Practice English Speaking&Listening with: Parenting a Family with Autism Spectrum Disorder (My Perfect Family: The Priestleys)

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(WHIMSICAL MUSIC)

As a family trying to raise three autistic children

in a society that really struggles to understand what autism is, is really hard.

Most people wouldn't understand how much time and effort that goes into

creating a good life for these young people.

Come back.

Because we don't want our children living a life excluded from things.

The more people understand autism, the better our society is going to be.

Captions by James Brown

Captions were made with the support of NZ On Air.

www.able.co.nz Copyright Able 2020

Yay!

- We'll have hot sausages for you too. - Can I add some stock in?

- Look, he's not even interested. He's like, 'Nah, not eating that.'

I've got an amazing family and exceptional children.

They may technically sit on the autism spectrum, but to me, they've just got their own specialties.

They're all incredibly gifted.

- I eat anything.

- Sophieshe's really funny and really outgoing.

She's on the spectrum.

- So I did the whole sauce.

- Harryhis mind is constantly going.

He's on the spectrum.

- Oh, yeah, look at that.

Liam, he's my eldest son. He's very high-functioning autistic.

So he's very clever.

Connor's exceptionally fit and sporty. He loves to play soccer.

He's not on the spectrum.

- Spit it.

Look.

- Maybe you just need a bit of food.

- Racheal, she's my loving wife.

She's the rock that holds us all together.

She's always thinking about everyone else.

Without that, we wouldn't be able to have such a tight family.

- I guess it's just a busy six-person family.

And I'm acutely aware that we probably don't seem a typical autistic disabled family.

And actually, there's so much that goes on in families who are raising children who have autism

but don't meet those stereotypical labels who are getting on with life most of the time,

who just have a few barriers to overcome.

But as a family, we think about autism as a strength, and not to be embarrassed about.

- For me, autism is great, I think.

I get all of the benefits of it.

You know, I can learn really quick. I can take information really well.

But, um, I guess there are some downsides, too.

Like, um, I get the stereotypical can't read people.

The not looking into people's eyes, because it's weird-feeling.

And...

I think the missing some stuff kinda makes it a bit hard.

- I've got all these children, and not one of them is helping doing any cleaning.

- Something went wrong somewhere. - Pardon me?

- Why aren't the children doing the cleaning?

- Go and get them, then. - Oh, just... you pick your battles.

- Yeah. - (LAUGHS)

Liam is my first baby.

And you don't know anything other than what you get given, I guess.

And I just thought that children at 2 and 3 could draw schematics.

And he could talk in these really complex sentences and had these really adult type thoughts.

AIDAN: So we had him tested to find out what his intelligence was.

And I think it was at that point they mentioned, oh, he might be on the spectrum,

because of the way he responds to questions about emotions and things slightly different.

- The hardest part about autism, for me, I don't understand people and their feelings.

So often I'll do something and then someone will say to me, 'Why didn't you think about that?'

Like, well, I can't, really.

- Yeah. Hurting people's feelings.

- Are you sad?

- Boo-hoo-hoo (!) - I'm very sad.

- He's still learning the rules of social engagement and that social awkwardness.

What do you say when somebody says that, or how do you respond to a situation?

- Is it true? So you lied. - It is pretty true. - (GASPS)

- He's a pretty good older brother, yeah. - Oh! Aw!

- How does that make you feel?

That I've been lied to, betrayed.

- Liam and Connor have always been a tight wee unit.

Connor is just your average Kiwi boy.

And he's so empathetic, and so not on the spectrum.

- This is my trinket box.

It's full of everything in the world.

See?

- Harry is diagnosed with autism and ADHD.

I probably use the expression to describe Harry as the most impacted by his autism.

- Cassowary feather,

from Papua New Guinea.

Autism is like I have superpowers, but not superpowers.

I've got really good smell and hearing.

And it's sometimes really annoying, because then I can smell the ants.

And... I can't hear my own voice, so I can't hear how loud I am or quiet I am.

And it's really annoying for... the family.

- I just do squiggles and then draw flowers on them.

