September 13, 2024 • 32 mins
It’s very difficult to get by in society when you don’t use words to communicate. Non-speaking autistic people tend to be invisible, unless they are ‘causing a problem’.
Olympic rower Eric Murray is father to 12 year-old Zac, who is autistic and ADHD. He talks to Sonia Gray about the challenges, the joys and the desperate need for support and understanding.
Guests:
Eric Murray
Anna Middleton - Senior Behaviour Specialist - Explore Services
Resources: Autism NZ https://autismnz.org.nz
Instagram - No Such Thing as Normal Podcast
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Just a note. This episode does contain explicit language.
Speaker 2 (00:06):
Rocking. We're rolling, yeah, rolling.
Speaker 3 (00:10):
I feel like I can just hold this like that.
Speaker 1 (00:12):
You can't. I think it's better if you hold it close.
Speaker 3 (00:15):
I said to my mouth like three two one testing.
Speaker 1 (00:21):
I'm with Eric Murray at his house in Cambridge to
talk about life with his beautiful son Zach.
Speaker 3 (00:27):
But first, where are we going to start?
Speaker 1 (00:31):
The Olympics?
Speaker 4 (00:32):
Eric Murray and Hamish Bomb. Then are the favorites here?
Speaker 3 (00:36):
When did I go I want to be an Olympian?
Speaker 4 (00:38):
Kiwi's going for gold?
Speaker 5 (00:40):
It literally just sucks you in, you know, like you
get sucked into being like this is going to be
my life. I'm going to focus all my attention and
energy on it. And how does that look?
Speaker 4 (00:49):
Surely they have it on a sale of the lad
and nothing should stop Marry getting his gold Madal at Lash.
Speaker 1 (00:55):
What it looked like in the end was two Olympic
gold medals and eight World Championship gold medals. Now he's
focusing all that attention and energy into caring for his son,
and it's a job that does require all of them. Kioda,
I'm Sonia Gray and this is no such thing as
normal series two. I am diving into the complex and
(01:17):
fascinating world of neurodiversity. I'm not an expert, but my
daughter is neurodivergent and a few years ago I was
diagnosed with ADHD. In this series, you'll hear from experts
and from many wonderful people who experience the world in
a unique way. We're looking at neurodiversity from the inside.
(01:48):
This podcast is focused mainly on people whose differences are
not obvious to the outside world. But if you're non speaking,
have extreme sensory issues, or you're very easily overwhelmed, it's
a different kind of challenge, a very intense one for
the whole Far no. In this episode, we're looking at
the experience of those who have high needs. Their differences
(02:10):
or disabilities might be obvious, but we can't lose sight
of the fact that these are people with unique personalities
and passions and something special to offer. They may not
have the ability to speak words, but that doesn't mean
they don't have a voice. Let's talk about Zach. Zach, Oh,
your lovely little boy. Where are you?
Speaker 3 (02:32):
He ain little now?
Speaker 5 (02:33):
Oh? Okay, well he's twelve now. But man, it's funny,
right because you get those kids, you know, and they
just get gross spurts. And in the last eight months,
I reckon he's egrown a lot, which adds to the
whole complexities around his autism and everything.
Speaker 3 (02:51):
He is autistic. Adhd diagnosed diagnosed.
Speaker 5 (02:55):
When he was three, which was which was good, jumped
on the bandwagon with everything. Speech and language therapy was
the main one because he was non verbal. He just
wasn't talking at dayk here they were like, we're trying
to get him on the mat. I'm like, and we
tried everything. You know, special mat do this rewarding with stuff,
and he'd like be engaged for about twenty seconds and
then he's like bang them out.
Speaker 3 (03:17):
And that's why.
Speaker 5 (03:17):
And the teachers knew because they were the ones that said,
we think second needs to go the child of element
Center and they were like, we just think, you know,
he potentially, you know, Adhd could down the path of
autism because he's not talking. But if we get it
early enough, then we can we can help him. And
that was the best thing is that they were like, yes,
there's there's something there.
Speaker 1 (03:40):
Mainstream school didn't work for Zech, so he's at a
special school with just six kids in the class.
Speaker 3 (03:46):
And then that's carried on.
Speaker 5 (03:47):
He went into the base school, which has been absolutely fantastic.
You know, there's six kids in a classroom because he
has very high needs. Yep, he's very very high needs.
Speaker 1 (03:56):
The high needs are compounded by the fact that Zach's
had a lot going on recently. His mum, Jackie, Eric's
ex wife, has always been a constant in his life,
but now she's battling cancer, which is a lot for
any kid to deal with. Both parents are absolutely devoted
to their son, but it's not easy. You mentioned to
(04:19):
me that there's been some challenges recently. Do you want
to talk about those?
Speaker 5 (04:23):
Ah, yeah, over the last probably a year and a
half with puberty and his mother's sick. Because he's had
so much change, I guess as well. There's just so
many different things happening to the poor guy. And because
he's nonverbal, we use a communication device called lamp. It's
on an iPad. He uses callboards at school, so he's
(04:45):
very visual about what he does, but he can't tell
you things. You know, he comes in and he's frustrated
or he doesn't have his iPad. I'm like, make I
get your iPad, and then he doesn't want to, but
then it starts becoming like I'm going to try and
push past you, and then he'll lash out. And it's
okay with me because I'm six foot five and one
hundred and fifteen gaugees.
Speaker 3 (05:05):
The problem is when he's doing it with other people.
You know.
Speaker 5 (05:08):
We've had incidents clear the classroom, Zach's tipping over the
table and throwing shit around the place.
Speaker 3 (05:14):
You know, just gets frustrated.
Speaker 5 (05:16):
And that's the issue. His impulsivity has got beyond manageable state,
probably to a point I had We've had some incidents
in the community, you know, and just just around the
flexibility of him, you know, and we had a very
unfortunate fortunate but unfortunate, fortunate because of the person that
(05:38):
probably happened to and the understanding, but unfortunate because we're
at the golf course. Loves going to golf, but there
were people sitting in his seat right can't sit anywhere else,
which is absolutely fine.
Speaker 1 (05:51):
It's fine normally when there's no one else in this seat.
Like so many autistic kids, Zach needs his environment to
be predictable. Gives him a sense of security. But you
can't ask people who are about to tuck into their food,
to just move tables. So Eric did what he so
often has to do, abought the situation.
Speaker 5 (06:13):
She went outside and I said to the boys, I said, look,
I'm going to take Zach. So I'm about ten to
fifteen steps behind Zach at the stage. He just went
straight up to this kid and bits him on the
arm right and just because he was frustrated, And then
he threw a rock at a car. So now I'm
down about fifteen hundred bucks and whatever. And this kid's
been bitten, and the father's coming around and I'm and
(06:35):
he's like what, and I'm like.
Speaker 3 (06:37):
So damage controls it. Zach in the car.
Speaker 5 (06:40):
I'm sitting there going what just happened, you know, and
getting the pen and paper out, writing a note on
the car that he threw the rock at. And then
I left a note on the guy in his child's car.
And he rang me that night and he said, look,
I understand I've got a friend that's got a kid,
you know, on the spectrum and stuff like that. And
(07:00):
I said, look, I'm really sorry, you know, like what
happened and stuff, and he goes, look it's okay, you know,
you know, I sat there thinking, did I do everything correctly?
Would I have done anything different? I don't think I
would have done anything different, you know. Probably the only
thing different was that I should have followed him out
so that he could he could have lost his frustrations,
and I could have had his iPad and tried to
(07:20):
get him to reason and tried and show me that
he was upset and that sort of stuff. So what
happens if that was somebody else, somebody not understanding about
Zach or autism or.
Speaker 3 (07:34):
ADHD or neurodiverse.
