Just a note, this episode does contain explicit language.

Just a note, this episode does contain explicit language.

Oh would you like a glass of wine?

Oh would you like a glass of wine?

It's a sunny Sunday afternoon and I've rocked up to a get together in East Auckland at the beautiful home of Natalia and Peter Parsons.

It's a sunny Sunday afternoon and I've rocked up to a get together in East Auckland at the beautiful home of Natalia and Peter Parsons.

We're just having a little bit of a mum's ketchup out here.

We're just having a little bit of a mum's ketchup out here.

The mums are so lovely, but it's actually their partners. I'm here to see. This is a dad's support group which Peter started for fathers of high needs kids on the autism spectrum. But the guys have gone for a walk in the nearby bush. It's what they call chicken time, where they can talk confidentially about whatever's on their mind. Peter's wife, Natalia says that for many of them, this group is a place of refuge.

The mums are so lovely, but it's actually their partners. I'm here to see. This is a dad's support group which Peter started for fathers of high needs kids on the autism spectrum. But the guys have gone for a walk in the nearby bush. It's what they call chicken time, where they can talk confidentially about whatever's on their mind. Peter's wife, Natalia says that for many of them, this group is a place of refuge.

That's is Jordan, and you can see that they love being here and having a beer and catching up and just being noticed. And it really broke my heart to hear that some of the dads say that I have friends, that it's hard to have friends, and it's hard to have friends. Are understand being a special need parent is so hardened so many, so many ways. But there are glimps of happiness in our lives that we just have to grab and hold on to otherwise we stop living. And what's the point, you.

That's is Jordan, and you can see that they love being here and having a beer and catching up and just being noticed. And it really broke my heart to hear that some of the dads say that I have friends, that it's hard to have friends, and it's hard to have friends. Are understand being a special need parent is so hardened so many, so many ways. But there are glimps of happiness in our lives that we just have to grab and hold on to otherwise we stop living. And what's the point, you.

Know, Kioda. I'm Sonia Gray and this is no such thing as normal theories too. I am diving into the complex and 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 the 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. This is the first of two episodes focusing on parenting and neurodivergent child parenting. Yes, of course it's rewarding, but it's tough, and when your child is wired differently, the tough bit gets multiplied. The challenges are layered and they are numerous. What these parents need most of all is understanding and support. In these episodes, you'll hear from a range of parents who are on this road. It's a road with no roadmap. They all agree this experience changes you profoundly. There are great unexpected rewards, but it is a PhD in parenting.

Know, Kioda. I'm Sonia Gray and this is no such thing as normal theories too. I am diving into the complex and 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 the 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. This is the first of two episodes focusing on parenting and neurodivergent child parenting. Yes, of course it's rewarding, but it's tough, and when your child is wired differently, the tough bit gets multiplied. The challenges are layered and they are numerous. What these parents need most of all is understanding and support. In these episodes, you'll hear from a range of parents who are on this road. It's a road with no roadmap. They all agree this experience changes you profoundly. There are great unexpected rewards, but it is a PhD in parenting.

I've got family, I've got close friends, We've got a village, you know, friends that are always willing to help out, but at the end of the day, they will never fully understand how tough it can be.

I've got family, I've got close friends, We've got a village, you know, friends that are always willing to help out, but at the end of the day, they will never fully understand how tough it can be.

It's Peter. He started this support group two years ago with a simple post on Facebook, and it's grown into something quite beautiful. The guys here come from vastly different backgrounds and walks of life, but they see each other. It's far though. The idea came when Peter stumbled upon similar groups online but they were based overseas.

It's Peter. He started this support group two years ago with a simple post on Facebook, and it's grown into something quite beautiful. The guys here come from vastly different backgrounds and walks of life, but they see each other. It's far though. The idea came when Peter stumbled upon similar groups online but they were based overseas.

Just seeing the conversations that were being had with these dads on these other platforms, I thought, man, we need that, you know, we need a space, like a safe space for dad to be able to just to chat and talk about the struggles, you know, the small victories that to anyone else would be like, oh, that's nothing, but twice it's like, man, my boy said, it's first word. It's that sort of thing. So when I put a post up there two years ago, I was blown away by the response, like hundreds of messages, but it was mostly from the mums, the partners. The thing with Dad's is like we struggled to open up and share. You know, it's always been a battle in society for us. And all these guys, like every one of them have turned up, they've all said the same thing. It was so hard for them to come to the first visit. But then once they're here and they see you know, what we're doing and what we're sharing, what we're talking about, They're like, man, these guys are all on the same journey.

