* (POIGNANT MUSIC) It wasn't until our 20-week scan
that we found out we were having
twins. It was just these two round globes. The sonographer said, 'His arms look a bit short.'
They looked at Maddie as well
and told us she was fine. Everything changed a lot
from that point. (WHIMSICAL MUSIC) Captions were made with
the support of NZ On Air. Copyright Able 2018 We're a family of seven. We have Hunter, who's 10; Rhys, who's 9; and the twins, Madeline and
Felix, are going to be 6 in May;... How'd you do when I got up? ...and then we have 2-year-old
Joss, who's only just turned 2. Morning's quite rushed. We've got a bit to fit in. I've gotta make Maddie's lunch.
(JOSS WHINES) OK, make your breakfast,
and then stay out of the
kitchen for a bit, please. (MADDIE SCREAMS)
No, no, I'm fine with you doing it.
(MADDIE SLAPS) Oh, hey! No. Hey, no hitting.
(WHINES)
Maddie, no hitting. No hitting.
(CRIES)
No hitting. Madeline has septo-optic dysplasia,
which is a defect in
development of her brain. (CRIES)
There you go. Now you're in a swing.
(CRIES) So, her pituitary didn't develop,
and her optic nerves are
underdeveloped. Here we go.
(CRIES)
Going down, down, down, down. She also has a brain injury, which has significantly
impaired her development. She's non-verbal.
She's a wheelchair user. She has quite fragile health. There.
(WHINES)
It's right there. (WHINES)
...two, three, up towards Mum.
Up, up. Good girl. Good, good girl.
(WHINES)
Good girl. (SCREAMS)
Hey. Hey. Please don't hit me. (CRIES)
Good girl. Hey, you're OK. (MOANS)
Take your jumper too. Felix was born with
what's called phocomelia, which is interrupted development
of the long bones in his arms. How'd you do when I got up? He has two fingers on his left side, at shoulder level, and three
fingers on his right side. Mwah. Good morning. Felix has quite a
severe spinal scoliosis that's progressing quite
rapidly as he grows. That's going to require
surgical intervention to slow the progression
and stabilise the curve until he can have a spinal
fusion surgery to correct it. (FELIX WHINES)
It's here. He has a few developmental delays. He is nonverbal autistic. You're such a big boy now. Our day would typically start somewhere between
5 o'clock in the morning to 7 o'clock in the morning. We have our disability
support worker come in, and she'll help us with
the morning routine, which is getting ready
for school stuff, except that we have to do a
bit more of it than we would
with our other children. Cool. Happy? I have to give them their
medications; I make their lunches; I make sure that I write down how
their night's gone in the
communication book. Hey, you're happy-happy. Yeah? Pretty good night's sleep
last night, eh, Maddie? That's why you're in a good
mood this morning. Yeah? Taxi's here. Come on, Felix! We're gonna
go hop in the taxi, mate. See— Rhys, do you wanna help me
take these bags out, please, honey?
(MADDIE GARGLES HAPPILY) It's really normal
now — the extra stuff, like assisting them with eating,
and bathing them, and continence —
pants changes — and dealing with messed clothing,
and dealing with messed beds. Beep, beep!
Good work. Thank you, Rhys. You're such a big help.
(WHEELCHAIR CLATTERS) We'll see you later, Maddie.
You have a good day. (CHILLED-OUT MUSIC) (CHILDREN CHATTER) Hey, Felix, you ready? Push! When it came time to look
at schooling options, we went along to
Greerton Village School, and was really surprised by how well they were managing kids
with complex medical needs. Good balancing. Good boy. They had set up safety
procedures like having call bells throughout the school so that if a
child had a seizure or something, they would be able to ring
and get help really quickly. They were quite quick to say, 'Look,
you know, we are willing to take on
a challenge, 'and we are willing to do everything
we can to accommodate her.' I just felt so happy and relieved, and it just felt right. Like, that's ultimately it. My
instincts said, 'This is a place
where she'll be happy.' Maddie is learning to use
her yes-and-no switch. So, it's got 'yes' on one
side, 'no' on the other. Maddie, you're gonna use
your switch. It's here. (WHINES)
There you go. Do you want the tambourine? (MOANS) (SWITCH CRACKLES)
SWITCH: No.