Speaker 5 (07:36):
You know, people that are literally just having a complete
meltdown for no real fault of their own.
Speaker 3 (07:42):
That's just who they are. We could have been in
a real serious situation.
Speaker 1 (07:47):
Eric wants to make it clear, as do I, that
this so called behavior that we say is socially unacceptable
is not a choice for Zach. For him, the world
is very dysregulating. He really struggles to control his impulses,
but that is not always met with understanding from the public,
and it can be demoralizing. Eric tells me that the
(08:08):
day before he and Zach walked into a shop and
Zack just opened up a bag of Chippy's, something we'd
all probably like to do, but the shopkeeper was not
impressed and angrily demanded payment for it.
Speaker 5 (08:21):
It's not that serious, But at the same time, it's like,
if this happens all the time, you go somewhere.
Speaker 1 (08:26):
And then what happens is you stop going anywhere, and
that happens to a lot of families, and it's like
that your life strenth down. The kids need to be
out and practice the social stuff. So it's sort of
a no win situation.
Speaker 3 (08:41):
It is a no win situation.
Speaker 5 (08:42):
And all that I've been thinking about for Zach is like,
how can I get him into society?
Speaker 3 (08:47):
You know, how can I get him there?
Speaker 5 (08:48):
And a lot of it is getting them out and about, right,
because the more that you're in your local community, the
more that people understand you, which is you know, one
of the big reasons. You know, zach'san and Cambridge, He's
brought up here. A people know who I am and
they see Zach, so most people will put two and
two together. So if you go somewhere and something happens,
(09:09):
it's not a big deal. I'm in a privileged position,
right and I know it, Whereas I can see a
whole lot of other people that don't have the ability
to be able to do what they're doing with their
children that I can with Zach.
Speaker 1 (09:24):
Eric doesn't want to be talking about the tough stuff,
but he's worried. He's worried about others in the same
situation without the advantages that he has. It's very hard
to comprehend unless you're living it. But society can play
a part because kiuds like Zach have so many wonderful
qualities in the community often doesn't see them. So let's
(09:47):
talk about Zach because we've talked a lot about his
challenges and about how society doesn't understand them. But I
feel like every person has something to contribute, and for
some that, say non speaking or neurodivision, it might be
a little bit more difficult to find their thing. Can
you just talk about his.
Speaker 3 (10:07):
Well, that's and that's good, the good stuff. Yeah, well
the good stuff.
Speaker 5 (10:10):
The thing is he's got this amazing photographic memory, right
and he takes like I'll be I'll show you show
all the photos that he took some more. He's just
right into photography and he'll be watching something on TV
and he just wants to take pictures of stuff and
he'll he'll if he's got an iPad on my phone
and I'm taking thousands of photos, thousands, and they just
(10:32):
have scre like he'll pause the screen at one point
and take a picture and and so he's like he's
living through the screen, so trying to figure out and
hence why is very visual, right, And and he will
find a place on my phone through twenty five or
thirty thousand photos back you know, ten years or whatever
it is, and he'll be pointing to it and it'll
be like somewhere that we've been and we like go
(10:54):
and I'm like, MAYSVGPL can't go there, you know, but
he'll remember it and he'll be like go and like,
you know, you go to a different supermarket that you've
been to before, and you'll be like, I'll go find me,
you know, where where the Kinder Surprise was or something
or whatever it is, and he'll go. He'll he'll take
you down the aisle that it's on, and I'll be like, Jesus,
even I was going to have to do a couple
(11:14):
of laps and read the sign.
Speaker 3 (11:16):
He an't reading the signs. He just knows.
Speaker 1 (11:18):
He's just got that instinct, got that instinct to.
Speaker 5 (11:20):
Know where he goes and I'm like wow, and that
you know when when you do letters and he'll spell countdown,
but he'll spell it from the middle out, like alternating
side to side, and you're like, I don't even know
if I could do.
Speaker 3 (11:30):
That, you know what I mean?
Speaker 1 (11:32):
That's I think that it's a.
Speaker 3 (11:33):
Visual and that's the thing with Zach. He's very visual.
Speaker 5 (11:36):
And then he'll be doing creations and you know, and
he'll rip paper and he rips books, which is one
of his things.
Speaker 3 (11:42):
We don't have too many books around.
Speaker 5 (11:44):
But then he'll he'll peel out like a certain piece
of the book and stick it on with something else.
So there's something that he's trying to create in his head.
And that's the whole thing, is trying to figure that out.
And like it doesn't matter what he does, it's always different.
Speaker 2 (11:58):
You know.
Speaker 3 (11:58):
At school, they'll be like, we'll give him a jigsaw.
Speaker 5 (12:00):
Once he's done it, he'll never ever do it again,
never do it again, because he's like, I don't why
done it? And I think that's why he likes. He
likes new things. He likes being in new environments, which is.
Speaker 3 (12:12):
Great, right, real good.
Speaker 5 (12:15):
And he'll look around, he takes it all in and
you just see him and he's just looking at everything.
He probably like a Jason Bourne, where it's like he
knows how many steps it is to the front door,
but he won't tell me, right, I don't know.
Speaker 3 (12:26):
I know he can't. And that's the thing. And so
looking at.
Speaker 5 (12:33):
The creativity that he has, but he wants to do
stuff like that. He wants to cry and be like,
let's plant some plants or whatever. He helping man. He
the first person trying to put spade in, you know.
And it's and so there's all of this stuff. When
we're trying to build anything, he the first person there
trying to like give me something. I'll but we don't
need that yet. You know your past Madrill. And he'll
be there wanting to see creation. And so that's that's
(12:54):
the stuff that really floats his boat. And that's what
he enjoys and he gets stimulus to buy. But it
is very visual, right.
Speaker 3 (13:03):
And that's the thing.
Speaker 5 (13:04):
Is everything, everything in terms of speaking wise, has gone
into his visual and that's where he's the expert. He
is absolute and as I say, just he knows and
the memory and the places that he goes and the
things that he does and whatever he knows where it is.
Speaker 1 (13:21):
But there's not a lot of people that would encounter
in day to day that would have any idea of that.
And that's kind of what bugs me. It's like, And
I know it's challenging because when you're non verbal, that's
how we communicate. But it's almost a matter of with
all these individuals, like finding what the thing is that
makes them tick. When you're parenting a child with special needs,
(13:55):
the highs are high and the lows are really low.
High performance sport isn't much different. Because I love the Olympics.
But I watched the footage of the twenty twelve and
twenty sixteen one last night and tear it up again,
and I said to my husband, I know this, it
is twelve years old, and I know what happens. I
(14:17):
know they win, and yet still I'm nervous. And it's
I think it's because you've done all this work for
this moment. You're behind for the first five hundred meters
or something.
Speaker 4 (14:30):
Marry Anne Bond, So they would be the favorites, but
there's work to be done yet out there on the lake.
Speaker 1 (14:37):
How do you not just kind of lose it? How
do you not let that little voice in your head
go oh no, oh, no, oh yeah.
Speaker 3 (14:46):
It is all about preparation, right and.
Speaker 5 (14:49):
Just knowing that, Okay, if we put the work in,
we've done the times, then all you can realistically, and
I know people love the whole one hundred and ten
percent at high performance level doesn't happen, you know, very
very seldom are your breaking records, you know, that sort
of thing. And if they are, they're getting beaten just slightly,
and that's one hundred percent.
Speaker 4 (15:10):
And it will be gold for New Zealand, for Eric
Marray and Hateishpond.
Speaker 5 (15:16):
Confidence on the other side is like, as long as
we do what we've been practicing, and it might not
be perfect, and there might be curve balls and there
might be differences in the race or whatever, but as
long as we do that hand on art, if we
had lost, I would have been like, we're going to
have done anymore. So that's why when you ever hear
people going yet train being going real god, you know,
you'll be like, we're on And that's the key to it.
