My Own time and space | Love not Cure
S01 E03: The Ratbag Jeweler
UNEDITED Transcription
Pre Intro message:
Do you think being autistic will limit one’s ability to be successful in doing what he or she wants?
Intro:
This is Lloyd I AM and you are listening to Takiwātanga, love not cure, exploring autism one strength at a time.
Intro message…
Hi everyone, Thank you for listening, this is our 3rd episode for this podcast. Happy to be here again. This our third and we’re making good progress here!
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Good day to everyone listening and in case you are in a different timezone, good evening. In this episode I will share another interview I made with Tina and Mackenzie. This interview was done from Taupo. Tina’s son Mackenzie was assessed with aspergers and their story is inspirational and amazing. I am fascinated as always whenever I meet someone who they said has a disability and in this case aspergers, which is under the autism spectrum. Others may view this as a disability but I believe that if someone, regardless of condition, focuses on strength rather than weakness, they can achieve greatness.. Without taking much of your time, here is Tina and Mackenzie.
Intro to Tina and Mac here…Without further ado, here the story of Tina and the Ratbag Jeweler.
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I would like to introduce you here with me is Mack and Tina.
Lloyd: Hello Tina; Tina: Hello.
Lloyd: Mack?
Lloyd: So how are you doing?
Mack: Oh, pretty good.
Yeah. How’s it going on?
Beautiful. A beautiful day!
Tina: Nice to meet you.
Lloyd: And I appreciate your time.
Tina: It’s a pleasure.
My pleasure. Whatever we can do to support.
Lloyd: Tell us about your story about Mack.
Tina: We come from the U.K. We’ve been in New Zealand now for 18 years. Mackie was four and a half when we came here. Just a very active little boy.
He’s got an older sister, Kelly. And we started having difficulty in his beginning school years with just socialization.
And little things would creep in where he wasn’t mixing like he should do. Would you say that Mack?
Mack: Yeah, I mean, not meshing.
Tina: the contact that you would normally make, he was a little bit delayed in his speech.
But we just thought that was delay, you know, a boy and he was just being probably a bit lazy and huge frustration, like when we’d teach him in the
the alphabet, he’d get really fed up and say, I’m sick of it. And that for me now I’ve digested it because I think their speech is slow.
They have a job to converse. Then often they’re thought of as being probably delayed, but they’re not they’re actually advanced.
There’s a huge frustration in the way people react with them. He was very, he could read a teacher before they understood him, pick up
on that unspoken cues so he knew what they were thinking. It’s been a long journey. We have had to fight hard. We don’t like to say it’s a disability
because they’re different, but it’s almost an unseen disability. And I used to hate saying this, but if they were in a wheelchair,
they would get immediate help because these children have a difficulty in school and a difficulty with processing.
They can’t access help easily, not when we were in school anyway. So we used to have to fight, you know, fight very hard for
help within the school because it’s very hard for a teacher with 25, 30 children to give them the individualized care that they need.
I think the classroom set up wasn’t good for them because they don’t like bright lights and the noise affects them.
And, you know, they get bored quickly. They get to keep them on task was difficult. So we had a job to keep Mack in school
for long periods in the day would often get sent home or once he was stood down because they had a school inspection,
you know, all this sort of stuff was going on, which was. Yeah, comments like, you know, when he was little, how did
you get in, in a normal school? We have been lucky in the fact that we’ve I fought hard for working quite vocally.
I have a nursing background, so I’m not scared to stand up and, you know, fight for, it’s almost like to help people.
And he was our son. And it was “What we’re gonna do?” We’re going to sit down and just let him fall through the slats or are we going
to fight hard and get the help he needs? So we’ve met a lot of lovely people on the way. And it’s and you don’t want to label
for these children, but without the label, it’s a bit like the chicken and the egg. You can’t get the specialised help they
need and met some amazing individuals that have helped him. His one-to-ones have been incredible. You know, if you get the right people
and the right teachers, these kids can just reach for the stars. Yeah. So we’ve had, he’s had some amazing one-to-ones, and without them
we wouldn’t have, I wouldn’t have made it, you know, Mack wouldn’t have got through. A couple of really good teachers that have
been behind him. You know, if they’re behind these kids and they understand them, then they have more opportunity,
you know, more help, more understanding. And I think the more they are accepted and relaxed they feel in their environment, the more they try.
So more of like someone is behind them back supporting them in all aspects. Yeah. How do we set the classroom up?
