. For me, I use it as an extension of myself through my Maori culture. Potiki Poi is the largest poi manufacturing company in the world. So, I started Potiki Poi when I was 12 or` just after Api was born, and it has grown four years later into what it is now. It is a whanau pakihi, family business, but it has three main values ` tino rangatiratanga, diverse abilities and being as eco-friendly as we can. 'Potiki' means youngest child. Api is our youngest child, so we named our business Potiki Poi to embrace him and uplift him throughout our business. Overall, we set up Potiki Poi for Api and for his pathway ` when he grows up, he has a business, that he can pay himself a living wage and grow up, you know, having something for himself. But no doubt he'll wanna be, like, a builder or something else. (CHUCKLES) (LAUGHS) I don't know how many poi we're making today, but we are preparing for Te Matatini, which is the biggest cultural festival in the world for Ngai Maori and Kapa Haka, so I guess we're trying to make as many as we can to revitalise and share our taonga. Every whanau member has a part to play in Potiki Poi, as it is a whanau business. But I'm moreso the front person; I still make poi and do everything. And then we have Mum, who is really great at all of the admin and getting things ready. - Api! - Api's role in Potiki Poi is to get there, have a good play and lift up the room. He walks in with all of his might and just hugs everybody. That's something he likes to do, is give everybody a kiss and cuddle if he's in a good mood. - Da-da-da-da-da! - Nana is probably Api's bestest friend, to be honest. - Yay! - I think their bond is unmatched by anyone else. But she is the head of making poi when we're out of town or Mum's at mahi, I'm at school. - Mum's relationship with Api is quite close. Like, very close. I think out of all the grandkids, I think she's pretty tight with Api. - Mwah! - Mwah! - I think it's due to being there when he was a baby. Mum was the number-one carer for Api while we were working. - He's an intelligent boy. He's so smart. If he wants something, he knows that he's gonna get it from me. (CHUCKLES) Put it in the box. Yay! - Api's quite unique with his poi skills. He's created a lot of new moves, I reckon. (SOFT, PLAYFUL MUSIC) He's used poi to, you know, showcase what he can do and showcase who he is. I think there is benefits of people with Down syndrome using poi to have fun. That's the best part of it, is that Api can put on his music after school and just have fun with poi. And he creates different moves every single time he picks up a poi. That to me shows that he's learning and he's expanding. When he uses his poi, he is using his brain and he is trying to figure out how to do different moves. So that might be purerehua ` butterfly ` which is quite advanced, but for some reason, this kid has it in the bag some days. - ANNA: Yeah, he's next level. I think you'd call him a poi tohunga. It's like` He's just been around poi and knows that that's what you do with poi and watches everybody using poi. (GENTLE MUSIC) My job as an academic in the medical world has given me the confidence to demand what my child's rights are. (MELLOW MUSIC) - We really don't know where he'll be in the next four, 10, 20 years. I guess that's up to him and what he decides to do. He will always have Potiki Poi there to support him. I don't think I could ask for even better taonga to leave my brother as he grows older. - ANNA: We talk about Api being the CEO of Potiki Poi someday, and I don't think he'd want to be, frankly. I think he's gonna wanna create his own pathway and do what he feels. But I know that he'll always have a love for poi, and that's just because they're part of who he is. - The kids are all gonna be sports representatives. We're gonna live in a big mansion so Api can bring all his homies with the extra chromeys. - Oh, I'd love to adopt another one. - (CHUCKLES) - I want to grow old so I can see him get married one day. - Mm. - I want him to be fulfilled in life, however he wants to. - I think that it's made me realise how many people are afraid of what they don't know, and once they know, they get over it. - Proud of him. I'm very proud of him. I love him heaps. - Yeah. Everything he does is awesome. Proud of all of our kids. They're all awesome.