(15:38):
It's not a secret, not a secret.
Speaker 2 (15:40):
I know.
Speaker 1 (15:40):
But so then I'm thinking, you do the mental preparation
is so extensive. So then does that filter into real life?
Speaker 3 (15:49):
Ah?
Speaker 5 (15:49):
Yeah, I had enough learning and understanding from psychology and
sports that I could take into like I guess the
psychology around Zach and everything because it is because you
just sit there going why me, this is terrible? You
don't see any advancement or you're like is this ever
(16:10):
going to be? Is this ever going to get better?
That's all down to that acceptance understanding that this is
what life's going to be like for your child.
Speaker 1 (16:22):
For Eric, the acceptance part came pretty quickly, but so
many parents, myself included, tried desperately, manically almost to fix
the problem and we end up burning out. Like Eric said,
there is no one hundred and ten percent, not as
an Olympian or as the parent of a child with neurodifferences,
(16:43):
but there is preparation.
Speaker 3 (16:45):
I was very quickly like what am I going to
do for his future? Right?
Speaker 5 (16:49):
And so looking at plan A, Plan B, Plan C,
and then it all whatever. But I was like, how
can I get him to be in a safe place
by the time he's eighteen? At the end of the day,
you're trying to control the controllables, right, because that's all
you can do. You know this, write everything down what
can I can control and what can't I control, and.
Speaker 3 (17:10):
Just to deal with those because that stuff there is.
Speaker 5 (17:12):
Irrelevant, right, And you're just like, can I deal with
the toileting or the eating or this?
Speaker 3 (17:16):
Yes? Yes, yes.
Speaker 5 (17:17):
What you're doing is you're just trying to make a
safe environment. So that's a controllable right, nothing around that
he can throw or do or whatever.
Speaker 3 (17:24):
And that's my norm. And so it's just then finding
out when when do you relax? When do you do this?
Speaker 5 (17:29):
And it's and it's navigating society and having to pay
your bills right and the.
Speaker 3 (17:35):
Work and stuff like that.
Speaker 5 (17:36):
Positively, it was has always been about making Zach safe.
Speaker 1 (17:42):
Its steps your energy, though, doesn't it And you're always thinking.
Speaker 5 (17:45):
On your feet because the fact is that he will
need that, he will need our support for as long
as we're around, right, we can't just be like gratulator,
is that you go live here for a while, right,
And yes, if he got to an extreme case, which
I'm not going to let happen, I'll do everything I'm
i power to make sure that didn't happen. He will
get to a point where he will still need full
(18:07):
time care. But I'm not going to be around forever,
you know.
Speaker 3 (18:09):
And that's the hard part is that's what a lot
of people worry about.
Speaker 5 (18:13):
It's like, what's going to happen when they had eighteen?
What's going to happen when I can't look after them anymore?
These are all the questions that you think about for
the future. And I know we have to think about that,
that lengths of time out.
Speaker 1 (18:28):
It's something most parents don't have to consider, but it
weighs very heavily on the minds of those who know
their children will always need help. In fact, it consumes them.
Speaker 2 (18:39):
It is something that is why the stress is so
much higher, I think, especially when you're parenting somebody with
higher needs.
Speaker 1 (18:46):
Asia Middleton is a behavior specialist at the Support service Explore.
She hears these kind of concerns every day from the
far no she works with. It's one she's grappled with herself.
Is the parent of a non speaking autistic child.
Speaker 2 (19:02):
Well, I apologize ahead of time if I have to
jump up my son's home from school, so he's going
to run occasionally run through. He might be loud. That's fine, okay, Sorry,
He's six foot three and one hundred and thirty kilos
at fifteen. So if you can imagine that kind of
(19:23):
running through your house, my whole house shapes. We live
in the country, so neighbors don't get afforded.
Speaker 1 (19:28):
But yeah, it's yeah, I know, that's all good. Aysia
is a real asset to the families she works with
because she's dealt with the same fears herself.
Speaker 2 (19:38):
This idea of will they be able to live independently?
Will they need support? But you have to think about
those things earlier. But you can get bogged down in
the oh my gosh, when I die, what is that
going to look like? And I think getting really strong
ties in your community, having people who know your child,
who understand. So we do have to kind of look
at our personal work out what makes them tick, how
(20:00):
do they work. And for the non verbal or the
minimally verbal, that can be quite tricky.
Speaker 3 (20:06):
You just don't know his emotion because he's not verbal.
Speaker 5 (20:08):
You have to read it right, and us as parents,
we need to understand it so that we can say, hey, Lot,
some friends starts looking after him Lot. If he doesn't
want to be around, he's going to do this right.
This tends to be the behavioral passion if he does,
this tends to be the behavioral pattern on the other side,
and you literally have to have an operating.
Speaker 1 (20:25):
Man Yeah you do. Yeah, he literally does have an
operating manual, as does Ayisha Coddington, although she calls hers
a cheat sheet. Getting regular breaks is vital, but the
work that goes into prepping the person who's giving you
the break is a job in itself. Asha says changes
to disability funding have made it even harder.
Speaker 2 (20:48):
They have become so hard to make things more difficult
for families because if you've got a high needs child,
that chances of you finding a respect person to come
in and work with your child, especially if there's a
language barrier or there's no language, is next to impossible.
It's hard enough to find a good teacher ade or
a good school at alone finding somebody, and we require
(21:10):
it because you know, just the mess or the things
you'd have to do in the morning, and lots of
those things becomes a really crawling job and everyone has
to work. Now you know how many people can stay
at home with their children and actually survive or be
able to pay bills. It's almost impossible. So, yeah, services biggest,
biggest failing.
Speaker 3 (21:29):
We have.
Speaker 1 (21:31):
When the services aren't there, the responsibility falls back on
the parents, and unless you're living it, it's hard to
comprehend the relentlessness of it all.
Speaker 5 (21:43):
Where like, moment Zac's up, I'm eyes on the price, right,
and if it's five five point thirty, fine, we're up right,
and that's it. So but from that five o'clock until
the moment he basically is sleep. If he's worth me,
it's eyes on the price. It's that's the difficult cruelty.
I think that most people understand, like just miss slightly,
(22:04):
whereas with a normal child, you're like, you don't have
to be fully onto it. Put the kids to bed,
they can look after themselves a little bit. It's a
lot more relaxing because there's not that uncertainty of like
what's going to happen. Those complexities mean you just you're on,
you're on, you're on, and you don't have that time
to go.
Speaker 1 (22:20):
I have talked to a lot of people about trauma
with parents PTSD, but you know, what you've been through
is quite can be quite traumatic.
Speaker 5 (22:28):
Some of it's very rewarding and you're like, you know,
learning a whole lot of stuff, and then other times
you want to sit in the shair and have a cry.
And so a lot of the times, you know when
I'm when I am, when you're just sitting there questioning
like is this ever going to happen? You know, like
you come home from school and they're like you know,
(22:48):
you've had the phone call and you've gone to pick
them up and they tell you about the incident, and
you're just like you know, and you're taking because you're like,
this is this isn't great? Like this is this has happened,
and it's but it all runs through, right, it all
runs through, and you need help, right, And my personality
traits have just started to try and problem solve. Yeah,
(23:11):
and then but the problem is with that is that
I've had many occasions, man, and I've I've gone down
rabbit holes, right, And you're sitting there on the computer
at two o'clock in the morning, You're like, the fuck
is a're looking at the first place, right, what's what's
what are we going to wake up to tomorrow?
Speaker 3 (23:24):
And what's going to happen there? But that's where it
starts to get on top of you.
