*
(CHEERFUL MUSIC)
Okey-dokey.
Ah!
Ready? We'll put that on here.
Testing. One, two, three.
Now what do I say?
He's a very loving little boy.
He's very charismatic.
He's very charming.
There you go. You got your
little mic on? Here we go.
Shall we slap it on the
back of your pants?
(SQUEALS)
OK.
OK, you ready?
Yeah.
Come, mate, where
you going? Come here.
I want to do over there.
No- (LAUGHS)
He wants to do it on the
steps for Dad, today.
Oh my God. He's so funny.
This is what I'm talking about.
He just does his own thing.
He's very funny, imaginative,
entertaining.
Definitely entertaining.
Yeah he's... I think he could
be a cult leader one day. (LAUGHS)
Dad, can you get my ice-block out?
OK. (LAUGHS)
OK, Oskar. Hi!
Hi.
How old are you?
5.
If they ask me about his condition
or something, I do say that he's
got dwarfism
and most people don't even realise
that there is that issue,...
I need to get on the chair.
...cos he's so young and, I think,
they're used to seeing adults as
dwarves.
Now I'm getting down... the chair.
A child is a real rarity.
And when do you use the stool?
Um, when I need to go toilet
and get up here and
look through the windows.
He got most of his smarts
from his mum, so that's OK.
He got his book smarts from his mum.
Street smarts from his dad.
Both of them work well together.
(LAUGHS)
He's never shy, and he gets out
there and he talks to people.
No, I've got it.
OK, you carry.
You know, which is good.
It helps other people engage
with him as well.
And it's one of those things
that he's gonna need.
He's literally running the show now.
Uh-huh!
He's also adventurous and, you know,
keen on getting out into the world.
Do I need real toothpaste on?
He is a strange
combination of factors. (LAUGHS)
Have you finished?
Yeah.
OK, thank you. That was good.
Now the toilet.
Oh, well, we don't need
to see the toilet.
(GENTLE GUITAR MUSIC)
Uh, well-
Do you wanna tell it?
No, you tell the story.
We actually met when...
well, when I was very young.
Thanks a lot (!)
And Dames was also quite young.
We always got along well.
Damon was in London for...
...13, 14 years.
And then, when he got
back, he got in touch.
From about mid-30s on I definitely
wanted some children before it was
too late.
So it was, you know, fortuitous
that we ran into each other
and we both had the same
inclination at the time.
When I got pregnant,
it was a nice surprise.
Mm. For both of us.
Yeah.
Because the indication for Miriam
was that probably wouldn't happen.
Yeah, yeah. That is what I thought -
it would be unlikely.
And she had a miscarriage,
unfortunately, which was very sad.
Yeah.
But then fell pregnant again.
Achondroplasia apparently doesn't
usually show up on scans until -
or, you know, indications of it -
until later on in the pregnancy,
because it is a growth issue.
My midwife had ordered an extra
scan, and that's when they picked
it up,
that his arm and leg bone
measurements were shorter...
Not growing in the same
rate as the rest of him.
...than they should be.
Yeah.
We didn't get the diagnosis-
it was a couple of weeks later,
I think,
by which point I was
about 35 weeks pregnant.
When they actually
said achondroplasia, my
mind was quite blank.
I found it difficult
to absorb anything.
Well, because we didn't
quite know what it meant.
Yeah.
Once I sort of got
over the initial shock,
and, you know, as a journalist
I research things anyway.
I find that a way
of relieving stress.
So I did make a concerted effort
to find out as much as I could.
My job was to make sure
that she felt comfortable.
Just to go forward and see
what happens, and not to panic
at this point.
And that seemed to work, you know.
Mm.
Well, Damon was quite pragmatic,
which, I think, is probably
the best way to approach...
...these situations. Yeah.
She was good, you know,
once we'd seen him.
I was gonna love him no matter what,
and so was Miriam.
It wasn't as bad or as
scary as we had been told.
So, it was just... We were just
stoked and excited and happy.
(TRANQUIL MUSIC)
Achondroplasia is the most
common form of dwarfism.
There's many, many different types.
Within achondroplasia itself,
there's a bit of a spectrum.