Just seeing the conversations that were being had with these dads on these other platforms, I thought, man, we need that, you know, we need a space, like a safe space for dad to be able to just to chat and talk about the struggles, you know, the small victories that to anyone else would be like, oh, that's nothing, but twice it's like, man, my boy said, it's first word. It's that sort of thing. So when I put a post up there two years ago, I was blown away by the response, like hundreds of messages, but it was mostly from the mums, the partners. The thing with Dad's is like we struggled to open up and share. You know, it's always been a battle in society for us. And all these guys, like every one of them have turned up, they've all said the same thing. It was so hard for them to come to the first visit. But then once they're here and they see you know, what we're doing and what we're sharing, what we're talking about, They're like, man, these guys are all on the same journey.

Yeah, totally. It's so hard to find people that understand because unless you're living it, you can't quite comprehend. It's not just the day to day stuff. It's the worrying about the future, it's grief, It's all these things so true.

Yeah, totally. It's so hard to find people that understand because unless you're living it, you can't quite comprehend. It's not just the day to day stuff. It's the worrying about the future, it's grief, It's all these things so true.

That's so true.

That's so true.

Peter's son, Jordan, is eleven. He's a sweet and gentle kid. Jordan is autistic with global developmental delay, and he's nonverbal. My daughter's challenges are very, very different, and I can't even pretend to compare them to this situation. But Peter and I both understand the grieving process and the pain of knowing your kid will struggle in the world, and we talk about the initial denial.

Peter's son, Jordan, is eleven. He's a sweet and gentle kid. Jordan is autistic with global developmental delay, and he's nonverbal. My daughter's challenges are very, very different, and I can't even pretend to compare them to this situation. But Peter and I both understand the grieving process and the pain of knowing your kid will struggle in the world, and we talk about the initial denial.

The first few years were probably harder and seeing people say, oh, you know, I wouldn't change my boy. You know, he's find the way he is and I'm like, hell no, this is how can you be happy with the fact that your child is non viable? But like you said, as the years have gone by and Jordan's grown up, and it's like, man, he is an amazing kid.

The first few years were probably harder and seeing people say, oh, you know, I wouldn't change my boy. You know, he's find the way he is and I'm like, hell no, this is how can you be happy with the fact that your child is non viable? But like you said, as the years have gone by and Jordan's grown up, and it's like, man, he is an amazing kid.

You know, he's got a harder goal.

You know, he's got a harder goal.

He's taught me so much around empathy and because of him, you know, I've got to meet all these great guys and you know, just created this whole new community, you know, whereas if we weren't going down this road, you know, we wouldn't be doing any of this. You know, we wouldn't be meeting all these families and trying to help each other.

He's taught me so much around empathy and because of him, you know, I've got to meet all these great guys and you know, just created this whole new community, you know, whereas if we weren't going down this road, you know, we wouldn't be doing any of this. You know, we wouldn't be meeting all these families and trying to help each other.

Yeah, it's it's hard and it's humbling, but it's it's kind of real ay, and you know there will be many other people getting together on a Sunday afternoon around the country. But when you come to somewhere like this, it's like you can't pretend everything sweet, you know, so this dad goes straight away, all the pretense goes, which is I think beautiful.

Yeah, it's it's hard and it's humbling, but it's it's kind of real ay, and you know there will be many other people getting together on a Sunday afternoon around the country. But when you come to somewhere like this, it's like you can't pretend everything sweet, you know, so this dad goes straight away, all the pretense goes, which is I think beautiful.

It is it absolutely is It absolutely is like like we went for our walk and we had a little catch up. You know, the dads were just sharing the battles you go through and always straight into it.

It is it absolutely is It absolutely is like like we went for our walk and we had a little catch up. You know, the dads were just sharing the battles you go through and always straight into it.

You know.

You know.

There was no surface talk or you know, just dad's being vulnerable, being honest, just you know, sharing each other. Well, this is what I did. You know, when my son is going through their struggles and it's great to hear the encouragement as well. It gives them hope.

There was no surface talk or you know, just dad's being vulnerable, being honest, just you know, sharing each other. Well, this is what I did. You know, when my son is going through their struggles and it's great to hear the encouragement as well. It gives them hope.

When my son was first diagnosed, we had no idea what autism wants.

When my son was first diagnosed, we had no idea what autism wants.

That's Mac Ponneu, another dad in this group. His five year old son Matthias, is autistic.

That's Mac Ponneu, another dad in this group. His five year old son Matthias, is autistic.

So it was a lot to deal with at the time. Like we were told that if we don't get a diagnose, we won't get any supports, Like that's the doorway to getting you know, supports around him. I said to my wife, well, what do we do now. You know, when you become a first time parent, you have all these ideas. I want to play basketball with him, I want to throw the ball with him. You make up all these plans in your head and then you get thrown in the deep. All those dreams just gone out the window. It feel like you have to start all over again. I needed a couple of weeks just to circ all that and just to take everything in. And after that two weeks, I had to step back from a lot of things I was doing for work to focus on my boy. And I knew that that will be the best way forward for us. And when we couldn't get any answers or not even a response from the ministry, and couldn't get any of those supports, we had to go and create those opportunities ourselves.