I'm bad at unicorns.

- When Sophie was... 3 or 4, she was doing some really typical autistic things,

lining up animals in a really regimented way.

She will mask a lot of the stuff that's going on for her.

She gets really confused about what's happening in social situations.

And then when she'll get home, it's like a bottle of lemonade being shaken up,

and when you open it, it all just explodes.

AIDAN: I noticed at school that she would react to situations that were difficult.

She got deeply affected by things that shouldn't really have been so important

She would sort of fly off the handle a lot easier than other kids.

- Autism makes me feel different and special.

The worst part about autism is...

that it's hard to get along.

with people.

- As the kids were getting diagnosed, the more we found out about it,

the more I started to realise that that was me when I was a child.

They didn't really understand autism very well 30 years ago.

I was just kind of a naughty, smart kid.

I haven't really been formally diagnosed.

So I was kind of in trouble a lot, and I started to realise,

yeah, no, I'm not really very empathetic, and I can be very blunt.

And even now, it's still the same for me. I still find I struggle with it sometimes.

I can explain all my bad behaviour, but... or all of my behaviour.

But I don't really care.

(LAUGHS)

- Where's your Adidas ones? - I don't know. I can't find them. Can you help me out?

OK.

I'm a planner and an organiser, and I run this house like a bit of a military operation,

which is a bit of a joke, but it's what it needs to happen for it to run really smoothly.

No, those are just jackets, I think, darling.

- So where is it? - I don't know.

- I usually get up, get things started. Harry's next up.

And we just do it piece by piece by piece.

- Maybe they're in my school drawer, school pants drawer. - You have a look in there.

Usually it's pretty calm.

And I try and keep it really relaxed, because I feel like my job in the morning

is to get the children to school in their best possible mindset.

We have a pretty cool system.

- Me and Connor are sleeping. You guys do all the work.

We get up, eat some food, annoy everybody, go back to bed.

Then you guys complain that we're not being useful enough.

Then these guys go to school, me and Connor finally get up.

Then we get our stuff ready and then we go to school.

I probably do a lot more in the mornings for the children.

But there's about that much that they can do in a day,

and you want that much to be stuff that's going to be in their learning environment.

- Where's your school bag? - (GASPS) I said I don't know!

- Harry and Sophie struggle to go to school most weeks.

So most people wouldn't understand how much time and effort that goes into our day.

Oh, the doors are frozen shut.

So we probably don't appear to be anything different to most families, which is a great thing.

But at the same time, people aren't as compassionate or as understanding when things do go wrong.

So we probably appear as this big family with these really naughty children a lot of the time,

or a family who are making excuses for the child's behaviour.

All right, love. Come on.

Come on.

Good girl. You're all right.

Climb out. Everyone's gone.

Ready? You look beautiful. Here you go.

Soph, I've got to go to work. Come on.

OK, come out.

Sophie Rose.

No, now. I need to go to work. Come on.

- Soph, out. - No!

You can't sit in the car all day. You gotta take them to the office now, OK? that's your job.

- There you go. You gonna take Hunter to the office? - No.

Bye!

Come back.

(GENTLE PIANO MUSIC)

All right? (KISSES) Have a good day, eh?

- I do not like school, because... socialising at school is hard,

because...

everyone there thinks I'm different, so they don't want to play with me, really.

- Sophie has a lot of rules to how life should be,

and that is a struggle sometimes, because she has lots of rules around friendships,

and her friends have to follow her rules.

And little girls don't want to follow another little girl's rules all the time.

And also, the ability to gauge a situation or know what to say isn't something that comes naturally.

Some of these skills have to be learnt.

So if you can imagine if you're having a conversation with somebody,

and I know how to instantly react if you start to get sad.

But for Liam, Harry and Sophie, it doesn't come naturally.

They're really thinking about, 'Now, how should I respond?'

So that's what Dawn teaches them.

- I'd be a bit afraid.

I'm a behavioural consultant, and I work with children with learning needs,

but I specialise with children with autism.

Sophie is more high anxiety.