I mean, we had a wonderful headmaster that when he went to intermediate, gave Mack his office until he was brave
enough to come and be with the classroom. And he was Headmaster Māori headmaster who said Mack walks to the beat of his own drum.
And as long as he’s walking to the beat of it meaning, as long as he’s allowed to be who he is, we have no problems.
It’s when they’re treated as different. You have the problem. How is Mack in terms of growing up at home, like
how is the support from family? Relatives? What would you say Mack? They’ve been like supporting me, like nonstop, like…
Your sister is your biggest advocate? Yeah, I mean, all of my life, basically, just giving me that support really helped me.
You know, there were times that I was just like sad that I didn’t really get along with my peers and all that sort of stuff like
there have been emotional times in my life. I mean, of course, there will be people like me. Um, you’ve got there. I got there.
I got there in the end. I mean, look at me now. I mean, I’m alive. Kelly is 28. She’s a trained nurse now and she is his
biggest critic, you know, very tough on him, but for the right reasons. She wants him to be as independent in his life as he can.
I think as a parent, as a mum, you tend to be very, you cushion them, you’re very protective,
where as Kelly’s got that nice balance and the fact that, hey, mom, he’s got to be set up for life when I’m when we’re not here.
A lot of questions and worries, concerns like parents like us and what’s going to happen next and all those things.
And I saw this video. It’s a touching video like this parent is so worried about what’s going to happen to her son.
She don’t want to put all the responsibilities to the siblings. Yes. Because it’s not… That’s huge. Yeah,
I think that’s the biggest thing for Kelly is that because there’s only the two of them are more small unit because
we have emigrated to New Zealand. Yes, we’ve got friends, but it’s not family. What will be will be. And I think as long as you
they get the support and the love and you give them as much information and set them up as well as you can, I think you have
to believe that they’re pretty smart. They’re pretty smart kids, Mack’s pretty on to it. And I know that he would be fine.
You know, I think he’ll, he’s doing really, really well. So I think it’s finding the right support, having the belief.
I truly believe these children are here for a reason. You know, they bring change. They are non-judgmental. They accept people, which is I wish it would be reciprocal
for who they are, you know, and I think that is how humanity should be spot on… And to look for their strengths. We’re so busy worrying about what
they can’t do instead of seeing them for who they are. I follow Sue Larkey She’s in Australia and she says, look for their… What do they enjoy?
What are their positives? And that’s the direction they will go celebrate their strengths, not their weaknesses.
We look for always in special needs. What’s wrong with them? You know, always what’s wrong? What’s wrong, what are they not doing?
But how about, hey, look what they can do, you know, they think outside of the square, you know, and he did acting.
The one good thing he did acting and acting, I think, allows these children to be somebody else.
And if you look at a lot of actors are on the spectrum, a lot of them are in Hollywood as well.
I was doing a research. I was looking for like an example. So at least when time comes, I will be able to show my kids as well.
So at least they can accept one another. And like, hey, look, this man is from Hollywood, let’s say,
and he’s so successful with his work, we are all different. But I think we can all do the same success that they have done.
We worry as parents, but I think we should speak proud and loud about these children, fight their corner, try and change public opinion.
Humanity is got to come through. You know, we’ve got to start caring about one another. We’ve got to accept one another.
And I think success is not always about achievement in education or jobs. I think it’s about how you treat other people, you know?
Yeah, I think the world has got to change. I think these children will change the world. There’s more of them.
If you look it doesn’t look as if it’s genetic. There’s too many of them. And there is one psychologist that said,
I believe this is the next wave or evolution. You know, people changing. Yeah, I agree with that. Yeah.
As we were talking about, I love successful people. Are we know them. I mean, like they’re always on camera
and then we wouldn’t know that they are on the spectrum. But yeah. And in my opinion about the spectrum,
we are all in the spectrum actually. We are. Yeah we are. Yeah. We just like fancy, of like separating ourselves from others,
which I think there’s a problem with that, because when we tend to separate us, We tend to divide ourselves
like we should be working together. We should. I think media, the way I, I worry about children, they’ve
all got to look a certain way. They’ve all got to dress, you know, where’s the difference?
Where’s the individuality? We’ve all got to look like this and we’ve all got to have the same hairdo and labels
and what a boring world, what a boring world, you know, where are all the individuals that bring about excitement and change.
And, yeah, I think that’s where our children said, “Hey, what is important in our life?” You know what is important?