So it was a lot to deal with at the time. Like we were told that if we don't get a diagnose, we won't get any supports, Like that's the doorway to getting you know, supports around him. I said to my wife, well, what do we do now. You know, when you become a first time parent, you have all these ideas. I want to play basketball with him, I want to throw the ball with him. You make up all these plans in your head and then you get thrown in the deep. All those dreams just gone out the window. It feel like you have to start all over again. I needed a couple of weeks just to circ all that and just to take everything in. And after that two weeks, I had to step back from a lot of things I was doing for work to focus on my boy. And I knew that that will be the best way forward for us. And when we couldn't get any answers or not even a response from the ministry, and couldn't get any of those supports, we had to go and create those opportunities ourselves.

It's definitely come up families sharing with me a lack of trust in the system.

It's definitely come up families sharing with me a lack of trust in the system.

Willow Sainsbury is an educational psychologist. I got in touch with her after reading a research paper she'd done on the experiences of parents with autistic or ADHD kids. But she tells me this was a second study. It came about almost by accident.

Willow Sainsbury is an educational psychologist. I got in touch with her after reading a research paper she'd done on the experiences of parents with autistic or ADHD kids. But she tells me this was a second study. It came about almost by accident.

So I started looking at cooccurrence and my first research project was very quantitative, so very mathematical. I was looking at exactly age diagnosis and how much later it was. But at the end of that very quantitative, mathematical study, I asked three questions and I never expected to get the response that I did. And my three questions were, what was helpful about the diagnosis process, what was unhelpful about the diagnosis process? And what would you like researchers to know?

So I started looking at cooccurrence and my first research project was very quantitative, so very mathematical. I was looking at exactly age diagnosis and how much later it was. But at the end of that very quantitative, mathematical study, I asked three questions and I never expected to get the response that I did. And my three questions were, what was helpful about the diagnosis process, what was unhelpful about the diagnosis process? And what would you like researchers to know?

Good questions?

Good questions?

Thank you? What were the answers?

Thank you? What were the answers?

Well, the answers were pages and pages of writing, and they were the last questions in my survey. And I don't know if you've ever had to do one of these surveys, but sometimes you can get really tired by the end and you just want to get it done. So I was really impressed and heartened and also humbled by how much parents had taken the time to write. And because of that, I thought, right, this has to be published as well, have to get these voices of these parents out as well. So strange enough, it was almost an incidental study. I had ethics approval to us these questions, but I wasn't necessarily expecting an entire research paper to come from these three questions. But it was because of what parents had taken the time to write. Well for starters, the question that what was helpful actually strange enough, many parents had written nothing at all. But then, of course what they said was unhelpful was heartbreaking. I must submit that I would occasionally break to go have a glass of wine and approach it the next day, because some of them did bring me to tears pages that they had written about the journeys that they had been on with their child and just the and the wait times and how heartbreaking their journeys had been, and how long the journeys had been, and also there wasn't a lot of resolution that now things were all good. Number of parents are just started with swear words as well, the system is can we surround this podcast, you can swear that the system is fucked, the system is broken, the system is shit. So and then would start to explain why I did occasionally get some of them writing their stories and there was a natural resolution and that they'd said that they're now their child is thriving, but a lot of them said, and my child continues to suffer in the system.

Well, the answers were pages and pages of writing, and they were the last questions in my survey. And I don't know if you've ever had to do one of these surveys, but sometimes you can get really tired by the end and you just want to get it done. So I was really impressed and heartened and also humbled by how much parents had taken the time to write. And because of that, I thought, right, this has to be published as well, have to get these voices of these parents out as well. So strange enough, it was almost an incidental study. I had ethics approval to us these questions, but I wasn't necessarily expecting an entire research paper to come from these three questions. But it was because of what parents had taken the time to write. Well for starters, the question that what was helpful actually strange enough, many parents had written nothing at all. But then, of course what they said was unhelpful was heartbreaking. I must submit that I would occasionally break to go have a glass of wine and approach it the next day, because some of them did bring me to tears pages that they had written about the journeys that they had been on with their child and just the and the wait times and how heartbreaking their journeys had been, and how long the journeys had been, and also there wasn't a lot of resolution that now things were all good. Number of parents are just started with swear words as well, the system is can we surround this podcast, you can swear that the system is fucked, the system is broken, the system is shit. So and then would start to explain why I did occasionally get some of them writing their stories and there was a natural resolution and that they'd said that they're now their child is thriving, but a lot of them said, and my child continues to suffer in the system.

Mac member of the Dad's Autism group, agrees that the supports just aren't there.

Mac member of the Dad's Autism group, agrees that the supports just aren't there.

You go to get a diagnosis and then you basically just get dumb in the system. You go out and find things out yourself.

You go to get a diagnosis and then you basically just get dumb in the system. You go out and find things out yourself.

And other parents apparent resources.

And other parents apparent resources.