A lot of girls present quite differently to boys,

and they mask their autism really well, because they mimic other children.

They will stand on the periphery.

They will watch what the other children are doing, and then they will copy what they're doing.

Last year she really struggled, so I worked with her to find out exactly what was wrong.

And one of the big things was she couldn't decide on who to choose to play with.

She found playing with too many girls at once was overwhelming.

The noise was too much, the choices of games was too much.

Following the rules was too much.

So what we did, we spoke to the girls and asked them

if they would be happy for us to put in a play chart of who she would play with each day.

And that really helped with Sophie, and her friends were really understanding.

And now we don't have to do that. She can just go out and play, and she can cope with it by herself.

- We can just, um, go around. - Yeah, walk.

(GIRLS LAUGH)

- Do you remember the last thing to do? What do you need to do once he's finished?

- Ms Ormsby says I had to finish my art, because everyone else is finished with their art.

- Harry is a really clever and bright child.

He's very passionate about animals and nature.

He does have troubles in the classroom with particular things such as noise, surprises.

If he's not sure what's happening, then it can overwhelm him.

But he's got strategies that we work on to help him adapt to those things.

- (GRUNTS)

This is my calm down box.

And this is my massage ball.

- What does that make you feel?

- Just nice.

- He likes using his hands.

If he's feeling overwhelmed or tired,

him being able to go to that box really helps him just to, kind of, get into a good space.

- We had one incident last year where Harry was really upset.

He couldn't go into class in the mornings and we couldn't work out what it was.

And it turned out that Harry has got high sensory needs,

and his sense of smell is really, really large, and he can smell ants.

And there were ants in the classroom.

So we had to get rid of these ants before we could get him back in the classroom.

- Perfect. - High five!

- Harry goes to a mainstream school, and I am adamant that he has the opportunity to mix with his peers.

And that's good for other children to learn what autism is, and how do you support somebody with autism?

Because the more people understand him and other people like him, the better our society is going to be.

- One, two, three.

- In about 20 minutes.

- We're going in here. - Who's that? - No one. It's Racheal

- Hohepa is a residential provider.

We provide a range of living solutions for adults with disabilities.

So my role is to meet new families that have expressed an interest

in getting Hohepa to support them doing something different.

And how do you make that all work in this incredibly confusing system

of funding and housing and rules and regulations, and how to pull that all together,

cos it needs a person to make that all kinda happen.

- You have to look at that.

About seven years ago, when Harry was diagnosed with autism,

I was just getting turned away all the time, every time I tried to advocate

for what they needed, or what I thought they needed.

So I thought, 'Right, I just need a bigger piece of paper than a mum.'

And I'd always kinda had an interest in social work.

So I did my social work qualification through Massey, by distance.

AIDAN: I'm extremely proud that she's managed doing a degree and raising these children,

and then raising me as well.

(LAUGHS)

And she's working in a similar sort of area.

I think she finds it really rewarding and fulfilling.

She's doing a great job.

So, this is LJ assembly. This is where we assemble the large jets.

So I design the control systems which actuate it and make it move.

And then this is controlled by the controls on the bridge, which the operator drives the boat with.

I've always worked with boats. for 20 years.

I've worked in defence, on the Anzac frigates

and the Protector-class ships, designing electrical systems for those.

Being on the spectrum, I've got quite a good ability to visualise things in my head,

so I can generally see the problems before they occur.

RACHEAL: With Aidan's job, he has to travel a lot.

So I parent alone for about 10 weeks of the year.

So as a family, we're learning really quickly, it's about the right people that surround us.

- Hey-ho.

- I just saw the biggest bumblebee. - A bumblebee? Here, boy.

- For our family, having a break is really tricky,

because there's not many people that can manage the complexity of three children with autism.

And then you're adding change, and then you putting in somebody that they might not know or trust.

It's often a recipe for failure.

Until we meet Big Liam.

And Big Liam showed that if you have the right carer in place, you can actually have breaks.

And last year, Aidan and I had our first night away as a couple, after 14 years or something crazy.

- I'm gonna push you real high, though.

