* Captions by Antony Vlug. Captions were made with the
support of NZ On Air. www.able.co.nz
Copyright Able 2019 (SERENE MUSIC) (BIRDSONG) My morning routine —
I get the kids up and, um… go back upstairs 10 minutes later
and get the kids up cos no one
wants to get up in the morning. Want a bacon sandwich? Yes? Yes, that one.
OK. That’s exciting, eh?
Yeah! (LAUGHS) Then your holiday’s always exciting,
isn’t it? Nikki over here, I tend to have to keep on saying,
‘Right, you need to do this,
and then you need to this, ‘and then you need to do this.’ I’ve
kinda had to supervise their morning
routine a lot probably more than if you would for
any other 21-year and 22-year-old, because they kinda just get on
with their own thing. Morning, Em. Emma? Emma? (CHUCKLES) Did you say good morning to me?
Emma. Nikki. Hi, Nikki.
Hi. Morning, Emma. Morning. Morning. Thank you very much. There’s only 13 months between them.
It’s really well planned. (CHUCKLES) We had, um… So, we had four kids in six years, and three bakeries all
at the same time. During that period also,
we’d just bought our first house, which was a wreck, and renovated it
from top to bottom while living in
it, so that’s quite— that was a busy,
sort of, period. Right, girls, how are
we doing for time? Quarter to. We’ve got… 10 minutes… to get in the car, and you
and I can go off to work. No.
See, everybody’s helpful (!) Can you go hop in the car, please. (UPBEAT MUSIC) Locked it. Right, girls, we ready? Seatbelts on. Well then, OK, let’s go. The girls are actually really,
really different from each other, so Nikki’s very vocal
and talks all the time,
whereas Emma doesn’t talk very much. We’re just dealing with individuals,
and then the Down Syndrome part
sorta came as very, very secondary, so it was good to be able to put
that away really early in the piece. You ready to go and
see your friends?
No. (LAUGHS) You say that every day, and
then you love it when you go inside. Our commutes can take an hour each
way in Auckland’s wonderful traffic
(!) First we drop Nikki at school, and
then Emma and I head off to work. And foot outside. Nikki’s just turned 21, and she’s
in her final year at Sommerville
Special School, and they can only stay until they
turn 21, and after that, it’s off
to work — if they can find a job. See you later.
Close the door, please. Bye.
Good morning, Nikki.
No. How are we? Are we happy?
Happy now. Oh, you’re happy. Happy happy? Yes, that’s good. Emma and I, we spend our workdays
at Downlights Candles. It’s a business we started
just a few months ago. After Emma left school, I approached
so many employers to see if they’d
give her a job, and basically got nowhere. So I thought, ‘Well, I’ve been
self-employed most of my life, ‘so why don’t I just set up our own
business, and then she can work in
that?’ Good morning. Oh, thank you, Emma. Did you
bring me a coffee? Thank you. We’ve always had candles at home,
and Emma really likes them, so I
thought, ‘Let’s make candles. ‘That’ll be a piece of cake.’ Thanks for the coffee. What are you gonna do today?
I’m gonna do lots of work.
Are you gonna work? Yeah. (CHUCKLES)
(CHUCKLES) OK, right. Yeah.
What’s first? We made a few candles.
‘OK, it’s not a piece of cake.’ It’s apparently got hidden depths,
and it’s a lot more difficult than
you would think. I’ll do a few, and then you
can come and finish off.
Sure, sure. After only a week or so, I was
saying to these friends that, ‘Do you know what? I think I
need some advice about this,’
and my friend, ‘I’ve got a friend who’s got a
candle company. She lives just
down the road.’ I was a little concerned about the
steps he was taking with the
business, so I offered him the opportunity to
use the manufacturing facility out
of Illumina so that it would save him costs at
the beginning and to show him a few
tricks of the trade. I was born in Canada, and I’ve lived
in New Zealand for 22 years now. I fell in love with New Zealand,
and I just had to stay. I’ve always been involved in
something crafty, so making candles
just seemed like a fun thing to do. Tony had a very small range, a few
fragrances. He did this market, and that led to Seven Sharp doing
a story with Tim Wilson. You probably don’t know about candle
making is it happens at a pretty
high temperature. How warm is it? It’s a secret, Tim.