Speaker 5 (23:28):
And I get to points where I just you just
because your brain is on and on and on and
on all the time. Right, And it's like I'm sitting here,
going what time do I need to leave to go
pick them up? It's good, right, half an hour, Ito's done.
It is just there's no time to just sit down
and be like decompress.
Speaker 3 (23:44):
Right.
Speaker 1 (23:44):
And and just the fact that the hyper vigilance all
the time, having to be on all the time isn't
great for your nervous system.
Speaker 3 (23:53):
I'm not going to hide it.
Speaker 5 (23:54):
Like the reason I go to the doctor is to
get medication to just help to be like, right, what
needs to be done?
Speaker 3 (24:00):
You've got to keep moving.
Speaker 1 (24:16):
Most of us take speaking for granted, but it's a
really complicated process, and if you have motor control or
sensory issues, it can be very difficult or impossible to
form words. An autistic person may not use words themselves,
but that doesn't mean they're not understanding the words other
people are using. Non speaking isn't non thinking or non feeling.
(24:39):
Yet we often act like these individuals are not even
in the room. Behavior specialist Ayesha knows this well.
Speaker 2 (24:47):
It's hard because people do talk about them. My son,
you know, will go to an appointment and I want
you to list all the negative things, and it's like,
I don't want to do that. He's in the room.
Why would I talk about him like that in front
of you? Don't understand that? So yeah, get people to understand.
I guess where that person's comprehension is what they can do.
The most disabling factor for all our guys is society. Unfortunately,
(25:11):
it's not really get up for us. It's not really
if we could just, you know, do this a bit better. Hi, Hi, Hey,
how are you?
Speaker 1 (25:27):
Five? Bag? In Cambridge? Eric's picked up Zach from school
and I finally get to meet him. What are you
guys doing?
Speaker 3 (25:35):
We had to stop one down here is run out of.
Speaker 1 (25:40):
Eric's helping Zach butter some toast too much? Ye Disney
movies playing. There's a bit of clanging and banging, a
regular after school situation. Done amazing. I I want to
see how it was. It's yeah, lamp is the communication
(26:03):
app on Zach's iPad. I'm really keen to give it
a go because in my head I'll be able to
have a chat.
Speaker 5 (26:09):
With should be right here, that's it, and then he'll
go eight a French fries.
Speaker 3 (26:23):
I wanted French fries and so the idea is that
it will be like go.
Speaker 1 (26:29):
It didn't occur to me that the communication device would
be something you had to learn. Zach does use it,
but it's not really designed for having a back and
forth conversation.
Speaker 3 (26:40):
Car It's quite complicate.
Speaker 1 (26:43):
It's not I mean, it's not straightforward, is it. But
there are other ways of communicating. Zax is keen to
take me to his room to see his artwork. And
Eric's right, his son is super creative.
Speaker 5 (26:55):
Trants you want to show you good ones doing lately,
we don't know what he's actually trying to do, but
he gets really once he's done it, he gets.
Speaker 3 (27:05):
Quite obsessed with you, not like or like only when
he's done it. But then after a while he's like.
Speaker 1 (27:12):
Life isn't easy. But the bond between this father and
son is strong.
Speaker 5 (27:17):
So we walk a lot, you know, down to the supermarket,
We do our routine.
Speaker 3 (27:21):
He knows the way, all.
Speaker 5 (27:22):
This sort of stuff for a bike ride. We do
all this sort of stuff where but you know, whatever,
this this fun stuff that we can do together, but
there's not there's a lot of people that are in
my position, you know, and that and that's the that's
the scary part for me because I sit there going Jesus,
how can we help?
Speaker 3 (27:37):
You know, what can I do to help?
Speaker 5 (27:39):
But I can't really do anything to help because I'm
full guess with Zach.
Speaker 3 (27:42):
And if Zach became a point where.
Speaker 5 (27:44):
They're like, actually he's let's say, and I've thought about it,
it's like worst case scenarios, schools like we can't have him.
Speaker 3 (27:49):
He's hell's a safety issue. Where does he go? I
have to change again?
Speaker 5 (27:57):
And it doesn't it's not a great change, which is
fine and if I had to do it, but I'm like,
how I'm going to bay my mortgage? Am I going
to need to adapt or as their you know, family
and other resources that can come in, or do I
have to make a change and incorporate Zach and that?
And That's a lot of what I've been thinking is
I'm being like, well, you know, he gets fully in
(28:19):
the renovation with me, right, He loved taking rubbish out.
Speaker 3 (28:24):
I give him the hammer. He will go what am
I going to do going forward?
Speaker 5 (28:27):
Like we do we get into landscaping or something, and
he comes part of it, you know, because he'll push
the wheelbear around. He likes carrying stuff, he likes seeing
things being created. So I'm like, is this how it's
going to be? You know, do I need to find
a block of land and we start becoming horticulture, right,
because he loves planting trees, So we're going to start
planting seeds and then grow them into trees and then
(28:50):
have to sell them, Like, is that what we're going
to have to do to earn an income? And in
the same time as we're doing that, and you do
some of that with him and then he gets some
care and some education, everything else carries on and through that, right,
but then that moves them because what I need to
look at is when it moves him into the future.
And we get to this eighteen where it's like child's
(29:11):
let school. Now, here's a few places they can go
for like you know, care and day things and stuff
like that, but there's not like, hey, we're just going
to keep them through an educational system and help you.
It falls back on you as a parent, and I
know that there's care and stuff, but we talk about
it and it's one of the things we're doing with
autism New Zealand and housing.
Speaker 3 (29:31):
As you get stuck in the poverty cycle, you get
to twenty twenty one.
Speaker 5 (29:35):
And problem is, now you are an adult, you really
can't work full time because of the stress on your
brain for no fault of your own, just your own
brain chemistry. You can't work around a whole lot of
people and half of the neurodiversent community. A're just like,
I want to work. I want to work, but I
can't go into this office. There's too much noise, too
many people. But I'm really good on the computer.
Speaker 1 (29:58):
And it's like, I'm so sorry about it, but very
unlucky to get through the interview process.
Speaker 5 (30:04):
Absolutely, the whole model is fucked. There surely is a
better way.
Speaker 1 (30:11):
He's got to be a better way. But it's about
quality of life. And I like just listening to you
talk about all your ideas and the options for Zach,
and it's big and it's grand. Yeah, but you know,
I'm just thinking your devotion is so I understand it's beautiful.
(30:35):
You would give up everything.
Speaker 5 (30:36):
I have accepted that Zach will have a very minimal
functional life in society, but I'm trying to make it
the best for him that possible. Right, There'll be people
that will listen to this and go, fuck yeah, same.
I don't know if our kid's ever going to get
to that point, or if they're going to do that,
and then there's other people going, well, I hope we do,
you know, and all that.
Speaker 3 (30:54):
Sort of stuff.
Speaker 5 (30:55):
Don't get me wrong, I'm trying to but the fact
that he doesn't communicate. We've tried for years and years years.
There's going to be a point in time where you're like, well,
I don't think you're even going to talk. So we've
done everything we can. Is it's going to be the
way it goes, and then you have to figure that
out as a family unit, as a support network, everything
around you, as a person, And that's where I'm at.
Speaker 1 (31:20):
In the meantime, he's focused on the gold, his twelve
year old son who loves a tickle.
Speaker 3 (31:28):
A tickle you. I'll get it.
Speaker 2 (31:31):
I'll get to speak, I'll get to speak. I'll get
it right Jack, you go say.
Speaker 1 (31:36):
Goodbye, say Zack, Oh, I got a kiss.
Speaker 2 (31:41):
See your buddy.
Speaker 1 (31:43):
It's so nice to meet you. You take care. If
you like this podcast, please rate and review it. It
helps people find it. No such thing as normal as
produced and presented by me Sonia Gray. Nathan King is
the editor. Owen O'Connor and Mitchell Hawks are executive producers.
