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