I know that when I am out in the public
and I see a child with Down syndrome or
some other disability I have a big smile
on my face and I think oh you're lucky
but I think other people wouldn't
think that way
but I had to go through this experience
to change that view point.
Like Mariska was tested during the pregnancy but
they didn't pick up on it so we didn't
know until she was born and she was
literally, it was a cesarian section,
she was literally held up, and I said to Mariska
know she's got a very special look about her,
I didn't even recognise it as Down syndrome.
Tipper truck.
Tipper truck, yeah good boy.
I was afraid about what it would mean to
have a child with Down syndrome, I felt
that I wasn't having my own child anymore.
Somehow I foolishly thought that he
wasn't going to be like me and like his father
and he was was less ours because of that.
Woah daddy!
Okay hold on hold on hold on.
It was all a bit of a whirlwind and happened
really suddenly and yeah we just kind of
had to roll with it eh?
Yeah it was a big shock,
went through all the emotions.
Yeah but, he came out and he was Lachie and you know.
Good boy, sit down on your bottom.
Can you find Mickey's face?
Lachie is four.
Right from the beginning
we had the same expectations around
Lachie and his life as we would for any other child.
The older he is getting the easier
it is parenting him and it's so exciting
to see him develop into this
confident little wee guy who has clear
likes and clear dislikes.
What's this one?
Bath.
This is the word.
Baaa... Bath
He has lots of words, he's stringing sentences together.
Car! Car.
He's using Sign, he's able to communicate his
needs and his wants.
Banana
And what's that one?
Cow!
A cow
Cow!
The word cow goes
Mooo!
As long as he's happy, healthy in progressing and whatever way
that's all that matters to us.
Hi daddy!
Hello Alexander, how are you?
I did make that!
You made that? What did you make?
Yes!
Rice! Rice?
That's fantastic!
Are we going to eat some rice?
I don't need to make any now.
Hey, how's it going?
Good!
How was your day? How was your day?
I went to go to a swimming lesson.
You had a swimming lesson?
Yes!
Did you do lots of floating?
Kicking
Kicking? Awesome
I think you only have to look at
Alexander when he's at his best and when
he's really happy and when he's giggling,
he just brings us so much joy and we
couldn't love him any more than than we do.
Ready? Steady? Woah that was a big one.
The highs are a lot higher because
any gains that Alexander has attained
have been hard ones.
I think if you have a
child with a disability you tend to
think the smallest milestones as quite a
big deal and so you still as a parent
feel the same way as those parents who
might have what we call a normal child
in fact I sometimes think that we have
far more empathy for him and his ability
to meet them means a big deal then maybe
our other children.
He's happiest when he's working and
doing something and he especially likes
being a big brother.
He sings them a goodnight song, he's taught him other
songs and we've told them how proud we
are of them that he's taught them these songs.
Kiss for Sienna?
Mwah!
Alright Yma, shall we get let's,
shall we make a sandwich?
You get a knife, big knife.
Well Yma is just a girl.
Very girly, very caring, loving.
Very happy.
Besides the girly side, when she needs to
she can be very firm and very strict
or even bossy.
Yeah not a pushover.
Her pace is a little bit slower
so you need to be patient.
The way she can enjoy little things, yeah reminds me
then to enjoy little things.
Yeah.
Why was that thing that I was working on so important,
when we can just be here and
have a good time with each other that's
that's the key thing and then the rest
is second priority.
(laughs)
Open.
So we've been going to the
Wellington Early Intervention Trust since he was
about nine, maybe nine months.
Hi!
It's just been amazing and it's also given us a whole
range of tools to be able to use at
home hasn't it?
Yeah what I've found really useful
the best way is to help him learn, and you know,
I'm learning to be a parent myself,
but then having to learn the best ways to help
him learn as well as been really good.
First we'll have our conversation then
we've got...
penguin
penguins perfect!
Which one?
Perfect choice, thank you.
So we have a boy eating a...
banana.