Exactly, you shouldn't you shouldn't feel like that you shouldn't have to rely on other parents to get more information. This is why a lot of parents fall through the cracks because the lack of support and lack of understanding, and just lack of people having the empathy and also the time to actually fully understand. So most families go through diagnosis and ins like that's all we could do for now, and then when we ask for services, you have to make more appointments, which is quite overwhelming for families just to go and do one appointment to get to the appointment, yeah, just to.

Exactly, you shouldn't you shouldn't feel like that you shouldn't have to rely on other parents to get more information. This is why a lot of parents fall through the cracks because the lack of support and lack of understanding, and just lack of people having the empathy and also the time to actually fully understand. So most families go through diagnosis and ins like that's all we could do for now, and then when we ask for services, you have to make more appointments, which is quite overwhelming for families just to go and do one appointment to get to the appointment, yeah, just to.

Get there, and then you have such high hopes with each appointment. This is the thing, and then they just dismiss you, or they're not listening to you, or they're like, oh, let's see how it goes.

Get there, and then you have such high hopes with each appointment. This is the thing, and then they just dismiss you, or they're not listening to you, or they're like, oh, let's see how it goes.

We got told next time, don't bring your shopping list. My wife and I wanted to understand what is out there, what is available, what do we need to do next?

We got told next time, don't bring your shopping list. My wife and I wanted to understand what is out there, what is available, what do we need to do next?

Don't bring your shopping list. That's heartbreaking, but it's actually the kind of thing parents here all the time.

Don't bring your shopping list. That's heartbreaking, but it's actually the kind of thing parents here all the time.

In my study I talked about the main theme was a battle theme that you that parents repeatedly used adjectives around battle, so they would repeatedly write fighting the system. It's a constant battle. No one tells you that you daily battle all the different organizations, or.

In my study I talked about the main theme was a battle theme that you that parents repeatedly used adjectives around battle, so they would repeatedly write fighting the system. It's a constant battle. No one tells you that you daily battle all the different organizations, or.

You get the diagnosis finally after waiting, waiting, waiting, you're sent out and there's no next steps and you're like, oh, oh, I thought it would be like a medical diagnosis. Now you did this and someone will call you about that. That that that that, and it's that was I think my lowest point where I went I finally got the diagnosis. Oh okay, I'm still alone.

You get the diagnosis finally after waiting, waiting, waiting, you're sent out and there's no next steps and you're like, oh, oh, I thought it would be like a medical diagnosis. Now you did this and someone will call you about that. That that that that, and it's that was I think my lowest point where I went I finally got the diagnosis. Oh okay, I'm still alone.

Yeah, the second battle for support again. Parents said that they thought that after the diagnosis exactly like you've just explained on it, there would be support, and there just was nothing. It was a desert of nothing. And there is some examples in our system where we've tried to put in place. So for example, I know the autism coordinators have done a great job up and down the country after a child get an autistic diagnosis trying to then give support for the FARO. But wouldn't it be great if it was across the board and communicated with the school so that that wasn't the parents hating to come in and share the messages. And also I think that parents are exhausted and then they go in and share the messages and they see in the education system a number of old fashioned ways of thinking about these diagnoses. So then you start another battle for your child's education and for what that might look like. I think as well, to be fair to teachers, teachers are also thinking about how underresourced they are and how they're going to fight for teacher ades and more support in the classroom.

Yeah, the second battle for support again. Parents said that they thought that after the diagnosis exactly like you've just explained on it, there would be support, and there just was nothing. It was a desert of nothing. And there is some examples in our system where we've tried to put in place. So for example, I know the autism coordinators have done a great job up and down the country after a child get an autistic diagnosis trying to then give support for the FARO. But wouldn't it be great if it was across the board and communicated with the school so that that wasn't the parents hating to come in and share the messages. And also I think that parents are exhausted and then they go in and share the messages and they see in the education system a number of old fashioned ways of thinking about these diagnoses. So then you start another battle for your child's education and for what that might look like. I think as well, to be fair to teachers, teachers are also thinking about how underresourced they are and how they're going to fight for teacher ades and more support in the classroom.

There are some great practitioners and educators out there that change lives, but it's sometimes it's luck who get there's no kind of meeting that far. No where they are at is so important. Most of the dads in the autism group knew early on that their kids' lives would be different from the picture they had, but often the neurodivergence is not obvious in kids until later, and loving, well meaning parents have no idea their kid is struggling, But then the fallout can be dramatic.

There are some great practitioners and educators out there that change lives, but it's sometimes it's luck who get there's no kind of meeting that far. No where they are at is so important. Most of the dads in the autism group knew early on that their kids' lives would be different from the picture they had, but often the neurodivergence is not obvious in kids until later, and loving, well meaning parents have no idea their kid is struggling, But then the fallout can be dramatic.

That decline from being okay and positive to us with a child and serious crisis was probably six weeks. You know, we went from thinking a little bit of social anxiety, we're just getting adjusted to school, to we need some really serious help.