The defining characteristics
are a slightly bigger head
and shorter limbs in
proportion to the body.
There might be a perception that
the impact of it is mental maybe,
sometimes.
Which is not the case. There are
no intellectual issues at all.
There's perceptions that it's
far more limiting than it is.
You wanna try and put
your foot off the ground?
(SQUEALS, LAUGHS)
OK.
Let's try some kicking now, eh?
Ready?
I'll hold you, like that.
Uh-oh.
Ah!
Yeah? OK.
You wanna put the noodle
around you properly?
Because you've got it on one side.
Let me put the noodle on-
(SQUEALS)
It's all right. You're OK.
Look, there you go.
There can be lots of issues.
The ones that stood out
to me were, you know,
there's lung problems,
neck problems, heart problems.
Different sporadic growth
issues that can affect him.
He was a tiny little baby.
Tiny!
I had to hold him on an X-ray bench,
a cold metal bench,
and hold his hands out
and hold his feet out so they
could X-ray every part of him,
and just check that
there was nothing fusing
or there wasn't going to be any
issues that they might look at
later.
I mean, at the time we were told he
might not have the ability to move
his limbs, and stuff like that.
I know that they give you the
hardest line, but it was all
still pretty scary.
I've got a lot more
faith in the universe than that,
so I just trusted what would happen.
Strangely, because he was a happy,
healthy child, there was never
really- there wasn't any concerns.
We had to go through all the motions
of the tests and things like that,
which is understandable and good.
And it's a great thing that
we have here in New Zealand.
We can have, you know,
all that stuff for free.
And they're keeping an eye on him,
but he never, ever seemed to me
like there was a problem with him.
Do you wanna go for a walk
with Mum and we come too?
Yeah. Now?
(SQUEALS)
He always seemed like he was fine
and just another child of his age.
No, I didn't.
Yeah, obviously smaller.
But other than, that he was
just the same as any other kid
and he hit most of his
marks at the same time.
(CHEERFUL WHISTLING MUSIC)
Look how excited Omar is.
Some of them not so much, because
there are issues that come with the
limbs' length and stuff like that.
(SQUEALS EXCITEDLY)
We do find, sometimes, people
stare at him and things like that.
We try not to worry
about that too much.
I just hope he doesn't
get impacted by it.
Sometimes you need close-ups, Oskar.
(SQUEALS)
I mean, I spot it
because I'm looking for it,
obviously, because that's a father's
fears and things like that.
But I'm not, like, walking around
looking for trouble with people,
or anything like that.
I just want to make sure that he's
not ridiculed in any way.
Usually, he does touch it,
but nevertheless... (CHUCKLES)
And he hasn't had that yet.
Well, I want him to be an astronaut.
But I think he'll probably end up
being a unicorn.
That's his latest one.
Or a hairdresser. I don't know.
My hopes for him is that
he doesn't feel bullied,
and he has a good life.
If you couldn't reach this
what would you do?
Oh, just use a broom. Ahh!
As with Oskar, most people with
achondroplasia are born to people,
like Damon and I,
who are average sized height.
In our case, it's just
a random gene mutation.
But if Oskar has a child then,
obviously, the chance of them
having achondroplasia is higher.
Can someone pass me the broom?
(PLAYFUL MUSIC)
Oskar just turned 5 in December.
So he started school recently.
Eh?
Shall we move daddy's table, and you
maybe get some things out and show.
You want to do the dress-ups, Oskar?
Oh, yeah. Bye!
He has been
hitting his milestones well.
When the first diagnosis first
came in they said that he might not,
particularly with
physical milestones. But he has.
OK, what is this called?
(LAUGHS)
From a very early age, he
has been very keen to get out
and try everything he can
about the world and explore.
I wanna do it.
There we go. You wanna put it on me?
Or should I put it on?
Oh, thank you. Oh, look at that!
I think it fits.
I am glad we live in a cul-de-sac,
because I could see it ending a
bit... (CHUCKLES)
...more worryingly for me.
His dad had a tendency to escape and
go on little adventures when he was
young,
and Oskar definitely inherited that.
What have I found here?
What have you found?
Oh no! (LAUGHS) No.
Ah! Ah! Ah! Ah!