Production assistant is Beck's War. The series is brought to
(32:06):
you by the New Zealand Herald and team uniform and
it's made with the support of New Zealand on air.
New episodes of No Such Thing as Normal are available
every Saturday wherever you get your podcasts.
Just a note. This episode does contain explicit language.
Speaker 2 (00:06):
Rocking. We're rolling, yeah, rolling.
Speaker 3 (00:10):
I feel like I can just hold this like that.
Speaker 1 (00:12):
You can't. I think it's better if you hold it close.
Speaker 3 (00:15):
I said to my mouth like three two one testing.
Speaker 1 (00:21):
I'm with Eric Murray at his house in Cambridge to
talk about life with his beautiful son Zach.
Speaker 3 (00:27):
But first, where are we going to start?
Speaker 1 (00:31):
The Olympics?
Speaker 4 (00:32):
Eric Murray and Hamish Bomb. Then are the favorites here?
Speaker 3 (00:36):
When did I go I want to be an Olympian?
Speaker 4 (00:38):
Kiwi's going for gold?
Speaker 5 (00:40):
It literally just sucks you in, you know, like you
get sucked into being like this is going to be
my life. I'm going to focus all my attention and
energy on it. And how does that look?
Speaker 4 (00:49):
Surely they have it on a sale of the lad
and nothing should stop Marry getting his gold Madal at Lash.
Speaker 1 (00:55):
What it looked like in the end was two Olympic
gold medals and eight World Championship gold medals. Now he's
focusing all that attention and energy into caring for his son,
and it's a job that does require all of them. Kioda,
I'm Sonia Gray and this is no such thing as
normal series two. I am diving into the complex and
(01:17):
fascinating world of neurodiversity. I'm not an expert, but my
daughter is neurodivergent and a few years ago I was
diagnosed with ADHD. In this series, you'll hear from experts
and from many wonderful people who experience the world in
a unique way. We're looking at neurodiversity from the inside.
(01:48):
This podcast is focused mainly on people whose differences are
not obvious to the outside world. But if you're non speaking,
have extreme sensory issues, or you're very easily overwhelmed, it's
a different kind of challenge, a very intense one for
the whole Far no. In this episode, we're looking at
the experience of those who have high needs. Their differences
(02:10):
or disabilities might be obvious, but we can't lose sight
of the fact that these are people with unique personalities
and passions and something special to offer. They may not
have the ability to speak words, but that doesn't mean
they don't have a voice. Let's talk about Zach. Zach, Oh,
your lovely little boy. Where are you?
Speaker 3 (02:32):
He ain little now?
Speaker 5 (02:33):
Oh? Okay, well he's twelve now. But man, it's funny,
right because you get those kids, you know, and they
just get gross spurts. And in the last eight months,
I reckon he's egrown a lot, which adds to the
whole complexities around his autism and everything.
Speaker 3 (02:51):
He is autistic. Adhd diagnosed diagnosed.
Speaker 5 (02:55):
When he was three, which was which was good, jumped
on the bandwagon with everything. Speech and language therapy was
the main one because he was non verbal. He just
wasn't talking at dayk here they were like, we're trying
to get him on the mat. I'm like, and we
tried everything. You know, special mat do this rewarding with stuff,
and he'd like be engaged for about twenty seconds and
then he's like bang them out.
Speaker 3 (03:17):
And that's why.
Speaker 5 (03:17):
And the teachers knew because they were the ones that said,
we think second needs to go the child of element
Center and they were like, we just think, you know,
he potentially, you know, Adhd could down the path of
autism because he's not talking. But if we get it
early enough, then we can we can help him. And
that was the best thing is that they were like, yes,
there's there's something there.
Speaker 1 (03:40):
Mainstream school didn't work for Zech, so he's at a
special school with just six kids in the class.
Speaker 3 (03:46):
And then that's carried on.
Speaker 5 (03:47):
He went into the base school, which has been absolutely fantastic.
You know, there's six kids in a classroom because he
has very high needs. Yep, he's very very high needs.
Speaker 1 (03:56):
The high needs are compounded by the fact that Zach's
had a lot going on recently. His mum, Jackie, Eric's
ex wife, has always been a constant in his life,
but now she's battling cancer, which is a lot for
any kid to deal with. Both parents are absolutely devoted
to their son, but it's not easy. You mentioned to
(04:19):
me that there's been some challenges recently. Do you want
to talk about those?
Speaker 5 (04:23):
Ah, yeah, over the last probably a year and a
half with puberty and his mother's sick. Because he's had
so much change, I guess as well. There's just so
many different things happening to the poor guy. And because
he's nonverbal, we use a communication device called lamp. It's
on an iPad. He uses callboards at school, so he's
(04:45):
very visual about what he does, but he can't tell
you things. You know, he comes in and he's frustrated
or he doesn't have his iPad. I'm like, make I
get your iPad, and then he doesn't want to, but
then it starts becoming like I'm going to try and
push past you, and then he'll lash out. And it's
okay with me because I'm six foot five and one
hundred and fifteen gaugees.
Speaker 3 (05:05):
The problem is when he's doing it with other people.
You know.
Speaker 5 (05:08):
We've had incidents clear the classroom, Zach's tipping over the
table and throwing shit around the place.
Speaker 3 (05:14):
You know, just gets frustrated.
Speaker 5 (05:16):
And that's the issue. His impulsivity has got beyond manageable state,
probably to a point I had We've had some incidents
in the community, you know, and just just around the
flexibility of him, you know, and we had a very
unfortunate fortunate but unfortunate, fortunate because of the person that
(05:38):
probably happened to and the understanding, but unfortunate because we're
at the golf course. Loves going to golf, but there
were people sitting in his seat right can't sit anywhere else,
which is absolutely fine.
Speaker 1 (05:51):
It's fine normally when there's no one else in this seat.
Like so many autistic kids, Zach needs his environment to
be predictable. Gives him a sense of security. But you
can't ask people who are about to tuck into their food,
to just move tables. So Eric did what he so
often has to do, abought the situation.
Speaker 5 (06:13):
She went outside and I said to the boys, I said, look,
I'm going to take Zach. So I'm about ten to
fifteen steps behind Zach at the stage. He just went
straight up to this kid and bits him on the
arm right and just because he was frustrated, And then
he threw a rock at a car. So now I'm
down about fifteen hundred bucks and whatever. And this kid's
been bitten, and the father's coming around and I'm and
(06:35):
he's like what, and I'm like.
Speaker 3 (06:37):
So damage controls it. Zach in the car.
Speaker 5 (06:40):
I'm sitting there going what just happened, you know, and
getting the pen and paper out, writing a note on
the car that he threw the rock at. And then
I left a note on the guy in his child's car.
And he rang me that night and he said, look,
I understand I've got a friend that's got a kid,
you know, on the spectrum and stuff like that. And
(07:00):
I said, look, I'm really sorry, you know, like what
happened and stuff, and he goes, look it's okay, you know,
you know, I sat there thinking, did I do everything correctly?
Would I have done anything different? I don't think I
would have done anything different, you know. Probably the only
thing different was that I should have followed him out
so that he could he could have lost his frustrations,
and I could have had his iPad and tried to
(07:20):
get him to reason and tried and show me that
he was upset and that sort of stuff. So what
happens if that was somebody else, somebody not understanding about
Zach or autism or.
Speaker 3 (07:34):
ADHD or neurodiverse.
Speaker 5 (07:36):
You know, people that are literally just having a complete
meltdown for no real fault of their own.
Speaker 3 (07:42):
That's just who they are. We could have been in
a real serious situation.