And I think that was a huge. Mack loved locked down And we’re all together as a family, you know, and this brought about the business.
So it was an amazing time for us, you know. Yeah. And then we met Sarah and it was like we were off. But it was lovely because it gave Mack
a platform to say and we asked his permission because we don’t want to say, we don’t want to give him a label. But if he can help one parent, just one.
OK, then to me, you can’t buy that. That’s a huge difference. So that’s one of the reasons why me and my wife is also putting this up as well.
If we can get even just the tiniest information out of an experience parent parent like you and give that person (referring to another parent) an idea as well.
And it worked. Yeah, I think that will make a huge difference for that parent and family. I think we’ve got to, you know,
start and realize that we’re all different and we need to be kind to one another, especially people who are different, we call different.
I mean, they would say that we’re different. You know, who’s who’s normal. I’d have to say who is the normal one?
We say that Mack is the most normal enough on that, you know, he’s got it together Mack looked as long as.
Lloyd: When I was talking with my wife and then and we were talking about my son, my youngest, we went to a GP and the GP,
or it also gave us an information that he might be in a spectrum. The GP did mention that the spectrum, the normal spectrum is kind of wide and very wide.
I told my wife, what’s normal? I mean, I didn’t, I never signed up for for a criteria of a normal person. And then when you gave birth, no one from the nurse unit
asked me to sign like this should be the normal behavior.
Tina: That’s my concern. I mean, like we keep on labeling on what’s normal and what’s not. Because it’s bad enough being told if your
child is different, it’s even worse when you’ve got to go to these people and shout screaming to get what you want. It’s like, are you really going to put me through that?
So then you have, they’ve got to have a label, which you don’t want to give them a label, but you can’t get the help without the label.
Then you have group special education who work separately. Then you have your RTLBs [Resource Teachers: Learning and Behaviour] who work separately.
They don’t work together. They’re all in separate units. They all do their own thing. Then you want to fight for one-to-ones, you know, for the help.
But they’re limited with funding. You can’t have them constantly. You can’t build up a rapport with them. Then you go through, they’re put through
mental health, which I think is not where they sit. And you go down there, we’re going to medicate this child route,
which I fought very, very hard not to do. And we have, Mack’s not on any medication. Helps to a certain extent.
But we’re medicating these children to fit in with the other children unless there is a reason. And there’s is a lot of discussion.
It’s very open to opinion. But we didn’t want to go that route. So it’s very fragmented. I got frustrated because the system is fragmented.
They gave us six different psychiatrists. And I remember standing there from Lake Taupo on a boat to the hospital screaming at the top of my voice.
Because there’s no continuity of care, I don’t see how, you know, we keep getting different people. You want continuity of care.
You want somebody who can follow the plan through and know the child without having to keep repeating
numerous times about their history until you could scream. You know, there’s only so many times you can repeat that.
There’s an amazing psychiatrist from Hamilton, Mike Goodex, who was fantastic. He put Mack on melatonin, which helped him to sleep.
And once he was sleeping, his behaviour just improved and improved and improved.
He was on that time on a very mild anti-depressant just to calm him. But actually, he wasn’t on it for very long.
And once he was in that sleeping pattern, we had continuity with the psychiatrist. We had some amazing one-to-ones
We hit speed bumps occasionally, didn’t we, Mack? But on the whole, he got his level 2 NCEA by hook or by crook.
He got it, which was like that was huge. But then when we hit a bump where he didn’t want to stay at school,
he could have stayed on an extra year, but he didn’t want to be different and be the the child that was held back.
So I met a psychiatrist, another one from UK that came. He was a specialist in ADHD. He said these children are late developers, they often,
he said, don’t push them through the schooling unit, they often go to university and find they’re like minded people at 26 and 27
let them travel, let them experience life. Don’t worry, they, we see boxes. They see circles. I think we all are different in one way or another on how we see things,
I mean, I don’t know why we’re putting labels on. Yeah. I mean, yeah it’s hard.
It’s hard. You don’t want it because it hurts. It’s like a knife you know. Like stabbing your chest…
And we think what have we done wrong? What did we do wrong? You didn’t do anything wrong. Nothing.
I think children of difference are meant to be here, we can’t all be the same. And I think it teaches us to be human,
to be kind, they’re here for a reason. Everything happens for a reason. It does. And our journey’s been like that.