It’s secretly warm. After that, we sold a candle a
minute for two days, so we very
quickly developed a business name, a
tagline, ordered new glassware,
developed a logo, all within three or four days. The name Downlights, I definitely
wanted to have a connection between Down Syndrome and the
name of the company. You take the pegs off. And put them in the bucket.
You know how it goes. And I’ll do the wax, OK? Thank you. For Jennifer and Illumina to,
basically, hand over her
intellectual property so quickly to us, four of five
years’ worth of experience, and really, really hard work,
which he haven’t had to go through. You know, your intentions and goals
with Emma were just so genuine. And I just really wanted
you to succeed for Emma so that she would have something
in her life every day, and there was just
no way I could of… let you flop.
(BOTH CHUCKLE) When we first started, everything
had to be supervised, whereas now it’s just a case of
just point out that needs doing, and within 30 seconds, she’s up
and doing it and on her own. So once she’s learnt how to do the
jobs, then I just set the task,
walk away. She’s right into it.
It’s really good. She’s really risen to the challenge
of the fact of having to get up
every day and travel to work and spend the whole day at work.
She’s, you know, really putting
herself into it big time, yeah/ Can you take the pegs off, and then
I’m gonna get that wax that we just
poured. I’m gonna add the fragrance
and pour the candles, OK? OK, good. You do that. And I’ll get the wax. Since we started doing this, her
independence has really blossomed. It’s been fantastic, really,
to see the changes in her. She feels achievement from what
she’s doing. We’ll do jobs,
and she’ll be smiling at the end when we’ve finished it.
You know, she’s obviously very proud
of herself and what we’re doing. Her confidence is just
growing and growing. OK, do all the sticks and take them
off, and then we’re gonna pour the
candles. (OVERLAPPING CONVERSATION) And what’s that? I dunno.
You don’t know? I think is is trophy. A trophy. Well done, you. I said it. I said it. When they turn 21, that
is the biggest challenge, because businesses often don’t
take on people with disabilities. We have a lot of opportunities for
them to practice the skills that
they personally need for when they finish school.
They’re ready for their next step, and unfortunately in a lot of cases,
that next step doesn’t happen. And the parents that I talk to
really struggle because they
would like their child to continue going to work. We need to do some stretches.
Ready to do some stretches.
Come and stand over here. (UPBEAT MUSIC) Having a job, having a role, having
a purpose gives them a reason to get
up in the morning. They like to contribute to society. What Tony’s done is give Emma an
opportunity to create a life that
she wants. And I feel that will be the
same for Nikki as well. * Do you know where that was?
What country was that?
Spain. Wasn’t Spain. It was in France. France.
Yep. Do you remember going to Spain?
Yay. The food was fantastic. What’s the next picture?
Press. About four and a half years ago,
I sold the cafe that we had in
Maraetai, and we travelled. (LAUGHS) I’d been working seven days a week
for 25, 30 years, so we decided
that we would travel. (LAUGHS) And we went to Europe,
Spain and France. A lot of time in the UK. To England.
Do you like it there? No.
Here. I was really amazed, you know,
and that— Well, I don’t know why I should be
amazed because nothing they do
amazes me any more. They took to travelling like
a duck to water. Nanna’s house.
That’s Nanna’s house, that’s right.
That’s you, I know. You love pictures of yourself.
(LAUGHS) Who’s that girl? Who’s that girl?
(LAUGHS) That’s Emma. It’s Emma.
It’s Emma. You’re looking
gorgeous there, Em. There’s me and Harrison when
he was just a little boy.
He’s taller than me now. First in line, so, Harrison, who’s
our oldest. 17 months later,
Claudia came along, and then Emma was born undiagnosed,
but was diagnosed at birth with
Down Syndrome. Which at the time, was really
devastating. It wasn’t
something we’d considered. All those questions — why me?