Do you want the fan? SWITCH: No.
Oh! Does Maddie want something else? You want something else?
SWITCH: Yes.
OK. We'll have something else. She's doing really well. She's come
out of her shell. She's bright and
bubbly and happy. She loves the other kids, and they're quite happy
to sit and hold her hand. (GENTLE MUSIC) You're gonna listen? She is staying awake for
longer during the day. In fact, now she's actually staying
awake, most days, all day, which is
really cool. (CHILDREN CHATTER) (FELIX MOANS) Careful. OK. Beautiful, Felix. (WHINES)
Oh, here. Here we go. Wanna hold it?
(WHINES) Listen, Felix, it's work time.
You have to do some work. Cheryl is Felix's teacher aide. Her adores her, and she's been
really good with him, and really
intuitive and respectful, and she just kind of gets
who he is and how he ticks. Good boy. Good boy.
(GROWLS) Ready? One,... Whoo-hoo, there you go! Since he's started, he's just
blossomed. He's really happy there. He's really popular with the other
kids. He comes home in a great mood, and it's a stark contrast
to the little boy who seemed to be very suddenly cast
inwards and disengaged and unhappy. He's now trying to join in with
playing with toys with them,
or at least playing alongside. (CHILD LAUGHS) (JOSS WHINES) Oh, hold on! Joss, no. (WHINES)
It's OK.
(WHIMPERS) Often I'll have appointments
with various doctors, therapists, dieticians, um... Sometimes there'll be meetings with
case managers, and assessments
and... meetings at school. Often lots of paperwork
and lots of phone calls. (LAUGHS) My phone goes
pretty much constantly. Up you go. Whoops! Smooth operator. I try and squeeze in a bit of time to do,
you know, housework,... Come on. Let's go do
Hunter's bed, eh? ...grocery shopping, and, you know,
all the typical mum stuff that needs
to happen. Come on, then.
Yeah!
You're a very good helper. You gonna come in?
Bo, bo, bo, bo. SINGSONG VOICE: 'Bo, bo, bo, bo.'
Come on. You come and help. Hey? Here, look. You can
take all the pillows?
Yup. That's me.
Come here. LAUGHS: No, no. I need you to
move so I can put the pillow on. (LAUGHS) (WATER RUNS) Come in. James is the kind of person who just
wanted to be a dad. I think it is
natural to him. He is a really fun, cuddly, silly, nurturing kind of parent. With the older two boys, he was the one who had to take over
kind of parenting them while I was
in hospital. TEARFULLY: The way that we talk
about motherhood and about parenting and about parenting children with
additional needs is there's a lot of
talking about, you know, how they're 'treasures'
and how they're 'special' and how... Lots of other people
would say things like, um, you know, 'God never gives
us more than we can handle,' or, 'Special children
choose special parents,' or, 'You must be amazing; I couldn't
deal with that.' And I would feel
like this big fraud, because inside, I didn't— I— I didn't want to be there
half the time. (SNIFFS) So the only person I could— I felt
like I could talk to about it,
or— or... express it to was James. And so he got landed with all of that emotional load. She did her best.
Yeah, she really did her best. But... those sort of effects it
would have on a mother is...
The guilt alone,... cos she blamed herself for the
twins for such— the longest time. I was deep in denial, so I think it took him
stepping up and saying, like, 'We can't be this family; 'I can't care for these
kids and care for you,' for me to have that breakdown
and go, 'Actually, I need help.' It was a big turning point for me,
because I... I was kind of pushed
to... to build a social circle
outside James. (SERENE MUSIC) Hi, everybody. How's it going? The next-door neighbours screamed... Parent to Parent is an organisation
that supports families with children
with disabilities. I was invited along to join this art
class. It's made up of mothers
who've all got children with some kind of disability. We've, um, finally
found a respite carer.
Oh, good! And that's going amazingly. Cos it's
been, like, my biggest thing for the
last... forever.