Speaker 1 (07:47):
Eric wants to make it clear, as do I, that
this so called behavior that we say is socially unacceptable
is not a choice for Zach. For him, the world
is very dysregulating. He really struggles to control his impulses,
but that is not always met with understanding from the public,
and it can be demoralizing. Eric tells me that the
(08:08):
day before he and Zach walked into a shop and
Zack just opened up a bag of Chippy's, something we'd
all probably like to do, but the shopkeeper was not
impressed and angrily demanded payment for it.
Speaker 5 (08:21):
It's not that serious, But at the same time, it's like,
if this happens all the time, you go somewhere.
Speaker 1 (08:26):
And then what happens is you stop going anywhere, and
that happens to a lot of families, and it's like
that your life strenth down. The kids need to be
out and practice the social stuff. So it's sort of
a no win situation.
Speaker 3 (08:41):
It is a no win situation.
Speaker 5 (08:42):
And all that I've been thinking about for Zach is like,
how can I get him into society?
Speaker 3 (08:47):
You know, how can I get him there?
Speaker 5 (08:48):
And a lot of it is getting them out and about, right,
because the more that you're in your local community, the
more that people understand you, which is you know, one
of the big reasons. You know, zach'san and Cambridge, He's
brought up here. A people know who I am and
they see Zach, so most people will put two and
two together. So if you go somewhere and something happens,
(09:09):
it's not a big deal. I'm in a privileged position,
right and I know it, Whereas I can see a
whole lot of other people that don't have the ability
to be able to do what they're doing with their
children that I can with Zach.
Speaker 1 (09:24):
Eric doesn't want to be talking about the tough stuff,
but he's worried. He's worried about others in the same
situation without the advantages that he has. It's very hard
to comprehend unless you're living it. But society can play
a part because kiuds like Zach have so many wonderful
qualities in the community often doesn't see them. So let's
(09:47):
talk about Zach because we've talked a lot about his
challenges and about how society doesn't understand them. But I
feel like every person has something to contribute, and for
some that, say non speaking or neurodivision, it might be
a little bit more difficult to find their thing. Can
you just talk about his.
Speaker 3 (10:07):
Well, that's and that's good, the good stuff. Yeah, well
the good stuff.
Speaker 5 (10:10):
The thing is he's got this amazing photographic memory, right
and he takes like I'll be I'll show you show
all the photos that he took some more. He's just
right into photography and he'll be watching something on TV
and he just wants to take pictures of stuff and
he'll he'll if he's got an iPad on my phone
and I'm taking thousands of photos, thousands, and they just
(10:32):
have scre like he'll pause the screen at one point
and take a picture and and so he's like he's
living through the screen, so trying to figure out and
hence why is very visual, right, And and he will
find a place on my phone through twenty five or
thirty thousand photos back you know, ten years or whatever
it is, and he'll be pointing to it and it'll
be like somewhere that we've been and we like go
(10:54):
and I'm like, MAYSVGPL can't go there, you know, but
he'll remember it and he'll be like go and like,
you know, you go to a different supermarket that you've
been to before, and you'll be like, I'll go find me,
you know, where where the Kinder Surprise was or something
or whatever it is, and he'll go. He'll he'll take
you down the aisle that it's on, and I'll be like, Jesus,
even I was going to have to do a couple
(11:14):
of laps and read the sign.
Speaker 3 (11:16):
He an't reading the signs. He just knows.
Speaker 1 (11:18):
He's just got that instinct, got that instinct to.
Speaker 5 (11:20):
Know where he goes and I'm like wow, and that
you know when when you do letters and he'll spell countdown,
but he'll spell it from the middle out, like alternating
side to side, and you're like, I don't even know
if I could do.
Speaker 3 (11:30):
That, you know what I mean?
Speaker 1 (11:32):
That's I think that it's a.
Speaker 3 (11:33):
Visual and that's the thing with Zach. He's very visual.
Speaker 5 (11:36):
And then he'll be doing creations and you know, and
he'll rip paper and he rips books, which is one
of his things.
Speaker 3 (11:42):
We don't have too many books around.
Speaker 5 (11:44):
But then he'll he'll peel out like a certain piece
of the book and stick it on with something else.
So there's something that he's trying to create in his head.
And that's the whole thing, is trying to figure that out.
And like it doesn't matter what he does, it's always different.
Speaker 2 (11:58):
You know.
Speaker 3 (11:58):
At school, they'll be like, we'll give him a jigsaw.
Speaker 5 (12:00):
Once he's done it, he'll never ever do it again,
never do it again, because he's like, I don't why
done it? And I think that's why he likes. He
likes new things. He likes being in new environments, which is.
Speaker 3 (12:12):
Great, right, real good.
Speaker 5 (12:15):
And he'll look around, he takes it all in and
you just see him and he's just looking at everything.
He probably like a Jason Bourne, where it's like he
knows how many steps it is to the front door,
but he won't tell me, right, I don't know.
Speaker 3 (12:26):
I know he can't. And that's the thing. And so
looking at.
Speaker 5 (12:33):
The creativity that he has, but he wants to do
stuff like that. He wants to cry and be like,
let's plant some plants or whatever. He helping man. He
the first person trying to put spade in, you know.
And it's and so there's all of this stuff. When
we're trying to build anything, he the first person there
trying to like give me something. I'll but we don't
need that yet. You know your past Madrill. And he'll
be there wanting to see creation. And so that's that's
(12:54):
the stuff that really floats his boat. And that's what
he enjoys and he gets stimulus to buy. But it
is very visual, right.
Speaker 3 (13:03):
And that's the thing.
Speaker 5 (13:04):
Is everything, everything in terms of speaking wise, has gone
into his visual and that's where he's the expert. He
is absolute and as I say, just he knows and
the memory and the places that he goes and the
things that he does and whatever he knows where it is.
Speaker 1 (13:21):
But there's not a lot of people that would encounter
in day to day that would have any idea of that.
And that's kind of what bugs me. It's like, And
I know it's challenging because when you're non verbal, that's
how we communicate. But it's almost a matter of with
all these individuals, like finding what the thing is that
makes them tick. When you're parenting a child with special needs,
(13:55):
the highs are high and the lows are really low.
High performance sport isn't much different. Because I love the Olympics.
But I watched the footage of the twenty twelve and
twenty sixteen one last night and tear it up again,
and I said to my husband, I know this, it
is twelve years old, and I know what happens. I
(14:17):
know they win, and yet still I'm nervous. And it's
I think it's because you've done all this work for
this moment. You're behind for the first five hundred meters
or something.
Speaker 4 (14:30):
Marry Anne Bond, So they would be the favorites, but
there's work to be done yet out there on the lake.
Speaker 1 (14:37):
How do you not just kind of lose it? How
do you not let that little voice in your head
go oh no, oh, no, oh yeah.
Speaker 3 (14:46):
It is all about preparation, right and.
Speaker 5 (14:49):
Just knowing that, Okay, if we put the work in,
we've done the times, then all you can realistically, and
I know people love the whole one hundred and ten
percent at high performance level doesn't happen, you know, very
very seldom are your breaking records, you know, that sort
of thing. And if they are, they're getting beaten just slightly,
and that's one hundred percent.
Speaker 4 (15:10):
And it will be gold for New Zealand, for Eric
Marray and Hateishpond.
Speaker 5 (15:16):
Confidence on the other side is like, as long as
we do what we've been practicing, and it might not
be perfect, and there might be curve balls and there
might be differences in the race or whatever, but as
long as we do that hand on art, if we
had lost, I would have been like, we're going to
have done anymore. So that's why when you ever hear
people going yet train being going real god, you know,
you'll be like, we're on And that's the key to it.
(15:38):
It's not a secret, not a secret.
Speaker 2 (15:40):
I know.
Speaker 1 (15:40):
But so then I'm thinking, you do the mental preparation
is so extensive. So then does that filter into real life?