That decline from being okay and positive to us with a child and serious crisis was probably six weeks. You know, we went from thinking a little bit of social anxiety, we're just getting adjusted to school, to we need some really serious help.

Broadcaster Francisca Radkins's daughter was thirteen when a mental health crisis turned everything upside down. That was two and a half years ago, and it was the toughest, most confusing period of the family's life.

Broadcaster Francisca Radkins's daughter was thirteen when a mental health crisis turned everything upside down. That was two and a half years ago, and it was the toughest, most confusing period of the family's life.

Like we were so clearly sitting in the doctor's office and the doctor going, you need some help. I would go private. Public system's going to take too long to get into. Here's the name of a couple of people, but you just need to ring around. Here's some pamphlets on anxiety and depression, and hey, look, if you're really worried about your child, you need to call the police or go to the ED. And I remember something going, I'm sorry, what And I can remember walking from the from the doctor's office to the reception and going feeling numb. You know that feeling when the adrenaline hurts and you just go numb. And I was going, Okay, we've got a really big problem on my hands here. But I have no idea what to do. I have no idea where to start. I don't even know how to look after my daughter today or tomorrow. Let alone solve this. What was ahead of us.

Like we were so clearly sitting in the doctor's office and the doctor going, you need some help. I would go private. Public system's going to take too long to get into. Here's the name of a couple of people, but you just need to ring around. Here's some pamphlets on anxiety and depression, and hey, look, if you're really worried about your child, you need to call the police or go to the ED. And I remember something going, I'm sorry, what And I can remember walking from the from the doctor's office to the reception and going feeling numb. You know that feeling when the adrenaline hurts and you just go numb. And I was going, Okay, we've got a really big problem on my hands here. But I have no idea what to do. I have no idea where to start. I don't even know how to look after my daughter today or tomorrow. Let alone solve this. What was ahead of us.

You know.

You know.

When you see that you were given some pamphlets in the same conversation that you might have to ring the idea about your like pamphlets.

When you see that you were given some pamphlets in the same conversation that you might have to ring the idea about your like pamphlets.

And you don't know what's wrong. No, it's kind of and what you start learning, especially around neurodiversity, is it's not one there's not one thing. There's lots of connections and you know, and what I now know is that it was just going to be this really long process to kind of unravel it.

And you don't know what's wrong. No, it's kind of and what you start learning, especially around neurodiversity, is it's not one there's not one thing. There's lots of connections and you know, and what I now know is that it was just going to be this really long process to kind of unravel it.

All.

All.

The masking and coping were classic signs of undiagnosed ADHD. It's such a familiar story for so many girls and women. The masking hides this stress they're feeling, and it's a long time before neurodivergence is even considered. Francesca says they were lucky to be able to access private therapy before the diagnostic process. Eventually, ADHD was identified along with some other neurodivergent profiles, but the process wasn't quick.

The masking and coping were classic signs of undiagnosed ADHD. It's such a familiar story for so many girls and women. The masking hides this stress they're feeling, and it's a long time before neurodivergence is even considered. Francesca says they were lucky to be able to access private therapy before the diagnostic process. Eventually, ADHD was identified along with some other neurodivergent profiles, but the process wasn't quick.

And so that took us a year. We were accepted into the public system in July of twenty twenty two, and we had our first appointment in February twenty twenty three. So that's how long you have to wait, and that's just heartbreaking. If we hadn't been able to get that private help before that, I don't know what would have happened. To be honest with you, I don't know where we'd be. We realized that our daughter had probably been struggling for a lot longer than we'd realized, but she had just been keeping on going. All of a sudden, all that coping, all that masking she had been doing her entire life no longer worked.

And so that took us a year. We were accepted into the public system in July of twenty twenty two, and we had our first appointment in February twenty twenty three. So that's how long you have to wait, and that's just heartbreaking. If we hadn't been able to get that private help before that, I don't know what would have happened. To be honest with you, I don't know where we'd be. We realized that our daughter had probably been struggling for a lot longer than we'd realized, but she had just been keeping on going. All of a sudden, all that coping, all that masking she had been doing her entire life no longer worked.

When you sent me through. You sent me through a really comprehensive background on your daughter. WOTS was wonderful and I was actually in tears reading it, and it just reminded me a lot of my situation. The Tira, the absolute Terrra just that really steep kind of declined, but you know, it just happened so fast, and you're like they're going to fall off the end of the world. Tell me how that.

When you sent me through. You sent me through a really comprehensive background on your daughter. WOTS was wonderful and I was actually in tears reading it, and it just reminded me a lot of my situation. The Tira, the absolute Terrra just that really steep kind of declined, but you know, it just happened so fast, and you're like they're going to fall off the end of the world. Tell me how that.

Was for you that period.

Was for you that period.

