October 4, 2024 • 31 mins
Parenting a neurodivergent child is wonderful, but it’s challenging. Often, it can feel like the only people who understand are other parents on the same road.
In this episode, Sonia talks to Francesca Rudkin, who had to navigate life with a daughter in crisis, before ADHD was identified.
We meet members of the ‘Dad’s Autism Support Group’ in Auckland who all have kids with high-needs on the autism spectrum. They say connecting with each other regularly, and sharing the highs - and the lows - has been invaluable.
And educational psychologist, Willow Sainsbury, talks about the experience for parents getting a diagnosis and support. The main theme of her research study was ‘the battle’.
Guests:
Francesca Rudkin
Peter, Mac, Noah and Gareth from the Dad’s Autism Support Group
Willow Sainsbury Research Study on Parent's Experiences
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Episode Transcript
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Speaker 1 (00:00):
Just a note, this episode does contain explicit language.
Speaker 2 (00:06):
Oh would you like a glass of wine?
Speaker 1 (00:13):
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.
Speaker 2 (00:21):
We're just having a little bit of a mum's ketchup
out here.
Speaker 1 (00:24):
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
(00:47):
group is a place of refuge.
Speaker 2 (00:50):
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
(01:11):
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.
Speaker 1 (01:23):
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
(01:47):
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,
(02:09):
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
(02:31):
changes you profoundly. There are great unexpected rewards, but it
is a PhD in parenting.
Speaker 3 (02:42):
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.
Speaker 1 (02:52):
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.
Speaker 3 (03:14):
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.
(03:35):
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,
(03:57):
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.
Speaker 1 (04:09):
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.
Speaker 4 (04:30):
That's so true.
Speaker 1 (04:31):
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
(04:53):
we talk about the initial denial.
Speaker 3 (04:59):
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,
(05:21):
as the years have gone by and Jordan's grown up,
and it's like, man, he is an amazing kid.
Speaker 4 (05:27):
You know, he's got a harder goal.
Speaker 3 (05:31):
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
(05:52):
each other.
Speaker 1 (05:54):
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
(06:16):
is I think beautiful.
Speaker 3 (06:17):
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.
Speaker 4 (06:31):
You know.
Speaker 3 (06:31):
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.
Speaker 5 (06:52):
When my son was first diagnosed, we had no idea
what autism wants.
Speaker 1 (06:57):
That's Mac Ponneu, another dad in this group. His five
year old son Matthias, is autistic.
Speaker 5 (07:04):
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
(07:26):
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
(07:49):
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
(08:09):
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.
Speaker 6 (08:26):
It's definitely come up families sharing with me a lack
of trust in the system.
Speaker 1 (08:33):
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.
Speaker 6 (08:49):
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
(09:12):
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?
Speaker 2 (09:28):
Good questions?
Speaker 1 (09:29):
Thank you? What were the answers?
Speaker 6 (09:32):
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.
(09:54):
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
(10:16):
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,
(10:37):
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
(11:00):
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
(11:21):
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.
Speaker 1 (11:44):
Mac member of the Dad's Autism group, agrees that the
supports just aren't there.
Speaker 5 (11:50):
You go to get a diagnosis and then you basically
just get dumb in the system. You go out and
find things out yourself.
Speaker 1 (11:57):
And other parents apparent resources.
Speaker 5 (12:01):
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
(12:22):
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.
Speaker 1 (12:39):
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.
Speaker 5 (12:50):
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?
Speaker 1 (13:00):
Don't bring your shopping list. That's heartbreaking, but it's actually
the kind of thing parents here all the time.
Speaker 6 (13:10):
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.
Speaker 1 (13:32):
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.
(13:53):
Oh okay, I'm still alone.
Speaker 6 (13:56):
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
(14:18):
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
(14:40):
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
(15:02):
how underresourced they are and how they're going to fight
for teacher ades and more support in the classroom.
Speaker 1 (15:09):
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
(15:37):
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.