Speaker 3 (15:49):
Ah?
Speaker 5 (15:49):
Yeah, I had enough learning and understanding from psychology and
sports that I could take into like I guess the
psychology around Zach and everything because it is because you
just sit there going why me, this is terrible? You
don't see any advancement or you're like is this ever
(16:10):
going to be? Is this ever going to get better?
That's all down to that acceptance understanding that this is
what life's going to be like for your child.
Speaker 1 (16:22):
For Eric, the acceptance part came pretty quickly, but so
many parents, myself included, tried desperately, manically almost to fix
the problem and we end up burning out. Like Eric said,
there is no one hundred and ten percent, not as
an Olympian or as the parent of a child with neurodifferences,
(16:43):
but there is preparation.
Speaker 3 (16:45):
I was very quickly like what am I going to
do for his future? Right?
Speaker 5 (16:49):
And so looking at plan A, Plan B, Plan C,
and then it all whatever. But I was like, how
can I get him to be in a safe place
by the time he's eighteen? At the end of the day,
you're trying to control the controllables, right, because that's all
you can do. You know this, write everything down what
can I can control and what can't I control, and.
Speaker 3 (17:10):
Just to deal with those because that stuff there is.
Speaker 5 (17:12):
Irrelevant, right, And you're just like, can I deal with
the toileting or the eating or this?
Speaker 3 (17:16):
Yes? Yes, yes.
Speaker 5 (17:17):
What you're doing is you're just trying to make a
safe environment. So that's a controllable right, nothing around that
he can throw or do or whatever.
Speaker 3 (17:24):
And that's my norm. And so it's just then finding
out when when do you relax? When do you do this?
Speaker 5 (17:29):
And it's and it's navigating society and having to pay
your bills right and the.
Speaker 3 (17:35):
Work and stuff like that.
Speaker 5 (17:36):
Positively, it was has always been about making Zach safe.
Speaker 1 (17:42):
Its steps your energy, though, doesn't it And you're always thinking.
Speaker 5 (17:45):
On your feet because the fact is that he will
need that, he will need our support for as long
as we're around, right, we can't just be like gratulator,
is that you go live here for a while, right,
And yes, if he got to an extreme case, which
I'm not going to let happen, I'll do everything I'm
i power to make sure that didn't happen. He will
get to a point where he will still need full
(18:07):
time care. But I'm not going to be around forever,
you know.
Speaker 3 (18:09):
And that's the hard part is that's what a lot
of people worry about.
Speaker 5 (18:13):
It's like, what's going to happen when they had eighteen?
What's going to happen when I can't look after them anymore?
These are all the questions that you think about for
the future. And I know we have to think about that,
that lengths of time out.
Speaker 1 (18:28):
It's something most parents don't have to consider, but it
weighs very heavily on the minds of those who know
their children will always need help. In fact, it consumes them.
Speaker 2 (18:39):
It is something that is why the stress is so
much higher, I think, especially when you're parenting somebody with
higher needs.
Speaker 1 (18:46):
Asia Middleton is a behavior specialist at the Support service Explore.
She hears these kind of concerns every day from the
far no she works with. It's one she's grappled with herself.
Is the parent of a non speaking autistic child.
Speaker 2 (19:02):
Well, I apologize ahead of time if I have to
jump up my son's home from school, so he's going
to run occasionally run through. He might be loud. That's fine, okay, Sorry,
He's six foot three and one hundred and thirty kilos
at fifteen. So if you can imagine that kind of
(19:23):
running through your house, my whole house shapes. We live
in the country, so neighbors don't get afforded.
Speaker 1 (19:28):
But yeah, it's yeah, I know, that's all good. Aysia
is a real asset to the families she works with
because she's dealt with the same fears herself.
Speaker 2 (19:38):
This idea of will they be able to live independently?
Will they need support? But you have to think about
those things earlier. But you can get bogged down in
the oh my gosh, when I die, what is that
going to look like? And I think getting really strong
ties in your community, having people who know your child,
who understand. So we do have to kind of look
at our personal work out what makes them tick, how
(20:00):
do they work. And for the non verbal or the
minimally verbal, that can be quite tricky.
Speaker 3 (20:06):
You just don't know his emotion because he's not verbal.
Speaker 5 (20:08):
You have to read it right, and us as parents,
we need to understand it so that we can say, hey, Lot,
some friends starts looking after him Lot. If he doesn't
want to be around, he's going to do this right.
This tends to be the behavioral passion if he does,
this tends to be the behavioral pattern on the other side,
and you literally have to have an operating.
Speaker 1 (20:25):
Man Yeah you do. Yeah, he literally does have an
operating manual, as does Ayisha Coddington, although she calls hers
a cheat sheet. Getting regular breaks is vital, but the
work that goes into prepping the person who's giving you
the break is a job in itself. Asha says changes
to disability funding have made it even harder.
Speaker 2 (20:48):
They have become so hard to make things more difficult
for families because if you've got a high needs child,
that chances of you finding a respect person to come
in and work with your child, especially if there's a
language barrier or there's no language, is next to impossible.
It's hard enough to find a good teacher ade or
a good school at alone finding somebody, and we require
(21:10):
it because you know, just the mess or the things
you'd have to do in the morning, and lots of
those things becomes a really crawling job and everyone has
to work. Now you know how many people can stay
at home with their children and actually survive or be
able to pay bills. It's almost impossible. So, yeah, services biggest,
biggest failing.
Speaker 3 (21:29):
We have.
Speaker 1 (21:31):
When the services aren't there, the responsibility falls back on
the parents, and unless you're living it, it's hard to
comprehend the relentlessness of it all.
Speaker 5 (21:43):
Where like, moment Zac's up, I'm eyes on the price, right,
and if it's five five point thirty, fine, we're up right,
and that's it. So but from that five o'clock until
the moment he basically is sleep. If he's worth me,
it's eyes on the price. It's that's the difficult cruelty.
I think that most people understand, like just miss slightly,
(22:04):
whereas with a normal child, you're like, you don't have
to be fully onto it. Put the kids to bed,
they can look after themselves a little bit. It's a
lot more relaxing because there's not that uncertainty of like
what's going to happen. Those complexities mean you just you're on,
you're on, you're on, and you don't have that time
to go.
Speaker 1 (22:20):
I have talked to a lot of people about trauma
with parents PTSD, but you know, what you've been through
is quite can be quite traumatic.
Speaker 5 (22:28):
Some of it's very rewarding and you're like, you know,
learning a whole lot of stuff, and then other times
you want to sit in the shair and have a cry.
And so a lot of the times, you know when
I'm when I am, when you're just sitting there questioning
like is this ever going to happen? You know, like
you come home from school and they're like you know,
(22:48):
you've had the phone call and you've gone to pick
them up and they tell you about the incident, and
you're just like you know, and you're taking because you're like,
this is this isn't great? Like this is this has happened,
and it's but it all runs through, right, it all
runs through, and you need help, right, And my personality
traits have just started to try and problem solve. Yeah,
(23:11):
and then but the problem is with that is that
I've had many occasions, man, and I've I've gone down
rabbit holes, right, And you're sitting there on the computer
at two o'clock in the morning, You're like, the fuck
is a're looking at the first place, right, what's what's
what are we going to wake up to tomorrow?
Speaker 3 (23:24):
And what's going to happen there? But that's where it
starts to get on top of you.
Speaker 5 (23:28):
And I get to points where I just you just
because your brain is on and on and on and
on all the time. Right, And it's like I'm sitting here,
going what time do I need to leave to go
pick them up? It's good, right, half an hour, Ito's done.
It is just there's no time to just sit down
and be like decompress.
Speaker 3 (23:44):
Right.