I felt like I was floating. I felt like I was on a cliff and I was sort of stepped out and I was just hovering. I was just hovering in the air, going okay, okay, I'm gonna or like a swan. You know, that's just sort of gracefully, you know, moving across the lake. But underneath my feet we're just paddling. I think you're in fight and flight mode twenty four seven, probably for almost two years. It's not It's not good for anyone. About a year in I was just exhausted. By that stage. Things were pretty bad at their worst, probably, and my daughter could not leave at the house, couldn't even stand in the window of our house for fear of being seen.

I felt like I was floating. I felt like I was on a cliff and I was sort of stepped out and I was just hovering. I was just hovering in the air, going okay, okay, I'm gonna or like a swan. You know, that's just sort of gracefully, you know, moving across the lake. But underneath my feet we're just paddling. I think you're in fight and flight mode twenty four seven, probably for almost two years. It's not It's not good for anyone. About a year in I was just exhausted. By that stage. Things were pretty bad at their worst, probably, and my daughter could not leave at the house, couldn't even stand in the window of our house for fear of being seen.

Francisca says that, without a doubt, this was the worst period of her life. I've talked to so many mums about this, the sense that you've somehow failed as a parent, that no matter what you do, how hard you work, all the research, all the love you give, it's just not enough. I ask Peter Parsons if it's the same for the fathers in his group. Do you feel like the dads feel like they're failing because it's their job to look after their family?

Francisca says that, without a doubt, this was the worst period of her life. I've talked to so many mums about this, the sense that you've somehow failed as a parent, that no matter what you do, how hard you work, all the research, all the love you give, it's just not enough. I ask Peter Parsons if it's the same for the fathers in his group. Do you feel like the dads feel like they're failing because it's their job to look after their family?

Definitely, because.

Definitely, because.

Sorry, you take your time.

Sorry, you take your time.

He's a dad, like it's your role, Like it's ingrained in you to be a provider and a protector for your family. And when your boy is non verbal and he can't tell you what's wrong, you can't help but feel like a failure sometimes because you can't give them what they need.

He's a dad, like it's your role, Like it's ingrained in you to be a provider and a protector for your family. And when your boy is non verbal and he can't tell you what's wrong, you can't help but feel like a failure sometimes because you can't give them what they need.

In the group, do the guys feel able to share that sort of thing, because that's it. Yeah, they'll all feel it, won't they.

In the group, do the guys feel able to share that sort of thing, because that's it. Yeah, they'll all feel it, won't they.

Yeah, yeah, yeah, Like in the back of your mind, you're always worried about the future, you know, because who's going to look after your child when you're gone? And that's always and the dads have all shared that, every single one of them. That's always a worry in the back of their mind.

Yeah, yeah, yeah, Like in the back of your mind, you're always worried about the future, you know, because who's going to look after your child when you're gone? And that's always and the dads have all shared that, every single one of them. That's always a worry in the back of their mind.

Tell me you said Jordan's got a heart of gold. Tell me their beautiful, wonderful things about Jordan.

Tell me you said Jordan's got a heart of gold. Tell me their beautiful, wonderful things about Jordan.

You can be tearing up again.

You can be tearing up again.

Gosh, he's he's the definition of a of a gentle giant.

Gosh, he's he's the definition of a of a gentle giant.

Like he's very.

Like he's very.

Tall for his age, but that could will not hurt a fly. He's very laid back, he's very you know, his teachers love him because he's just so easy to look after.

Tall for his age, but that could will not hurt a fly. He's very laid back, he's very you know, his teachers love him because he's just so easy to look after.

What gives him joy? What what does he.

What gives him joy? What what does he.

Love to do?

Love to do?

He so he loves So he's eleven, but he's still into like Frozen, like Minions and all that sort of stuff. And he loves to go to the movies. That's his favorite thing. Really, Yea, he loves to go to the movies. So we've seen like that Despicable Me movie, that's come out like at least ten times.

He so he loves So he's eleven, but he's still into like Frozen, like Minions and all that sort of stuff. And he loves to go to the movies. That's his favorite thing. Really, Yea, he loves to go to the movies. So we've seen like that Despicable Me movie, that's come out like at least ten times.

But it's his.

But it's his.

Thing, you know, So he is not good enough to sit here and watch Eddie wants to go to the movie there.

Thing, you know, So he is not good enough to sit here and watch Eddie wants to go to the movie there.

Yeah, it's going to be in the movies.

Yeah, it's going to be in the movies.

So he'll grab my phone, find the Holts app and then open it up in your point to the movie and I'm like, okay, we're going to the movies again, you know.

So he'll grab my phone, find the Holts app and then open it up in your point to the movie and I'm like, okay, we're going to the movies again, you know.

So that gives us hope.

So that gives us hope.

What would you like society to know too?

What would you like society to know too?

What?

What?

What would help.

What would help.

Hm? It's it's a tough one because at the end of the day, when you're non verbal, like you can't tell people what you want and what you need going forward.

Hm? It's it's a tough one because at the end of the day, when you're non verbal, like you can't tell people what you want and what you need going forward.