- Ahh! - (CHUCKLES)

Hold it, hold it. Someone's gonna get hurt.

Being a carer, especially with kids of a young age,

I feel like you've really gotta just be yourself.

Because they can see right through you, you know?

- Mom doesn't like Dad putting up posters. Our dad.

He had this cool Spider-Man poster. Imagine if Sam was like that. You would die.

- I'd... - You live on your posters.

- Harry, he's just a wild boy. He will just go and go and go.

I try and take him for a walk or go for a swing or swim or anything like that, just to burn off some energy.

And then Sophie, she's brutally honest.

You know, I walked up to school today. She was like, 'I don't like your haircut. I liked it longer.'

(LAUGHS) The first thing she noticed.

RACHEAL: We talk about autistic children not having a filter.

Sophie certainly does that.

You know, she will tell you exactly what she thinks, if you want to hear it or not.

And sometimes that's OK.

She's learning when to think it in her head but not say it out loud.

- So we gotta get that HDMI cable up.

- And because we can't get rid of the connector, it's gonna be a big hole there.

- We'll just put a little plate there to cover it.

- What I was actually thinking is if we look under the bracket, there's a hole.

You could go under the bracket and feed out through there.

- Liam's our go-to guy for IT in the house, because there are benefits to being on the spectrum.

Logical thinking nowadays is very important, as everything's based around computers.

And visualisation, things like that, being able to see things inside your head, what something will...

how it will work or what it looks like.

So he's learning how to be a plumber and an electrician and an IT engineer.

He's learning all of those skills, and he's only 14.

- Hey, Dad? - Yeah?

- I'm gonna give it a tug. - OK.

RACHEAL: When I met Aidan, he would talk about his adolescence being the most challenging part of his life,

that social awkwardness.

Having a parent in the family with autism makes this job a lot easier,

because he can share with me how it feels,

and I can learn from Aidan

about how he sees things.

- You ready? - So just hold it there. Jiggle it so it'll come down.

Now the boys are sort of coming to that teenage age,

I can see the potential areas where they're going to struggle,

because it's easy to sort of put behaviour down to just being rude.

Like, I've got a learned response of how I need to act.

It's taken a long time to kinda piece together by making mistakes.

You know, if something goes wrong, then I need to sorta show some empathy,

even though I don't really feel it, and that's just quite hard.

And that's why I don't like large groups of people. I don't like having to...

I've gotta really work hard to think about,

'Oh, how do I need to behave? How I should be acting? Because I might upset people.'

And I can do that quite easily, by being very blunt.

So fortunately we've got Connor and Racheal that are very good at seeing the other side.

- Shall we do those things, then?

RACHEAL: Liam has a really nice relationship with a girl from his school.

They've been together as a couple for over a year now,

and it's been really, really helpful for Liam's growth to work out the rules of relationships.

- Been going out with my girlfriend for about a year.

And it's the best year of my life, actually.

Yeah, we have said 'I love you' to each other.

I'm pretty sure I understood it.

Because it's just, you know, it's something that you should really understand before you say it.

Because it takes a lot of thinking time for me to actually understand a big thing like that.

It's physically and emotionally exhausting for me to understand small emotions, so....

I think, yeah, it was something that I really meant.

- Connor, you wanna play Space Engineers? - Connor, play Space Engineers!

- CONNOR: No. - It's boiling the surface above it.

- Don't tease him about his overheating laptop.

- (COMPUTER GAME MUSIC PLAYS) - # Do-do-do-do-do-do-doo... #

- Connor, server's up. Are you playing?

- No. - Come on.

It's kinda neat as a family.

We've got this sorta common denominator between a lot of us, which also really worries me.

It kind of excludes Connor a little bit.

We have to be very careful, because we find ourselves putting a lot of effort

into supporting the other three kids.

So I'm very aware that he feels like he gets left out.

RACHAEL: It is really hard, and I'm so mindful that he doesn't get lost in that busyness

of three children with quite strong needs.

He just wants to be a typical young man and do typical young man things.

- Hello. How are you?

Hi.

- Auntie Anne, she is incredible to this family.