What have I done to my family? All the destructive questions
that you do to yourself, like, ‘What if I just stayed with
two. I should have just stayed
with two,’ and then I had the weirdest dream,
and it was my grandmother saying, ‘It’s gonna be OK,’ and I woke up in
the morning feeling like a weight
had been lifted off my shoulders. It was quite bizarre. I could see black-and-white
television documentary pictures in
my head of institutionalised people, so devastating, really. It was like,
‘Oh my God. That’s what we’ve got
to look forward to.’ Carolyn was the receptionist at a
business where I went looking for
a job, and was very pleased to
meet the receptionist. Our decision about having another
child after Emma, I think a lot
of our friends kinda thought, ‘Whoa, really, you want
to have more kids?’ The initial thought was, ‘Oh yeah,
let’s have another baby, and that
will, sort of, ‘push Emma along from behind,
and once you’ve got three kids, ‘you’re lost anyway, so
might as well have four. ‘Might as well have 40; it doesn’t
make any difference, you know.’
You’re so immersed in family. Nikki was born 13 months after Emma,
and, lo and behold, and she was born
with Down Syndrome as well. We were even more shocked than
we were the first time around, and the first— the initial thought
was, like, ‘Oh, this is just
I’m ready. The way it’s actually turned out
is completely the opposite. If Nikki had been born as an average
person, she would have probably
overtaken Emma, and… Emma would have been left as the
one child, sort of, on her own,
in a way. They get on like a house on fire, so
it’s fantastic. They’re gonna have a
friend for life. I wouldn’t be without them,
wouldn’t change a thing. If I had my time over, if I had
a wish fairy come down and say,
‘I could change it all for you,’ I’d just say, ‘No, go away.’ I’m
really… They’re just amazing kids. Um, yeah, so Carolyn was diagnosed
with breast cancer in 2007. Basically, the option was a
mastectomy, and Carolyn said,
‘Right, book me in tomorrow. ‘We’re gonna do something
about this.’ She had six months of chemo.
It was pronounced fit and well,
that she’d beaten it. Unfortunately, cancer decided it was
gonna make a return visit to Carolyn
only a few years later. And so she was rediagnosed again
with an even more serious cancer
in 2010. And just… This time they told us it was
terminal. Can you cut there, please? After she passed away, I decided
that her positive attitude was
something which I had to… mimic to start off with, because,
as I say, I wasn’t a particularly
positive person at the time. And I figured that I… lived by the manta of
‘attitude positive’. Which is actually something—
I had it tattooed on my chest so that every morning when I woke
up, I could look at that and go,
‘That’s how you’re gonna be today.’ And you’ve only got to do it for a
day, and then the next day, you’ve
only got to do it for another day. And eventually you keep on trying to
live like that and try to live like
that, and eventually you do, and you
actually start… becoming that way. Yay.
Do you trust me?
I trust you, Nikki. I think the issues that, for me,
at that time were practical issues, in that I was still running a
business, which was a cafe at
the time. Seven days a week, starting
at 7am and finishing at 5pm, and how do you work 70 hours a week
and look after four kids at the same
time? So Claudia, my oldest daughter,
was due to go to university at
that particular point, and I suggested to her that maybe
she delays university for a year, and she helped me look
after Nikki and Emma. We walked about it and decided that
I would take Emma and Nikki on. Kind of, doing the school runs
in the morning, you know, waking up, getting them
ready, driving them to school, and if they needed afterschool
activities, I would be in charge
of that. For Emma and Nikki it was great,
because it gave them someone to
focus on who was, you know, consistent every day, dropping them
at school. They had a routine that
they could stick to. It was really good just to spend
a lot of time with my sisters. I got to spend a lot of time with my
dad, and I did have to grow up a
little bit. You know, I was 17, fresh out of
school, going from hanging with my
friends and doing school all day to being essentially a full-time,
not a parent, but a caregiver. So it did make me grow up a little
bit faster than maybe I needed to. If that wasn’t the situation, but I
think ultimately, I’ve turned out a
better person for it. During that period of time where
she gave me that grace period, I reorganised my business and
took on more staff and, sort of,
extracted myself from the business so I didn’t have to be there the
whole time, which meant that I
could then step in and actually take a more active role
in being with the girls and looking
after the girls. And it’s continued from
there in that way. * And an inch that way,
and an inch that way.