Who is sitting on the table? It was a little boy.
Perfect! High five.
Every dollar you put into early intervention you save four
dollars later on.
Getting in early for kids, certainly from a communication
perspective, if you can maximise
communication early you can minimise
frustration you can minimise behaviour
problems later
as a result of communication problems.
Blue... lips forward, blue
Bah
let's get them forward, mmm....
Beautiful work!
More?
More
Better lips forward please, more
More
Can I help, can I help let's go more
Ma
More
(Squeals)
Mmm lips forward, more. Where's your more?
More
Beautiful more.
Red.
Red ball.
We are also in the process of
preparing for school transitions so the
Wellington Early Intervention Trust
facilitates that transition.
Woah!
And it's really intense learning and they're pushed to
try new things and if they have
sensory issues or they have social
anxieties and so on you know there's a
whole range of things that they are negotiating.
With children with Down syndrome
they often have what we call low muscle tone,
they often have an association
muscle dyspraxia which is muscle
sequencing being able to get the muscles
into the right place.
I think it's essential that it's done at a very, very
early age because they can then just build
upon what they've learned as they move
further through life and they've got
muscle memory is developed at a much
earlier age.
(lady sings) Alexander can you sit down?
Alexander can you sit down, good job.
So the first thing that we're going to do today is
say hello.
(piano)
(singing) Hello to Alexander
When Alexander was five he was no longer
eligible to go to the early intervention trust
so that when it became really
important for us to make sure that he
had that continuity and still had access
to a music therapist to support his development.
Alexander is really motivated by singing, playing instruments
playing music based games but the goal
within that is communication and social skills.
So music therapy is using music
to develop non musical goals.
(singing) Go to sleep, are you sleeping dragon?
Yes I am!
(singing) Are you sleeping dragon?
I am.
Weee!
(singing) Are you sleeping dragon?
No I'm not!
Run run run run run!
He's fortunate to have a class of very kind children
that do try and involve him
obviously the more friends a child has
the more comfortable they can feel so
that is very difficult when you
see the the lovely bonds that children
have together playing together and
learning from each other and then when
you see how much harder it is for your
child to interact with others and to
approach others it makes me sad for him.
We would like him to be independent and be
happy and to - that's the most important thing -
and have something that makes his life fulfilling
and I think that's what everybody wants, it just
might not be exactly what other people
have but he'll probably
achieve that so I think it's important
to make note that he's not
going to be the president or prime minister
or whatever but he'll definitely
achieve things that he will be proud of.
(school bell rings)
Okay let's hang up our gear.
When we looked for her school and we found this great
teacher who was able to adjust, adapt
their program to make her fit in
that's real inclusiveness.
Yma is a very happy joyful person.
Fits in quite, you know, naturally into our whanau
and room 15, she's coming more and more
out of his shell, sharing her thoughts
and she's just just a pleasure,
she's a bit of a sparkle really into our classroom.
So we're gonna have a game of
bring me okay?
I know you've been working a lot with your
numbers and I'm going to see what you
can remember.
The core principle of Montessori
is follow the child, it assumes
that the children are inquisitive by nature.
You don't have to force them to
learn something you just need to guide
their path.
Yma what would you like what
quantity would you like to get?
Would you like to get a thousand cubes?
Could you please Yma bring me, how many, three
could you bring me three thousand - okay?
you're gonna bring me three thousand cubes.
There's lots of movement in there so they
have to hold the number and their head,
the quantity that they will have to go and get
that's why we purposefully do the
lesson quite far away from the materials
so they're walking backwards and
forwards with the material.
That age group need lots of repetition to build
the memory so we're always repeating
what did I ask you, what did you bring?
Oh here she comes, let's see what she brought us.
How much did I ask you to get Yma?
Three
Three thousand cubes, how many did you bring?
How many did you bring?
Shall we check?
Yeah
Let's count together.
One thousand, two thousand, three thousand.
You got three thousand!
Yeah!
What colour is four?
Blue.