It takes weeks to get... (LAUGHS)
Give it to me.
Ta-da!
Hair chalk.
Who wants it?
But only if it's blonde hair.
Oh, all you guys have black hair.
Well, Damon is very much,... 'Throw
him out there and leave him to it,'
whereas I guess
I am more protective.
I do get concerned.
But, at the same time,
I'm sort of torn,
because I think that adventurous
spirit is good for Oskar.
And it will build resilience,
which he'll need.
And so far that's working -
you know, he throws himself
into things brilliantly.
Like his starting at school,
which I was terrified about and
nervous about, he flew through.
Since, you know, school and that
he does realise that he's half
the size of other children.
I think he's definitely
got some comprehension.
We've tried to discuss it with him,
but it's not something he alludes to
very often.
Even if there's
a book about Mummy...
I think that that's part of
the confidence-building thing
is that he thinks that there's
no difference, and that's what we
want.
Don't you need to
wash your hands, Oskar?
He wants to be
the same as everyone else.
So I think he's OK
in that department.
Did you hear us talking about you?
Speak of the devil!
(GRUNTS)
You're going for the iceblock,
aren't you?
All right.
Ow!
He's pretty good with finding
solutions to most problems.
Quite innovative in that respect.
Mainly it
would be about reaching things.
So, door handles, obviously,
can be a problem.
No!
Here you go.
Is there one?
It kind of hasn't been too bad,
because he's quite happy to get
people,
to ask people to do it for him.
What sort of things
do you bake with mum?
Ah... Cake.
Pavlova.
I haven't made a pavlova before.
Turns out it's harder than I
thought.
We had to go to the supermarket
to get a pavlova from there.
(LAUGHS) We did!
We had to buy one, didn't we?
Oh, Mum, the secrets are coming out.
(LAUGHS) I know.
Probably the biggest challenge would
be clothes and getting dressed,
which is more difficult for him,
pulling up things.
He likes baking, cos
he gets to mix things.
(GRIZZLES)
What does that mean?
Don't put those away.
Why?
Um...
Can I do the red spoon?
Yep, you can.
Mm.
'At the same time, he is quite
happy to do anything that will
make it easier, so...
'There's several things going on
there. He can do it, but he just
doesn't want to sometimes.'
Do you want to tip the
flour into here? Good boy.
'Which I suppose is a
typical 5-year-old thing.
'So he can take advantage,
in that respect, as well.'
This is flour.
Yes.
Oh!
It's a bit messy, isn't it?
Don't, no-
I put this in the flour.
You did.
Here you are. There you go.
Yeah. Now what do we do?
That's right.
Can I mix, too?
Yep, now you sift it.
I want to teach him to question
things and to be brave enough-
I love questions!
Yes, you do love questions.
That's true. (LAUGHS)
(SQUEALS)
And to be brave enough to think
independently and not listen to
other people
when they're trying to push him
in a direction that may not be
right for him.
Yep. Good.
That's good. Now we're
gonna put some on here-
No, no. Wait, wait, Oskar.
That's good!
Right to the edge. Yep that's good.
We don't want to rub it all off.
We want it to stay on.
I hope that we teach him the
confidence to do whatever he wants
to do as he goes on in life.
So far, that seems to be working.
The colander bowl is on my head!
Oh!
To be brave, to be resilient,
to be kind.
To be brave.
What does brave mean to you, Oskar?
If there's something scary...
No, no, don't take that off.
...you have to be brave, not scared.
Oskar?
Oh.
All right, then.
There we go.
A gummy bear.
(GENTLE MUSIC)
So, let's have a look.
Stand on those two points there.
I think that... Yeah, but
they're way too big for him.
He's not gonna be doing any
jumps or anything today.
We're just teaching him how to
stand up on a board, really.
Actually,
it's not too much bigger, is it?
It's just a bit high.
Oh, we totally parent differently.
You know, like, I am...
I'm a lot more... unforgiving
and pushy towards him.
Dungarees, first.
What's happened with your feet?
Why have you curled them up like
that?
Just making my life difficult.
My job is to make sure he's
levelled off a little bit,
because he can really take
the mickey if he wants to.
This is the first time taking him
anywhere near snow. Isn't it, son?