Well, even who you are.

Well, even who you are.

Yeah, it's exactly, that's exactly it.

Yeah, it's exactly, that's exactly it.

There's almost no space to go. Let's find his thing.

There's almost no space to go. Let's find his thing.

It's a very good point, like saying, like you just get caught up, you know, that's the day to day struggle that to be honest with myself, I'm like, you know, he's got a speech device. He tells us what he needs, Yeah, but what does he want? How do we find a way to really get to know what Jordan wants and who he is and what he's excited about.

It's a very good point, like saying, like you just get caught up, you know, that's the day to day struggle that to be honest with myself, I'm like, you know, he's got a speech device. He tells us what he needs, Yeah, but what does he want? How do we find a way to really get to know what Jordan wants and who he is and what he's excited about.

So that's that's a very good points, such a good point.

So that's that's a very good points, such a good point.

Yeah, and that's what But that's the thing. You guys are so stuck in it that you don't have the space to think that, but the rest of us could do, you know what I mean. It's like, even if I can't speak to Jordan, you know, I've just was with him before, Like I get something from that interaction. And that's I think missing from the story. A lot of the time, the narrative becomes, oh, we're just giving to the disabled all the time. I feel that a lot of these kids are invisible to society unless something goes wrong, and then then it's like control your kid or something like that. Yeah, when my daughter used to have frequent meltdowns in public, it was the people that came and said, what can I do to help? And I just wanted to hug them and just shower them with love because you know, you're panicking in that moment, because you know, I sometimes I had my other daughter. You don't know how you're going to get out, you don't know if they're going to hurt someone. You're embarrassed. This face it the bit of humiliation in there. It's horrible. And when someone can just do something like what can I do? How can I help? Simple things like that, Yeah, oh totally totally.

Yeah, and that's what But that's the thing. You guys are so stuck in it that you don't have the space to think that, but the rest of us could do, you know what I mean. It's like, even if I can't speak to Jordan, you know, I've just was with him before, Like I get something from that interaction. And that's I think missing from the story. A lot of the time, the narrative becomes, oh, we're just giving to the disabled all the time. I feel that a lot of these kids are invisible to society unless something goes wrong, and then then it's like control your kid or something like that. Yeah, when my daughter used to have frequent meltdowns in public, it was the people that came and said, what can I do to help? And I just wanted to hug them and just shower them with love because you know, you're panicking in that moment, because you know, I sometimes I had my other daughter. You don't know how you're going to get out, you don't know if they're going to hurt someone. You're embarrassed. This face it the bit of humiliation in there. It's horrible. And when someone can just do something like what can I do? How can I help? Simple things like that, Yeah, oh totally totally.

And that's that's what gives me hope as seeing all these different support groups, organizations and even what you guys are doing, because the more awareness we get out there, the better the chance we have of people that are there don't live our lives.

And that's that's what gives me hope as seeing all these different support groups, organizations and even what you guys are doing, because the more awareness we get out there, the better the chance we have of people that are there don't live our lives.

We're able to see, hang on, let's not.

We're able to see, hang on, let's not.

You know, be so quick to judge and say, oh this person, well, this child is just being you know, like a brat, like it's just misbehaving. So it's the more awareness we can get out of there, the better chance we have these people saying that instead of being judgmental, we should be jumping in there and saying, like you say, how can we help.

You know, be so quick to judge and say, oh this person, well, this child is just being you know, like a brat, like it's just misbehaving. So it's the more awareness we can get out of there, the better chance we have these people saying that instead of being judgmental, we should be jumping in there and saying, like you say, how can we help.

Francisca Rudkins says having a neurodivergent daughter has completely changed her jesys. Now she's more empathetic and compassionate. Yes, it's been an adjustment, a huge one, but you can see the positives.

Francisca Rudkins says having a neurodivergent daughter has completely changed her jesys. Now she's more empathetic and compassionate. Yes, it's been an adjustment, a huge one, but you can see the positives.

It's really hard when you look around and your child isn't living the life that everyone else's kids living, and you thought that you'd be living, But then what I've got from the experience I've had with my kid. Not doing some of that stuff is actually really awesome, you know, like there's a whole lot of benefits of being in an environment where you're not doing a whole lot of stuff that you don't really want to do. It's just because you have to do it and everyone's doing it, and that's the way school works, and that's the way social world works and things like that. So the thing that a lot of people tell you first up, just love your child. And it's a lovely thing to say, but I didn't understand it at the time. It made no sense to me. I'm sending there, going to the doctor. I'm here because I love her. I'm urgently trying to get her help because I love her. Loving her is not that's not practical, that's not helpful to me. Now, that's not telling me how to deal with a kid who is you can't get out of bed in the morning. I don't understand. And what I worked out about six months later was that whole idea that the love's going to mean something a bit different. Now, It's going to mean that you're going to accept and that you're going to learn and You're going to adjust that, You're going to listen to your child, that you're going to be there for them. You're not going to try and solve every problem. You're not going to tell them how to get better, on what to do. You're actually going to accept that on a daily basis, your kid is trying to do the best they can. Might not look like it, but they are, and you're the one that's going to tell them, well done, It's all okay. They just need to know that there's one person there not judging them, not telling them what to do. And it took me a long time to learn this doesn't matter. Still love you.