And even this business where people get in touch with us because Mack has given hope and we get amazing stories back, he’s given away more rings that he’s made
it’s the feedback. It’s an amazing journey for us that we never thought we’d have. It’s a future for Mack that he never
really believed he could have. And I think he can take it in whatever direction he wants. Tell me about this business that you have Mack. Grand dad came.
I mean, the idea came to me a while ago. I thought, I was wondering what I could do for the business.
And also if I can make my [own] business and I thought, OK. Grand dad came, didn’t he? Yeah grand dad came a couple like, how many years ago?
Grand dad came three years ago. And what does he do? He is a gunsmith, and an engineer. So I was thin king.
OK, since my family has a long history of blacksmithing and all that sort of stuff. What could I do? And I thought, you know what I want to make rings.
I mean, I want to make something like do something. And this is where I’m making these. So grand dad is a gunsmith.
So they came up with, well, we’ve got lots of bullets and got shells. Kelly, the daughter bought a bullet ring
a long time ago and has worn and worn it. And so between Kelly, grand dad, who’s got the aptitude for silversmithing. To give and handed it down to Mackenzie.
They’re in a tiny garage, bless them both. Dad’s got a big CNC lathe Very clever, 81, amazing mind, wonderful grand dad, and has passed on this art.
And to Mack, who is into heritage. Wow! It clicked. You know, you’ve got to have something that clicks their imagination.
And his ancestry, his big into ancestry. And we’ve turned it back about 1500s. And it’s blacksmiths, silversmiths, blacksmiths, you know, like that all the way through.
So it fits. It fits in their DNA. To watch an 81 year-old white strict grand dad. And I call him Aspie. You know,
Arty [artist], it can be interesting, but they between them. This is what they’ve done.
And Kelly’s an arty, even though she’s a nurse, creative. So she’s running the Facebook and Instagram for she is quick,
you know, where as Mark is not into that. He’ll do the rings, but she deals with that side. So how long can you make one ring
It takes a little while. Is there a good, good day? There’s a lot of process to the little ring. Yeah, and then during the coins as well. So it depends.
That’s a Tiki coin. So we’re getting a lot of, he’s getting a lot of people are sending special coins. So the stories with the coins.
So we’re interested with these coins that, you know, he’s got to cherish and work with. But the stories are amazing behind the coins.
And they can take him a bit longer, because they’re direct, they want what they want, they won’t focus on anything else,
and he can’t tell lies, you know. I said because their brains are wired differently, it’s not that they’re mean to offend.
I said, look at it as he’s from the moon. You’re from Earth. You don’t speak the same language. You’ve got to find a way to connect.
And it’s the special skills connecting. Like a universal language type of thing. They’re amazing because they grow to understand the world, not the world, understand them.
So it’s like having your two languages, you know, they’ve got to understand. And a lot of them won’t pick up facial expressions.
They don’t see. They don’t pick up that. We were lucky with Mack he does, but a lot of them don’t.
So it’s hard for them because facial expressions are a big part of communication and that’s where they struggle.
And they’re very direct so that we’ve upset a few people. We’ve had a few skirmishes with adults. You know, when he was little there would be woof.
It’s awareness I think autism New Zealand are doing a good job. But I think the education system is fragmented. I think they say they’ve not got funds.
But to me, I think groups specially RTLB they should all be under one roof, there shouldn’t be the separate groups.
You shouldn’t have to keep going to all these different places. It frustrates me because I think New Zealand is very small.
I think it could be more centralized. I think they could pull together and use their resources to better effect. I think it’s a bit that says, that says,
you know, where as that doesn’t work. So that could be something that needs to be driven.
Yeah, but there’s something I’d like to tell you. There is this myth of Pandora’s box. When she opened that box, all this bad stuff came out.
But there was one little tiny thing that was left inside, and that was HOPE. That was the last bit of mystery there.
because when I make these rings, they are not just a ring there’s just a piece of hope that I can give to people.
I’ve learned throughout my life that I can block that out. And so I’ve been, I know what the effect of bullying is, and I’ve been bullied multiple times.
But the one thing that I’ve learned is that I don’t have to take that And now. And now I’m here.
I mean, you’re getting there aren’t you. Yeah, I’m here. Maybe just for a final information. Do you have any advice?
They’re all different, that’s the problem. They’re like shifting sands. There’s not one of them the same.
And that is the problem, I suppose, for the care they get the help they get. Tony Atwood in Australia is amazing.
He’s our, probably, Australasian specialist for Asperger’s. You know get his book.