This is a new
experience for everybody involved.
Except for me. I've done it before.
But (LAUGHS)...
Is that working?
Is that getting in there all right?
Yes!
So that's on?
It's on.
OK, very good.
Wah!
Not easy, obviously. Cos he's half
the size of a child his age, anyway.
So, it's a little difficult
finding things that fit him.
And starting him off at this early
age. I mean, we could wait a few
more years.
But I think the sooner he learns and
we battle through these situations,
the better.
It's more obvious these days.
It's just his height.
Other than that, he's definitely
more confident than most of his
peers.
Okey-dokey.
(SCREAMS)
No screaming needed.
Whoa!
Hey, you want me to take your hand?
There it is. That's how you do it.
Wriggle yourself down.
Now steering with your back foot.
Wha-? Ah!
(LAUGHS)
That's it!
Now, do you like boards or do you
think you might like to try skiing?
Uh, boards...
Boards is what daddy does.
Yeah, boards.
He's actually doing quite well,
because the bindings are actually
not fitting the boots properly.
Not got a lot of control,
as anyone who snowboards knows -
unless you're bound into them
properly, your control goes
all over the place.
(SCREAMS EXCITEDLY)
Wa-hey.
That's OK. That's the other thing.
If you need to stop suddenly, you
can always just sit on your bum.
OK, OK.
All right.
Doing it OK just with balance,
I think.
Let's get you over here.
Can you get out of my way
so you don't get-?
OK, I'll get out of your way.
(SQUEALS)
Whoo-hoo!
Whee!
No, I didn't mean you to catch me.
Oh, really?
You were ready to just go, were you?
Yeah.
OK, off you go then.
I'm not going to catch you.
You can find out all by yourself.
I am surprised,
but that's my boy as well.
Lean forward, yep.
It's good to see him
take to it so quickly.
He definitely likes it.
That's a straight run with no falls.
Amazing.
What do you think, Oskar?
Do you think you did well?
Yeah.
Yeah, did you enjoy it?
Yes.
I think he did pretty well.
He's looking... He looks
like he had a lot of fun.
And he wanted to do more.
Didn't you?
Yeah.
Are you gonna go up the
mountain with daddy next?
Are we going snowboarding up
the top of a big mountain next?
Yeah?
No!
Totally surprised. I mean, yeah,
first time I snowboarded I didn't
do as well as he did.
I spent a lot of time punching
the mountain and cursing it,
but he just took to it like a duck
to water and enjoyed the hell out
of it.
He was having a great time,
weren't you, mate? Wriggles.
Dada!
(LAUGHS) Great film footage there...
Stop.
Very proud. Stoked. Stoked
that he's gonna be a boarder.
Now we've just gotta
teach his mum how to do it.
(JAUNTY MUSIC)
When we got him to the school,
he ran into the school.
He was the most unafraid child
I've ever seen of a school.
He ran straight in. He didn't want
to leave at the end of the day.
So, after that, after his first day,
my fears were allayed. I was happy.
He's a very social child.
He has always had a lot of
friends at preschool and school.
And he definitely, definitely is
motivated by making as many friends
as he can,
which is great, and they've
all been awesome, to date.
Hopefully that will
continue as well.
Girls particularly like him.
I think there is a perception
that he is like a bit of a doll,
in some senses,
because older girls have a tendency
to try and pick him up and carry him
round,
which, and that is something that -
reasonably - annoys him quite a lot.
(LAUGHS)
As he gets older, things
become more and more obvious
with his size difference
and things like that.
He can't keep up with the
other kids in certain sports
or playing jungle gym
and stuff like that.
But he doesn't shy
away from giving anything a go.
He's got a lot of bravery in him,
which is sometimes a bit of a
problem,
cos he will go jumping of
things he's obviously not built for.
Oh, very good.
All right, guys,
how was your holiday?
CHILDREN: Good!
OK, so, we're gonna
start with a game.
We're gonna play tag, OK?
So, my tag is gonna be the ones who
are gonna show me the best chicken
impression.
(CHILDREN IMITATE CHICKENS)
(LAUGHS)
So, these chickens are gonna run
around and you need to run around
as well.
They're gonna try to tag you.