It's really hard when you look around and your child isn't living the life that everyone else's kids living, and you thought that you'd be living, But then what I've got from the experience I've had with my kid. Not doing some of that stuff is actually really awesome, you know, like there's a whole lot of benefits of being in an environment where you're not doing a whole lot of stuff that you don't really want to do. It's just because you have to do it and everyone's doing it, and that's the way school works, and that's the way social world works and things like that. So the thing that a lot of people tell you first up, just love your child. And it's a lovely thing to say, but I didn't understand it at the time. It made no sense to me. I'm sending there, going to the doctor. I'm here because I love her. I'm urgently trying to get her help because I love her. Loving her is not that's not practical, that's not helpful to me. Now, that's not telling me how to deal with a kid who is you can't get out of bed in the morning. I don't understand. And what I worked out about six months later was that whole idea that the love's going to mean something a bit different. Now, It's going to mean that you're going to accept and that you're going to learn and You're going to adjust that, You're going to listen to your child, that you're going to be there for them. You're not going to try and solve every problem. You're not going to tell them how to get better, on what to do. You're actually going to accept that on a daily basis, your kid is trying to do the best they can. Might not look like it, but they are, and you're the one that's going to tell them, well done, It's all okay. They just need to know that there's one person there not judging them, not telling them what to do. And it took me a long time to learn this doesn't matter. Still love you.

Staying on your kid's team, that is crucial. You'll hear more from Francesca Radken in next week's episode. She has a wonderful insight and I am keen to share it for now. I leave the last word to the Dad's Autism group.

Staying on your kid's team, that is crucial. You'll hear more from Francesca Radken in next week's episode. She has a wonderful insight and I am keen to share it for now. I leave the last word to the Dad's Autism group.

Most of the time, we're so caught up in our lice at home and providing that supports around our kids. That's why it's so important to me to be here and to be myself.

Most of the time, we're so caught up in our lice at home and providing that supports around our kids. That's why it's so important to me to be here and to be myself.

But you come, if you revitalize, you're good for another few weeks and then you start going downhill, and then you evenother catch up and then you keep on going.

But you come, if you revitalize, you're good for another few weeks and then you start going downhill, and then you evenother catch up and then you keep on going.

You know what I mean.

You know what I mean.

If I have a bad night, I can message a group in the morning and you'll be someone replying back saying, hey, been through it before.

If I have a bad night, I can message a group in the morning and you'll be someone replying back saying, hey, been through it before.

I hope that I can share something with one of the dads, because the dads man, they man the amount of information and things that I've learned, but also what they shared is.

I hope that I can share something with one of the dads, because the dads man, they man the amount of information and things that I've learned, but also what they shared is.

Like, man, who am I you complain?

Like, man, who am I you complain?

I'm just grateful to be in a possession where you know, we can provide a safe space for these dads to you know, to come and share. Like every single catchup we've had, we've had new dads turn up, you know, and the stuff they share about, you know, some of it's really wrong. It's tough times. And when they say that, you know, they've never been able to offload like that before. Just it just makes it so worthwhile. Times like that, it's like, you know, dads can see that we can still be parents that have great friendships and have a laugh, have a beer, and you know.

I'm just grateful to be in a possession where you know, we can provide a safe space for these dads to you know, to come and share. Like every single catchup we've had, we've had new dads turn up, you know, and the stuff they share about, you know, some of it's really wrong. It's tough times. And when they say that, you know, they've never been able to offload like that before. Just it just makes it so worthwhile. Times like that, it's like, you know, dads can see that we can still be parents that have great friendships and have a laugh, have a beer, and you know.

Just enjoy life.

Just enjoy life.

Like yeah, yeah, exactly exactly, and in a deeper way, I reckon in a realer way. Absolutely, next time on No Such Thing as Normal? Why News at six presenter Melissa Stokes.

Like yeah, yeah, exactly exactly, and in a deeper way, I reckon in a realer way. Absolutely, next time on No Such Thing as Normal? Why News at six presenter Melissa Stokes.

They don't understand that this is just our reality. It's not our parenting. I can do a whole lot of things that you've done with your kids, but it just will not work with mine.

They don't understand that this is just our reality. It's not our parenting. I can do a whole lot of things that you've done with your kids, but it just will not work with mine.

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. Aren O'Connor and Mitchell Hawkes are executive producers. Production assistant is Beck's War. The series is brought to 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.

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. Aren O'Connor and Mitchell Hawkes are executive producers. Production assistant is Beck's War. The series is brought to 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.