OK. We’re at Eastridge shopping centre
in Mission Bay. So, we’ve got a Facebook event
happening so that people know
we’re here. And often when we do these events,
we gets lots of people come to see
us, come to meet Emma. Thank you, darling. Thank you very much. That’s great. It’s just got better and better,
really, as to be so outgoing and
so confident in herself and running around and smiling
and enjoying herself. That’s for you.
That’s great. Would you like a receipt?
No, thank you. Thank you.
Thanks for your support. Thank you. She’s stepped up as far as meeting
strangers. To see her handle all
these different environments and different experiences,
and the shyness is going slowly. Well done. Well done. I think I’ve mentioned before, you
know, having two kids with Downs in
the same family. So, as you can see, they get on
like a house on fire. And this
is demonstrated constantly. That’s it. Thank you. I think people, um… respect the fact that we’re trying
to do something for ourselves instead of expecting other people to
help us, so, no, it’s always a great
response. (GENTLE GUITAR MUSIC) Instagram, so 1450 followers. Social media, it’s gone crazy.
It makes us feel what we’re doing
is something really worthwhile, because so many people are coming on
board and telling us that. – I think unfortunate in that…
– (CELL PHONE DINGS) That’s another— That’s another like.
(CHUCKLES) (GATE CLATTERS) Hello.
(LAUGHS) So, you’re wearing all your clothes?
I’ve got my clothes on. You’ve got all your clothes on.
You’ve got your suitcase packed.
Yes, suitcase. Where are you going? Where are you gonna go to?
I don’t know. Just somewhere. Do you want
to go travelling again? (SPEAKS INDISTINCTLY) (BOTH CHUCKLE) I ain’t going.
Do you wanna go make some toast?
I don’t want. You don’t want toast? What are you looking at?
I’m looking at you.
Well, go. Hey, excuse me. Excuse me, kiss me. Thank you. Love you too. The amount of exposure that
we’ve had has been phenomenal, and Disney Digital Network
contacted us and said, ‘Look, we want to do an article on
our digital network,’ and got a
fantastic response off that. And then there was another company
in the States who, obviously, had connections with Disney somehow
or other, and it’s a video
production company called Everhance, and they in turn came to us
and said, ‘We love what you’re doing, and
we’re really inspired by it, and we
want to make a promotional video.’ So Everhance came to us and said
that after they finished the video and said, ‘We’ve got a connection
with a very famous person, George
Takei, of Star Trek fame.’ Turns out that he’s got 10 million
followers, and the bigger it gets, the better it gets, because we will
then have to step up production, and then we can start
employing other people, so the whole idea, really, as we
go further is to create a factory
situation, get it much bigger so that we
can employ other people with
Down Syndrome. All our friends are here. Now you can give the
girls hugs again. Hello. You can say hi there.
Heya. So, we’re at the Franklin Tap House
in Beachlands, which is our local
pub. We only come in twice a week. And because now, of course, the
support and the following we get
with Downlights, now we’re getting people coming up
to us and chatting to us when we’re
in the pub as well, which is great. Really enjoy it.
There was a really big All Blacks
game on, and we came down for that. And we met a couple of bikers who
were so impressed with the way
that the girls were enjoying the whole thing,
and they about our story as well,
so they knew what we were doing. And they were like, ‘Oh, look,
we wanna buy the girls some
All Blacks T-shirts,’ and then about a week later, I got
a phone call from one of the guys. ‘Come and meet us in the pub this
afternoon. We’ve got those T-shirts
for the girls.’ So this is again the, you know,
outpouring of generosity, and the way that people have been,
the support, is brilliant. They’re just so full of love. Like,
they’re just there to have fun and, you know, make the most of
their time. They’re just so open
and friendly, and sometimes too friendly.