So difficult. Looking at the housing
market, cos I'm kind of— I don't wanna be renting
and waiting for these people to decide, you know, 'Oh, the house
is sold, and you need to move out.'
So started looking around, but... accessible housing just does not
exist, and what you can temporarily
modify is really quite limited, so...
WOMEN: Mm. I'm just gonna be glad that we
know we'll be able to take care of Madeline and Felix for life.
WOMEN: Yeah. (WOMEN CHATTER) I needed to start building
support networks and trusting people and... not feeling ashamed and not feeling
like I had to keep that part of
myself secret. Kind of accepting myself a bit more. Like, when I actually started
feeling like I was safe to express those feelings
of— of like, 'You know what, 'some days, I hate this, and some
days, I don't feel like I'm
adequate,' I started hearing other mums say it
too. And I didn't feel like I was
alone, and... (INHALES) it was really validating. I remember I came in here — were you
here? — and I was just a blubbing
mess, and Karen had to help
me pull myself together.
Oh, yes. Yes. (LAUGHTER)
And she was— she was
not gentle about it, but, God, I needed that. You can't parent from an empty cup. If you try to, you'll just burn
yourself out and dig yourself into a
hole. (WHIMSICAL MUSIC) Oh, hi, Felix! Are you
a bit tired today? Hi, Maddie. How was your day? How was your day, honey? Shall we take your rain jacket off? There.
JOSS: Mum?
Wanna take your shoes off? Hey, shall we take your shoe off? (JOSS BABBLES)
Want your shoe off, Maddie?
(JOSS BLOWS A RASPBERRY) There you go. Want me to take off your other shoe?
HUNTER: We're leaving early, Mum.
OK. Have fun, boys. We will. Thanks, Mum. How was your day? Hi. Can I have a kiss? Can I have a kiss?
Can I have a kiss? Mmmwah! You gonna kiss back, or no? Hey?
Oh! Oh, hi. Ah!
You've got hair all over your
face. Stay still. Stay still. There ya go. I know. I know. (WHINES)
You're OK! You're OK. Joss,
please stop pulling out the wipes. (WHINES)
Oh, I'm sorry. Hey. You're fine. (MUMBLES)
Can I hold your hand?
(MOANS) Is that OK with you? You're all grubby.
What have you been up to? Rub your feet? Yeah? (MOANS) (MOANS) What are you doing?
(JOSS BABBLES)
(FELIX MOANS) (MOANS)
So, I'm just going to pop
Maddie to bed for a bit, cos she just needs some chill-out
time before she's ready to hang out. She's a bit— bit tired, eh?
How about you, are you OK? You're OK? Hi. You gonna
be good for a minute? Uh.
OK. Well, you keep playing. Good boy. (MADDIE GIGGLES)
No...
(MADDIE GIGGLES) No...
(MADDIE GIGGLES) (DRUM RATTLES) Here it comes. It's gonna get you. It's gonna get you! (GASPS) Tickle-tickle-tickle... Maddie's turn? Madeline, hello... (TAPS DRUM) Oh...
Do you wanna go have a rest now? Yeah? You say bye?
Oh, you want a kiss? Do you want a kiss? Mmwah! Good girl. Mwah! Come on, then. You say, 'Bye-bye, everybody!' Come on, miss. OK, where is Felix? (JOSS BABBLES)
Oh, you're tired, eh?
Thank you for playing with me. Thank you. Hey? Hey, Felix. Do you want some kai? Yeah? Come on, then.
Up to the table. Oh, honey. Go sit down in your
room, and I'll come and have a
chat to you, OK? (FELIX MOANS)
Be with you in a minute. Hey? All right, you. Can you use your hand? Can you get them? No. Silly Mummy. There you go. He's trying to talk. Everybody
says he's, like, so close. He's got so much inside him he wants
to say, he just... can't find the
words yet. We have noticed that he
will follow instructions, and that often, he'll do things
after we've been talking without
really talking to him, um, that make us think actually,
he's much more aware than what
people assume, so... RHYS: In a minute.