Check again on your pyramid.
Gold.
She ends up teaching me I think,
a lot about life, she's very easygoing
interested in what we're doing all the time,
very social with the other children
and I think reading is going to be her passion.
I think it's important for any child
to be able to communicate, it's the
main thing with Yma being a struggle
because yeah she communicates but
other people just don't understand it.
She's getting as frustrated as well if
she can't get her point across
yeah, because she notices that
we don't understand her.
What's going on with your hat right now Yma?
Is your hat being naughty?
Yeah.
Without her communicating well it'd be even harder
to get, you know, friends or be able to
play with other kids and that's so
important for her she enjoys that.
Yma, your hat's down your face.
Down syndrome makes Yma way more different than she would be
but as well it does change her a lot
but it doesn't change her being Yma.
I get a real kind of hands-on experience
of what equity is. The education system is
built around tolerance and empathy
anyway so yes I think they are aware of
the Down syndrome but they know Yma as Yma.
She's not a girl with Down syndrome
she's Yma, she's a person and she's a very special person.,
but yeah she's got Down syndrome so that
means a couple of things but that's
really not so important, that's not what defines her.
Hey cheeky.
Mummy has to go to do a little bit of work.
Being a single mom
is a bit of a juggling act.
Combining the work responsibilities
with my responsibilities to Lachie
and around the home.
I'm only just going to do a little bit.
Come mama come mama.
I work from home and I structured
my working hours around Lachie's kindy hours
and I do a bit of work on the
weekends and so on just pretty much
whenever I can.
The fries are coming which -
(squealing)
Which fries look good? They're a bit hot.
Well he's quite rigid in has ideas about
how things should be done and by whom
they should be done and when they should be done.
And he likes his ya ya, his grandmother
to be sitting down at the table as well.
Come here, okay what's wrong?
Do you want ya ya to sit next to you?
Yes
But she's not feeding you.
Nooo
You're old enough to feed yourself.
We just learnt over the years that we
needed to try and give him some the stability
of a routine and we do things like
explain to him in detail what is going
to happen the night before something's
different in particular, making sure that
that has been explained
sometimes even hyped up so that he
perceives it as a positive thing.
She likes to be in her little world with
her dolls and having this,
those conversations with them.
And sometimes you do hear some words,
I mean she can talk but when she's in her
own world she just yeah she makes up
words but sometimes you pick up things
what she's talking about.
She sort of loses touch with her age group
they move on and they're not interested
in Yma anymore
and for Yma their games are probably
although she finds them very interesting
it's probably too complicated for her to
take part in.
And kids, you cannot blame them
they're not going to slow down
for Yma to keep up with her peer group
it's just it's just she losing loses touch
with them but then she tries to connect
with the younger children.
At school she knows a lot of people but there are a
few who come I have a little play with her.
Real friends I think is difficult.
Come on good boy, let's go get your bag to get ready
for when dadda comes.
In we go.
Noooo
Put these in your bag.
In.
That's it.
There's your dressing gown.
(cries)
Yeah that's probably not the best, he's tired and grumpy.
There's I think a misconception that a
lot of relationships break up if their
child has a disability and that
certainly wasn't the case with us.
So we co-parent I think we've worked
quite hard to make sure that we keep the
communication channels quite open,
like we text quite regularly and let
each other know what we're doing and
what's happening and we have you know
like a kind of a shared calendar so I'll
upload something into the calendar
and that Choppy will the
have access to
- and vice versa -
yeah yes so I think it's just about...
Sort of made that clear from the start
when you know we separated.
Lachie was the main you know our main focus and
number-one priority so yeah it's just
how it's always been.
Yeah it works.
From day one and how it's stayed.
Hey Lachie, daddy is going to be here soon.
You want to put your rain jacket on?
Look it's so rainy outside.
(knock) Who's that?
Dadda!
Hello!
Hello
How's he been?
Yeah good
I think as long as he's in a happy, loving home
he's happy and that's what he's got in two places now.