You know, when you go out, and
they just wanna talk to everyone. And I’m kinda more reserved,
so I like to stay back a bit, but they just— you know, they
love hugs; they love laughing. A couple of years ago,
I decided— Emma and Nikki’s
favourite band were in town, so we decided last-minute that
I would take them there. And we had a great time, but I
remember talking to this woman
that was next to me, and she could, obviously, recognise
Emma and Nikki both had
Down Syndrome, and so she started asking me
questions, and I told her that,
you know, they’re my sisters. And the amount of praise that I got
from her, I found really unusual,
cos she was saying, you know, ‘You’re an incredible sister. How
amazing that you’re doing this for
them.’ But in my mind, I was kinda taken
aback a little bit, cos obviously,
you know, they’re my sisters. And I don’t really think that
they’re that different from
other people, so it’s kinda the same as if they
didn’t have Down Syndrome and I
was taking my sisters out. Aw.
(LAUGHS) They shouldn’t have to stay home
just cos they have special needs. You know, they can go out and have
fun, and, like, I probably didn’t
even need to be there. They were fine on their own, dancing
and singing, having a great time. Kind of a reality check, I suppose,
that, you know, they are different.
But that’s just who they are. I hope that they can be
more independent. It’d be great for them to have
dreams and be able to follow
those dreams and actually have something that
they want to do, instead of us,
you know, going, ‘Cool, here’s an idea.
Let’s go through with that,’ and then they have a great time
anyway, but I’d love for them to think of stuff on their own to be
like, ‘This is what I wanna do.’ Have a seat. Have a seat here. Do you want to sit next to Nik, Em? (GRUNTS)
(LAUGHS) Phone in pocket. (SPEAKS INDISTINCTLY) Are you warm enough, Em? I hope that they can have a future
which is not dependant on me, and that’s really a big part of what
this is all about, of trying to get
them on that path. I suppose, practically speaking, I think they’re gonna need some sort
of help. They’re gonna need some
sort of supervision or just a nudge here and there, but
then they keep on surprising me as
well as to how bloody clever they are. Nikki, can you give
Emma your jacket? Nik? If things keep moving as fast as
they have in the last few months, then, yeah, I think maybe they
could be living on their own,
and just maybe someone could just come in and check on them
occasionally and make sure
everything’s OK. Whatever their independence level
is, I wanna get them up as far as
they possibly can up that ladder. (BOTH LAUGH) I don’t think I’ve
sacrificed anything. I think I’ve just done
what all parents do, and, I mean, OK, you can
call it sacrifice, but it’s not sacrifice. We choose.
How is that a sacrifice if you’ve
chosen to do what you wanna do? That’s not a sacrifice. (BOTH LAUGH) (GENTLE MUSIC) I’ve started thinking more about
the future, and what happens to
my youngest two kids as I get older and
as they get older. I thought I’d start to sit down and
write down some of my thoughts about
my family, the children, their lives and… maybe their hopes and dreams
and my hopes and dreams for them. I just wanna say that I’m
a very, very lucky man. I was blessed with the love and
the company of a wonderful woman and was lucky enough to
spend 25 years with her. I know our greatest achievements
was all of you. Every day, I’m
really proud to be your dad. Every day, I love you more. Every day, I worry for you, and I
know I shouldn’t. You’re all gonna
do great things. Every day, I feel lucky
to have you in my life. Captions by Antony Vlug. Captions were made with the
support of NZ On Air. www.able.co.nz
Copyright Able 2019 Attitude was made with funding
from New Zealand on Air. Every Kiwi has a story. Some will challenge you
more than others. A queen is in the house. (LAUGHS) So, you’re gonna have to
feel me a little bit later.
(LAUGHS) That was so bad. Jayden, you know it. Come on. BOTH: Whoo! Really appreciate it.
Thank you, bro. Yeah. Give me a hug, because I love you.
I love you. For more from the team at Attitude,