(MADDIE GRUNTS HAPPILY) Hi, Maddie. I'm gonna
give you a kiss now. Mmmmwah. (GIGGLES) (LAUGHS) (BOTH LAUGH) So, this medication she has three times a day. It's a, um— a hormone replacement
for one that would normally be
produced in the pituitary gland that controls kidney function. So without it, her body retains all of the sodium and voids all of the free water, and she becomes severely dehydrated.
And then she will have... just a hydrocortisone tablet. Hey, Maddie. It's time for your
medicine, miss. Come on. Come on, honey. All right. Come on. Up. Just pop that one down. Here we go. Open up. In it goes. (GASPS) (BOYS LAUGH, SHOUT) Come on, then. Hey!
(JOSS BABBLES) (DOG BARKS)
HUNTER: Careful — dog! Rhys...
(JOSS WHINES) Lily! Hunter and Rhys were... 2 and 4
when the twins were born. And Mum just kind of disappeared,
and then... our lives became really,
really busy. RHYS: Come on...
(JOSS GIGGLES) (FELIX LAUGHS, JOSS BABBLES) I think because they were so young, it became normal to
them really quickly, and they actually
adjusted really well. RHYS: OK? Let's do it again! They've both got a really deep
sense of empathy and justice, and... are caring, and... just... Generally, I think what they've
gained from living in this family outweighs the stuff
that is difficult. (POIGNANT MUSIC) OK?
So, what do you need?
Just someone to talk to. OK.
How did your afternoon at school go? Oh, it was nice.
It was nice?
Everybody liked my haircut. Well, you keep up
being super awesome, and I will keep up spending
time one-on-one with you. Even if it's just us going
out for a coffee or... And a Milo?
And a hot chocolate. And a muffin. Hey, what have you got there? You've stolen someone's car keys.
Car.
Yeah, in the car. You go unlock the car. Hey, boo.
Hey. How was your day? Shit.
Shit? Shit. What are you doing?
Cooking a roast. I'm quite a different
person than I was... Yes and no. (SHUDDERS) ...three years
ago, four years ago now. Actually, it's probably more
like four years ago. So it's
been a while. From my way of coping with things,
I didn't know how to talk about
what had happened with the twins. I felt like...
I was this really horrible, awful failure of a mum,
because I didn't feel... loving. And I didn't have a bond.
Especially with Madeline. I felt
like I hadn't bonded with her. I was really anxious all the time. I
was terrified there would be another
diagnosis and that I would have to go through
those feelings of— of having lost my
child again. I... poke your nose! I... poke your nose!
(FELIX MOANS) James bonded with them in a
way that, I think, I really
struggled to. He just kind of accepted
it and got on with it. What are you doing, shorty? We learned to find time
whenever we could get it. And it's been really good to kind
of be like, 'Oh, that's right,' like, 'I really like this person,
and I really enjoy spending time
with him, 'and, actually, I need to put in
the hard work and take care of
this person, 'because, you know,
we're gonna be in this— in it
together for the long haul.' Um,... and, 'There's gonna be
the ups and downs with the twins, 'and it's going to be— you know,
it's a life-long commitment raising
these kids, so... 'we have to take time together to
take care of each other and take
care of our relationship.' We're learning how to have a
relationship now. It's taken that
long for us to get to this stage, is that we're actually trying
to work it out now. Um... Basically, five years sort
of just went, like... And that's gone. So we're only
just now learning how to have a
relationship. Before, it was more of a... We just did it. Just to—
We had to do it, so we just did it. We just worked as
a team. But now we can actually
start enjoying each other and... Scrub... Scrub, scrub. See? (GIGGLES) (WHIMSICAL MUSIC) Feel bubbles down the
side of your head. (FELIX GIGGLES)
Wanna kick? (SPLASHING)
Kick, kick. Carer arrives at around 5, and she'll assist with
feeding the twins. OK, Maddie? Having heaps of people
in and out of our home on a daily basis — it takes
quite a while to adjust to. Every single day — two, three,
four people in your life. Becomes really exposing,
and you become— you do end up feeling
really vulnerable. Mummy...
Good boy. There ya go. There.
Good girl, Maddie!