Do your own research and study. You have to put a bit of effort in. Because you don’t expect help.
You have to fight for help. That’s why I wish the system was different.
But I think at the end of the day, we get very worked up and we tend to blame ourselves.
I would just say, drink a glass of wine BREATHE. And, you know, they’re special kids, always look for the positive.
When somebody, I’m a bit quite straight with them. You know, these kids, I think it’s a human right for an education.
It’s their right as a human being for an education so you try hard. Yeah, I used to watch the Health
and Disability Act to whoever you know. And if you don’t believe in what the specialist says or…
You question them, you go with your gut feeling. But I would look, I would very much look at diet
with what they eat because there’s a lot of work going on inflamation at the moment.
And they’ve got microbia That’s the route I’m going. I’m a nurse, come out of natural health
and how it affects the brain. So any help I can give you with that I’m more than
happy. And yeah, get early intervention. It’s proven. Is it Grandin the woman who invented the cattle crush
Early intervention works, so the more help you can get early on the better and technology help Mack.
He couldn’t write. But as soon as they gave him an iPad. He was off, opened his world up.
So the melatonin, plus the iPad was the avenue, the gateway.
Plus the wonderful, wonderful one-to-ones. And I can’t thank [enough]. I could have had a million dollars.
It wouldn’t be enough, you know. Yeah. Find people who will fight your corner
with you and don’t beat yourself up. “It hurts. It hurts. It really, I failed.” You know, don’t.
He is, you know what? I would never be without him. He’s just, he teaches every day of our life.
He teaches us something not the other way around. I think our children are here to teach us, not the other way around.
He said he picked us from up there. They picked special parents. So you must be special. Yeah. So think of you and your wife as special. Yeah.
Because and that sounds a bit crass, but I think you only given as much as you can handle in life
and you’re given it for a reason. And you I think will take that baton and run with it. You know, you’ve got the technology run with it.
And see if with him, no sugar if you can, because sugar is inflammatory. So we’re finding out that, you know,
I know this and it’s hard when they’re little, but as they get older, sugar is very inflamatory to their system and inflamation
affects the brain. So you do your research. There’s a GP here in Taupo, Dr Glen Davis. That is how it’s going on for… A lot
of his type two diabetics are on keto diet. And he’s, ninety of them he’s reversed it.
Now, also, the other person is Terry over a Miss America and they’re looking at when they did this.
Then they’re finding it helps for other things and a little bit of the ADHD. and Mack sit on that inflammatory response.
So that’s why he’s been two weeks off gluten and sugar. And we had an episode two weeks
ago where he had huge anxiety. He had a tingling numbness. He said his memory was going fuzzy
and but he’d been bingeing on bread, carbs. And I felt bad, but we’ve had enough of that, and he’s
not the same person two weeks later. So this huge amount and I don’t think there’s enough said about dietry
that is huge amount I think is going to be the next like the microbia. And they look at that because when we gave
him antibiotics, he would come right, because it killed off the bad bacteria. But then a week later, it would
come back and I’d lose him again. He would disappear. You know, he’d be back into his little shell.
So it’s huge. Yeah, look at gut microbia. So that would be my advice.
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I hope you have enjoyed the discussion and learned a thing or two.
I remember during the time I first showed that video interview to someone I was called out because I said that we are all on the spectrum. Don’t get me wrong I mean no harm to anyone’s feelings nor try to discredit the challenges that people with autism are having. Please don’t get me wrong, there are a lot of things that I believe and one of them is knowing that we are all on this journey together. When I said we are all on the spectrum, there is only one spectrum that I am aware of, I call it the human spectrum… We are all human beings and all we want is for everyone to achieve their goals and supporting each other will help us go further. This is a no judgment podcast, let’s all just be human beings here.
How about you? What did you like about this episode? Comment down below if there is a space to do so… other than that, feel free to discuss it with your families and friends. This term is worth sharing as well.
For our next episode, I will talk about the things me and my wife are looking into and what ideas we can leverage that may be used as parents. Stay tuned!
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Every autistic person is different and there are tons of strategies out there that we can try and explore. If you fail with one strategy, don’t feel bad, always remember that every failure is one step closer to finding out the one that will work for you.
Thanks for tuning in, I hope you enjoyed the show, until next time…
Me mutu te Whakawa Haere, Let’s stop judging others
Me Mahi Tahi Tatou, Let’s all work together,
Kia Maia – Kia Kaha, Be brave and Be strong
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