Speaker 1 (23:44):
And and just the fact that the hyper vigilance all
the time, having to be on all the time isn't
great for your nervous system.
Speaker 3 (23:53):
I'm not going to hide it.
Speaker 5 (23:54):
Like the reason I go to the doctor is to
get medication to just help to be like, right, what
needs to be done?
Speaker 3 (24:00):
You've got to keep moving.
Speaker 1 (24:16):
Most of us take speaking for granted, but it's a
really complicated process, and if you have motor control or
sensory issues, it can be very difficult or impossible to
form words. An autistic person may not use words themselves,
but that doesn't mean they're not understanding the words other
people are using. Non speaking isn't non thinking or non feeling.
(24:39):
Yet we often act like these individuals are not even
in the room. Behavior specialist Ayesha knows this well.
Speaker 2 (24:47):
It's hard because people do talk about them. My son,
you know, will go to an appointment and I want
you to list all the negative things, and it's like,
I don't want to do that. He's in the room.
Why would I talk about him like that in front
of you? Don't understand that? So yeah, get people to understand.
I guess where that person's comprehension is what they can do.
The most disabling factor for all our guys is society. Unfortunately,
(25:11):
it's not really get up for us. It's not really
if we could just, you know, do this a bit better. Hi, Hi, Hey,
how are you?
Speaker 1 (25:27):
Five? Bag? In Cambridge? Eric's picked up Zach from school
and I finally get to meet him. What are you
guys doing?
Speaker 3 (25:35):
We had to stop one down here is run out of.
Speaker 1 (25:40):
Eric's helping Zach butter some toast too much? Ye Disney
movies playing. There's a bit of clanging and banging, a
regular after school situation. Done amazing. I I want to
see how it was. It's yeah, lamp is the communication
(26:03):
app on Zach's iPad. I'm really keen to give it
a go because in my head I'll be able to
have a chat.
Speaker 5 (26:09):
With should be right here, that's it, and then he'll
go eight a French fries.
Speaker 3 (26:23):
I wanted French fries and so the idea is that
it will be like go.
Speaker 1 (26:29):
It didn't occur to me that the communication device would
be something you had to learn. Zach does use it,
but it's not really designed for having a back and
forth conversation.
Speaker 3 (26:40):
Car It's quite complicate.
Speaker 1 (26:43):
It's not I mean, it's not straightforward, is it. But
there are other ways of communicating. Zax is keen to
take me to his room to see his artwork. And
Eric's right, his son is super creative.
Speaker 5 (26:55):
Trants you want to show you good ones doing lately,
we don't know what he's actually trying to do, but
he gets really once he's done it, he gets.
Speaker 3 (27:05):
Quite obsessed with you, not like or like only when
he's done it. But then after a while he's like.
Speaker 1 (27:12):
Life isn't easy. But the bond between this father and
son is strong.
Speaker 5 (27:17):
So we walk a lot, you know, down to the supermarket,
We do our routine.
Speaker 3 (27:21):
He knows the way, all.
Speaker 5 (27:22):
This sort of stuff for a bike ride. We do
all this sort of stuff where but you know, whatever,
this this fun stuff that we can do together, but
there's not there's a lot of people that are in
my position, you know, and that and that's the that's
the scary part for me because I sit there going Jesus,
how can we help?
Speaker 3 (27:37):
You know, what can I do to help?
Speaker 5 (27:39):
But I can't really do anything to help because I'm
full guess with Zach.
Speaker 3 (27:42):
And if Zach became a point where.
Speaker 5 (27:44):
They're like, actually he's let's say, and I've thought about it,
it's like worst case scenarios, schools like we can't have him.
Speaker 3 (27:49):
He's hell's a safety issue. Where does he go? I
have to change again?
Speaker 5 (27:57):
And it doesn't it's not a great change, which is
fine and if I had to do it, but I'm like,
how I'm going to bay my mortgage? Am I going
to need to adapt or as their you know, family
and other resources that can come in, or do I
have to make a change and incorporate Zach and that?
And That's a lot of what I've been thinking is
I'm being like, well, you know, he gets fully in
(28:19):
the renovation with me, right, He loved taking rubbish out.
Speaker 3 (28:24):
I give him the hammer. He will go what am
I going to do going forward?
Speaker 5 (28:27):
Like we do we get into landscaping or something, and
he comes part of it, you know, because he'll push
the wheelbear around. He likes carrying stuff, he likes seeing
things being created. So I'm like, is this how it's
going to be? You know, do I need to find
a block of land and we start becoming horticulture, right,
because he loves planting trees, So we're going to start
planting seeds and then grow them into trees and then
(28:50):
have to sell them, Like, is that what we're going
to have to do to earn an income? And in
the same time as we're doing that, and you do
some of that with him and then he gets some
care and some education, everything else carries on and through that, right,
but then that moves them because what I need to
look at is when it moves him into the future.
And we get to this eighteen where it's like child's
(29:11):
let school. Now, here's a few places they can go
for like you know, care and day things and stuff
like that, but there's not like, hey, we're just going
to keep them through an educational system and help you.
It falls back on you as a parent, and I
know that there's care and stuff, but we talk about
it and it's one of the things we're doing with
autism New Zealand and housing.
Speaker 3 (29:31):
As you get stuck in the poverty cycle, you get
to twenty twenty one.
Speaker 5 (29:35):
And problem is, now you are an adult, you really
can't work full time because of the stress on your
brain for no fault of your own, just your own
brain chemistry. You can't work around a whole lot of
people and half of the neurodiversent community. A're just like,
I want to work. I want to work, but I
can't go into this office. There's too much noise, too
many people. But I'm really good on the computer.
Speaker 1 (29:58):
And it's like, I'm so sorry about it, but very
unlucky to get through the interview process.
Speaker 5 (30:04):
Absolutely, the whole model is fucked. There surely is a
better way.
Speaker 1 (30:11):
He's got to be a better way. But it's about
quality of life. And I like just listening to you
talk about all your ideas and the options for Zach,
and it's big and it's grand. Yeah, but you know,
I'm just thinking your devotion is so I understand it's beautiful.
(30:35):
You would give up everything.
Speaker 5 (30:36):
I have accepted that Zach will have a very minimal
functional life in society, but I'm trying to make it
the best for him that possible. Right, There'll be people
that will listen to this and go, fuck yeah, same.
I don't know if our kid's ever going to get
to that point, or if they're going to do that,
and then there's other people going, well, I hope we do,
you know, and all that.
Speaker 3 (30:54):
Sort of stuff.
Speaker 5 (30:55):
Don't get me wrong, I'm trying to but the fact
that he doesn't communicate. We've tried for years and years years.
There's going to be a point in time where you're like, well,
I don't think you're even going to talk. So we've
done everything we can. Is it's going to be the
way it goes, and then you have to figure that
out as a family unit, as a support network, everything
around you, as a person, And that's where I'm at.
Speaker 1 (31:20):
In the meantime, he's focused on the gold, his twelve
year old son who loves a tickle.
Speaker 3 (31:28):
A tickle you. I'll get it.
Speaker 2 (31:31):
I'll get to speak, I'll get to speak. I'll get
it right Jack, you go say.
Speaker 1 (31:36):
Goodbye, say Zack, Oh, I got a kiss.
Speaker 2 (31:41):
See your buddy.
Speaker 1 (31:43):
It's so nice to meet you. You take care. If
you like this podcast, please rate and review it. It
helps people find it. No such thing as normal as
produced and presented by me Sonia Gray. Nathan King is
the editor. Owen O'Connor and Mitchell Hawks are executive producers.
Production assistant is Beck's War. The series is brought to
(32:06):
you by the New Zealand Herald and team uniform and
it's made with the support of New Zealand on air.
New episodes of No Such Thing as Normal are available
every Saturday wherever you get your podcasts.
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