I've seen him at preschool when
somebody's, sort of, like,
normal day-to-day play with
any other kids, you know,
sometimes you're gonna get a
kid who's a little more bully.
But I've seen Oskar stand up to kids
twice his size, and he's never been
afraid of anybody.
And he's pretty strong,
strangely enough.
Compressed little muscles,
or something. He's very tough.
(PLAYFUL MUSIC)
Tag!
As a parent, you're always
wondering, you know.
I think it's a lot better these
days than it was when I was a kid.
When I was a kid, if you looked
slightly different, you got
ridiculed, not matter what
and they didn't let up on you.
These days, I think
it's a lot better.
He seems to be socially accepted.
He's definitely got his own
group of following. (LAUGHS)
We're more worried about, as he
gets older, how he has to deal with
things without his parents there.
Yeah, people's perceptions.
That would be my biggest fear -
the way the broader public might
treat Oskar in the future.
Our goal is to ensure that
he maintains the strength
to deal with people looking at
him a bit differently sometimes.
But I do think that the world is
a better place than it was even
10 years ago.
There we go. A little bit better.
He does teach me. He teaches me how
to be a parent - how to parent well.
Because that's something
I'd never had to do before.
Did you cut yourself? Oh, you
just gave me an electric shock.
Did you feel that?
Yeah.
That was from bouncing on there.
Did you just cut that?
Yeah.
Oh, what'd you cut it on?
Oh!
He makes me want to
be a better parent.
He makes me want to
be a stronger man...
You keep giving me
electric shocks, mate.
...and to look after him
and protect him.
You all right?
Those are the things I get from him.
Because I've had to completely
change my thought process of who's
more important.
I'll let go of you and see if
you can do it by yourself, yeah?
OK.
And, you know, at the end of
the day, he's more important.
Now what are you gonna do?
I can't see it.
OK, let me hold you. There you go.
It's all about his confidence levels
and how he deals with other people,
and, you know, being able
to rise up to any situation.
To understand and appreciate
difference and diversity
and not... not have any
sort of preconceptions, himself.
Nearly there, and-
Oh, this will be an easier way.
You can do it.
Cos I think people
learn from him as well.
Yeah, I agree with that.
Everything she said.
Oskar is everything.
I mean, I'm not a particularly...
I'm not a religious person, but he
is a blessing. He's the best thing
that's ever happened to me.
Yes, he's the light of my life.
He is.
He really is. He's a little...
He's something that makes me want
to wake up in the mornings and
go to work,
so I can pay for his life.
(BOTH LAUGH)
There's no regrets at all.
He's a... No, I wouldn't
swap him for anything.
He's an absolute diamond.
He brings nothing but
joy and happiness to me.
Most of the time. (LAUGHS)
Sometimes- He's a kid,
so sometimes he's annoying.
But the rest of the time,
he brings joy to me.
And now you're making me feel
a little teary, so... (LAUGHS)
I am feeling a little teary.
I don't know why I'm feeling teary.
I'm very proud of him every day.
Even when you're
a cheeky monkey, eh?
Yeah.
Yeah.
I am. I think he takes on the
world with an admirable energy
and approach.
I don't think he's scared of much,
and that makes me very proud and
hopeful for him.
I think I learn from
his approach to life.
And I do think that he's taught
me how to be more sensitive and
compassionate,
but also to be more relaxed.
To be a bit more carefree
and excited about the world again.
Cos you lose that after a while.
He teaches you, oh, you know,
there's new and exciting things
out there.
And you see things through
his eyes a little bit.
Yeah, I think that's infectious.
Yeah, it is infectious.
And that's a wrap.
And that's a wrap.
OK, cut!
(LAUGHS) Brilliant.
I said cut! Didn't you hear me?
Captions by Ella Wheeler
Edited by James Brown.
www.able.co.nz
Captions were made with
the support of NZ On Air.
Copyright Able 2018
Attitude was made with funding
from New Zealand On Air.
Nominations are now open for
the 2018 Attitude Awards.
Held at Auckland's SkyCity, this
premiere event shines a spotlight
on the achievements of people
who live with disability.
Go to attitudeawards.org for
information about the categories
and how to nominate someone
you think deserves recognition.