Speaker 7 (15:56):
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.
Speaker 1 (16:19):
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.
Speaker 7 (16:35):
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
(16:55):
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
(17:18):
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.
Speaker 3 (17:28):
You know.
Speaker 1 (17:30):
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.
Speaker 7 (17:37):
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.
Speaker 5 (17:57):
All.
Speaker 1 (18:00):
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
(18:24):
other neurodivergent profiles, but the process wasn't quick.
Speaker 7 (18:30):
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.
(18:54):
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.
Speaker 1 (19:11):
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
(19:35):
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.
Speaker 2 (19:41):
Was for you that period.
Speaker 7 (19:51):
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.
(20:11):
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,
(20:36):
and my daughter could not leave at the house, couldn't
even stand in the window of our house for fear
of being seen.
Speaker 1 (20:49):
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
(21:13):
the dads feel like they're failing because it's their job
to look after their family?
Speaker 4 (21:19):
Definitely, because.
Speaker 1 (21:24):
Sorry, you take your time.
Speaker 3 (21:36):
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
(21:57):
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.
Speaker 1 (22:11):
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.
Speaker 3 (22:25):
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.
Speaker 1 (22:52):
Tell me you said Jordan's got a heart of gold.
Tell me their beautiful, wonderful things about Jordan.
Speaker 4 (23:01):
You can be tearing up again.
Speaker 3 (23:02):
Gosh, he's he's the definition of a of a gentle giant.
Speaker 4 (23:11):
Like he's very.
Speaker 3 (23:12):
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.
Speaker 1 (23:29):
What gives him joy? What what does he.
Speaker 8 (23:31):
Love to do?
Speaker 3 (23:33):
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.
Speaker 4 (23:53):
But it's his.
Speaker 1 (23:53):
Thing, you know, So he is not good enough to
sit here and watch Eddie wants to go to the
movie there.
Speaker 4 (23:57):
Yeah, it's going to be in the movies.
Speaker 3 (23:58):
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.
Speaker 4 (24:06):
So that gives us hope.
Speaker 1 (24:15):
What would you like society to know too?
Speaker 9 (24:20):
What?
Speaker 1 (24:20):
What would help.
Speaker 3 (24:22):
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.
Speaker 1 (24:37):
Well, even who you are.
Speaker 4 (24:39):
Yeah, it's exactly, that's exactly it.
Speaker 1 (24:41):
There's almost no space to go. Let's find his thing.
Speaker 3 (24:45):
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.
Speaker 4 (25:05):
So that's that's a very good points, such a good point.
Speaker 1 (25:07):
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
(25:29):
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
(25:51):
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
(26:13):
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.
Speaker 3 (26:24):
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.
Speaker 4 (26:41):
We're able to see, hang on, let's not.
Speaker 3 (26:46):
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.
Speaker 1 (27:18):
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.
Speaker 7 (27:33):
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
(27:54):
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.
(28:16):
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
(28:37):
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,
(28:59):
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.
Speaker 1 (29:17):
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.
Speaker 5 (29:33):
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.
Speaker 10 (29:45):
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.
Speaker 4 (29:53):
You know what I mean.
Speaker 10 (29:54):
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.
Speaker 9 (30:02):
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.
Speaker 4 (30:14):
Like, man, who am I you complain?
Speaker 3 (30:18):
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,
(30:42):
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.
Speaker 4 (30:51):
Just enjoy life.
Speaker 1 (30:52):
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.
Speaker 8 (31:06):
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.
Speaker 1 (31:18):
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
(31:39):
it's made with the support of New Zealand on Air.
New episodes of No Such Thing As Normal are available
every Saturday wherever you get your podcasts.
Just a note, this episode does contain explicit language.
Speaker 2 (00:06):
Oh would you like a glass of wine?
Speaker 1 (00:13):
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.
Speaker 2 (00:21):
We're just having a little bit of a mum's ketchup
out here.