So yeah it seems to be working quite well.
Yeah.
You want to go home?
Are you going to daddy's place?
Sweet ready to go?
Good boy, give mummy a kiss.
Love you!
Bye bye!
Bye!
Cool see ya
See ya bye.
I am at a stage where I don't know if
I'd want to remove his Down syndrome if
I could because I think I'd be removing
some very important traits of his.
Gimme five, good boy well done.
Yeah I don't think you have to be a superhero to
raise a child with disability, you just have
to give them the time and the love and
they'll develop quite nicely.
Watching.
Looking up good boy okay now here it is.
I want lunch.
- I - I
- Want - Want
- Lunch - Lunch
Good boy, gimme five well done.
One of the main concerns is he's at a higher risk
of having a range of health problems and
because I naively thought that the heart
problem once that had been fixed
that we had had our big challenges and
then we had more and then more recently
Alexander's had some seizures, you just
sometimes wonder what's next.
Where's Lachie? Where's four?
Good boy!
It can be a lot of work but
for us this is what our lives have
always been so I wouldn't know any different.
Here we are Lachie it's green.
Thursday gonna put that one up.
Well done!
We have exactly the same aspirations and dreams
for him as what other
parents do for them for their children
that don't necessarily have a disability
and it's about having a good life it's
about having access to ordinary everyday
life experiences and pathways.
The children just love him and they interact with
him an equal, they don't treat him as any different
but they know he can do the activites
that they could do he might just observe
a wee bit, and they also know that they're role models for him.
Parents worry about their kids but
that's true for almost any child.
We all worry about our children,
with Alexander I think that I try to like
emphasise on what he's done and what
he's capable of doing more than 'what ifs'
because you just don't know what's going
to happen and you're not going to enjoy
your child if you're always worrying
about them so it's really important to
keep it in perspective and try not to
think of the potential problems I think
if you want to keep sane anyways.
It's challenging to make sure that
each child feels like they're getting
enough attention and enough love as the
twins have gotten older Alexander's bond
with them has strengthened, they found
things that they have in common and we
are very fortunate to have a lot of
support particularly from our family.
My mother stays the night two nights a week
and is here for three days of the week
and then my dad and step-mom come two days a week.
What color is the grass? Green ah
and the red truck and this is the wheel
and the wheel is in the muck.
My dad is incredibly helpful.
You get the reward by seeing a smile on my
daughter's face, somebody has to help her
Amalia, otherwise you eventually collapse.
We could worry about him less, but we
couldn't love him anymore and we
couldn't enjoy him anymore.
We truly feel blessed to have him in our lives.
But I understand why people might
be afraid to do so - to go through that
experience but for us it's been
incredibly rewarding and we feel really
strongly that we love him huge amounts
probably more than I ever thought I could so -
More than we should.
Yeah.
Yeah she's really nice, really loving.
Yeah.
She can get a little bossy at time
if we don't quite do things the
way she wants them.
She sometimes gets bossy.
Yeah.
I love her to bits.
I think this family would
be a lot different without her.
I love Yma a bit.
A bit?
Just this big.
Come on.
Okay
She's amazing.
One, two, three hug!
It's beautiful how they care for each other.
For him it's really a challenge dealing with with a
sister who can't communicate and not
communicate that well those are tough
calls for a little little boy.
If we would have known during the pregnancy
yeah in hindsight you wonder had we
known that she had Down syndrome
would that have explained, would that
have predicted the life we have now with Yma? No.
So you wonder why you actually need that
information, what does it tell you yeah
you're going to have a child with Down syndrome
but it doesn't tell you how
life will be and how that person looks,
because it's going to be a person, it's going to be
your your daughter or your son what kind
of person it will be.
Yay!
He's taught us so much about who we are
as people and basically he has given us
an insight that we might not have had if
he didn't have his condition. I think we
feel you know better people as a result.
Having a child changes your life,
but he's just changed a lot more than I could imagine.
Yeah just how much I love him.
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