She gives Connor one-to-one time. It's really focussed all about him.

So once a week he goes out on a Saturday for the entire day.

Go and play soccer, and then they go off and do the market and fixing cars and then come home,

so it's a really nice break for him.

- Get some cake, boys.

- Cake!

- Get some cake. You need the energy. Well done, Justin.

- Now, this woman here is amazing, because her and her husband, they come early, they put up the tent.

Today they're running a barbecue.

Last time, I think they paid for the sausages and the bread.

They bring Connor to all his games. She is an amazing lady.

- Yummy. A snack.

- I was thinking, you guys have both been so good today

that I was thinking about doing a no-rules night.

- I love no-rules night. - Huh?

- I like rules night.

- What's no rules for you, Soph?

- Stay up late.

- One night, I was just so tired, 'Right, no rules.

'And as long as you guys are doing the right thing, I'm not gonna set any rules.'

All of a sudden, we had these really well-behaved children that weren't fighting with each other

and having a whole lot of fun, and I'm getting a break.

And it just worked.

- See these loops? We can use these and just loop them up.

And then we just need to get this loop up there.

- We have nature play school one day a week.

I was aware that in the New Zealand legislation, children can attend a different school one day a week.

We've also learnt that Harry and Sophie clearly don't enjoy going to school five days a week.

So I started to look for what would be the right fit for them to have a break

and do what they love to do, which is to have no rules and to be free.

And for Harry in particular, he loves bugs and birds.

Need this...

No, guys, stop. We need this to be, like, super-tight.

- Really, Abby, don't go on it. - Kim, I need you to pull this again.

- Can you pull this, please? - I can.

- This. - Oh, OK. - Everyone get off.

- So, with our nature-based play programmes, all our curriculum is looked at

from both a sensory child-development point of view,

as well as an education and fun point of view.

So it's a bit more holistic with what we have children doing throughout the day,

with a really nice balance of some intentional teaching and a lot of child-led play.

Hey, two people on this side, three people on this side, three people on this side.

Three, two, one, lift!

Nature school is really cool, because there's Kim.

She brings in tools and hammers and saws and stuff like that, and we cut down the dead trees.

There was a borer. We saw two borer.

There was heaps of huhu holes as well, and if you touched the tree, it just fell into dust.

Some of the tree fell into dust.

- Sophie has really hooked in with another girl that's here,

and they are on their own mission a lot of the time.

They have been quite creative and expressive.

And they both have a passion for mud.

Nature school is fun.

Rhea is really cool, and she's my best friend, definitely.

And incredible.

RACHEAL: There's been benefits that I didn't anticipate.

Finding a village. We had this amazing community of very similar-minded parents

who were open and accepting of a little bit different, a little bit quirky.

And these are all things that are really critical to their success as being an adult.

But it takes a huge amount of time and effort to find those resources.

And you also have to spend a lot of time talking to people,

because there's no resource in the community that says, 'Here are all the options that you could chose.'

- Some chilli in there? - No.

- Come on. Guacamole's got chilli in it. - No.

So, every Friday Auntie and Uncle come and have dinner,

and every now and then we have other people over and just say thanks.

- Say thank you for the hard work everyone puts in, and helps us out.

So, tonight we got the Big Liam and Si and Sarah here as well.

They're also carers.

Without Racheal's never-ending efforts to keep the family working smoothly,

we wouldn't be in this situation.

She pulls off this amazing achievement of raising all of us and helping the family grow that.

- Autism has taught me that everybody has your own view on their own life.

I think having a lived experience of disability makes me a richer person.

And I'm super proud of all my children.

I'm really excited about their future,

because I think for all of the kids, that's gonna be something pretty incredible.

I couldn't be more proud of my children. I think they're all incredibly gifted.

It would be a boring life without having some autistic kids.

(GENTLE MUSIC)

Captions by James Brown

Captions were made with the support of NZ On Air.

www.able.co.nz Copyright Able 2020

The Description of Parenting a Family with Autism Spectrum Disorder (My Perfect Family: The Priestleys)