Hey, darling? Well done. It's good to see you're
awake, honey. How was school? How was school? I guess, over time, you
kind of start to redefine what you see as being, like,
a dignified, independent life. You start to realise that the values
that maybe, um, drive us all to be
really individual aren't actually what's
best for everybody. (JOSS BABBLES)
Watch with Joss.
Guys, go sit up at the table, please.
(JOSS BABBLES) (JOSS BABBLES) Hey, Joss.
Yeah. (SINGING ON TV) (MADDIE WHINES IN BACKGROUND)
Are you a dick?
(BOYS LAUGH) HUNTER: No.
Yes. (MADDIE WHINES)
FELIX: Hi.
Hey, that's mine! ...settle down soon. I don't like it
when she's like this. Yes.
So that counts as veges, I think.
You use your fork, please. That was a really good dinner.
Thank you, Mum. JAMES: Just put that down...
...but in Minecraft, you'd use,
like, old stone torches, and... (MADDIE CRIES, FELIX LAUGHS)
JOSS: One more... (MADDIE SCREAMS)
You're all right,
I'll get something— What's the matter,
Maddie Moo? Oh, yeah. (MADDIE SCREAMS)
OK— OK, I'll move the turtle. I'm sorry. I'm sorry. You're fine.
(CRIES) Motherhood's a really
complicated experience, I think. For any mother, it's
demanding and it's exhausting. You know, some days you
don't really feel like listening to what your kids have to
say about stuff, and you don't feel
like being touchy and cuddly, and you don't feel like
being patient, and... you don't feel like being a mum.
But you still are. And I think... that's the time when it's most
important to communicate with
your partner and get them to pick it up. # But may we always # be good friends. # My mother is waiting for me # underneath the kowhai tree. # Taniwha— # (MADDIE WHINES)
Oh, you don't want it to end? What about you, Jossie? Are you
ready to get your pyjamas on? I have really loved seeing what beautiful, caring, socially aware people I'm growing. Like, I feel
like I'm making an impact on the
world by teaching my children to be better
people. And I think that creates a
lot of hope for the future. Five second rule.
Yeah, true. Everybody's everywhere, so...
(LAUGHS) it's a bit hard to get
around and... do what— what we need to do when there's people everywhere. Sometimes it gets
stressful, because... you've been told to do something,
and then you get told to do another
thing, and then you get asked to do another thing. 'Mountainous jungle
thick with blumber. 'Gorillas love to sit and wonder.'
(FELIX WHINES) Our 2-year-old, Joss, is, you know,
a really full-on, gorgeous
toddler at the moment. So there's the usual kind of
chaos involved with that — making sure he's not climbing the
cupboards or pulling food out of the
fridge and tipping it out. I'm loving having a toddler. Mucking
around and being silly with him and singing and dancing
and rough-housing... Yeah, I love that stuff. '...a yellow robin might
soon flitter by...' Mwah. Goodnight. Go to sleep now? Goodnight, honey. Usually, Madeline wakes up
between 10 and midnight and stays awake for a while. So I
usually go to bed at about midnight.
(LAUGHS) Goodnight. Kiss for Dad.
(JOSS WHINES) Can you back me up, babe? Yeah, you can take the blankie,
but it's time for bed. Go give Hunter and Rhys
a kiss goodnight? Bang!
(JOSS BABBLES) All right, you. Is it my turn? My turn for a kiss? Mwah. If I could go back and talk to
myself before this journey began,
I would tell myself, 'It's OK... 'not to be able to meet
every single demand.' Like, 'It's— It's OK
to just be enough.' (PEACEFUL MUSIC) 'It's OK to feel like you're
failing. It's OK to feel like 'this is a really crap deal. It's OK
to say, like, "I can't do this," 'and then it's OK to say that
to other people and to get help.' Seeing the triumphs and the progress
and the little wins we have along
the way, it makes me feel like all the hard
work and all the fighting and
pushing are worth it. Who's up? (THEME MUSIC) Captions by Maeve Kelly.
Edited by Virginia Philp. www.able.co.nz Captions were made with
the support of NZ On Air. Copyright Able 2018 Attitude was made with
funding from NZ On Air.