Speaker 1 (00:24):
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
(00:47):
group is a place of refuge.
Speaker 2 (00:50):
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
(01:11):
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.
Speaker 1 (01:23):
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
(01:47):
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,
(02:09):
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
(02:31):
changes you profoundly. There are great unexpected rewards, but it
is a PhD in parenting.
Speaker 3 (02:42):
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.
Speaker 1 (02:52):
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.
Speaker 3 (03:14):
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.
(03:35):
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,
(03:57):
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.
Speaker 1 (04:09):
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.
Speaker 4 (04:30):
That's so true.
Speaker 1 (04:31):
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
(04:53):
we talk about the initial denial.
Speaker 3 (04:59):
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,
(05:21):
as the years have gone by and Jordan's grown up,
and it's like, man, he is an amazing kid.
Speaker 4 (05:27):
You know, he's got a harder goal.
Speaker 3 (05:31):
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
(05:52):
each other.
Speaker 1 (05:54):
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
(06:16):
is I think beautiful.
Speaker 3 (06:17):
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.
Speaker 4 (06:31):
You know.
Speaker 3 (06:31):
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.
Speaker 5 (06:52):
When my son was first diagnosed, we had no idea
what autism wants.
Speaker 1 (06:57):
That's Mac Ponneu, another dad in this group. His five
year old son Matthias, is autistic.
Speaker 5 (07:04):
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
(07:26):
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
(07:49):
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
(08:09):
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.
Speaker 6 (08:26):
It's definitely come up families sharing with me a lack
of trust in the system.
Speaker 1 (08:33):
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.
Speaker 6 (08:49):
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
(09:12):
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?
Speaker 2 (09:28):
Good questions?
Speaker 1 (09:29):
Thank you? What were the answers?
Speaker 6 (09:32):
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.
(09:54):
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
(10:16):
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,
(10:37):
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
(11:00):
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
(11:21):
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.
Speaker 1 (11:44):
Mac member of the Dad's Autism group, agrees that the
supports just aren't there.
Speaker 5 (11:50):
You go to get a diagnosis and then you basically
just get dumb in the system. You go out and
find things out yourself.
Speaker 1 (11:57):
And other parents apparent resources.
Speaker 5 (12:01):
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
(12:22):
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.
Speaker 1 (12:39):
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.
Speaker 5 (12:50):
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?
Speaker 1 (13:00):
Don't bring your shopping list. That's heartbreaking, but it's actually
the kind of thing parents here all the time.
Speaker 6 (13:10):
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.
Speaker 1 (13:32):
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.
(13:53):
Oh okay, I'm still alone.
Speaker 6 (13:56):
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
(14:18):
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
(14:40):
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
(15:02):
how underresourced they are and how they're going to fight
for teacher ades and more support in the classroom.
Speaker 1 (15:09):
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
(15:37):
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.
Speaker 7 (15:56):
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.
Speaker 1 (16:19):
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.
Speaker 7 (16:35):
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
(16:55):
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
(17:18):
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.
Speaker 3 (17:28):
You know.
Speaker 1 (17:30):
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.
Speaker 7 (17:37):
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.
Speaker 5 (17:57):
All.
Speaker 1 (18:00):
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
(18:24):
other neurodivergent profiles, but the process wasn't quick.
Speaker 7 (18:30):
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.
(18:54):
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.
Speaker 1 (19:11):
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
(19:35):
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.
Speaker 2 (19:41):
Was for you that period.
Speaker 7 (19:51):
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.
(20:11):
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,
(20:36):
and my daughter could not leave at the house, couldn't
even stand in the window of our house for fear
of being seen.
Speaker 1 (20:49):
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
(21:13):
the dads feel like they're failing because it's their job
to look after their family?
Speaker 4 (21:19):
Definitely, because.
Speaker 1 (21:24):
Sorry, you take your time.
Speaker 3 (21:36):
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
(21:57):
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.
Speaker 1 (22:11):
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.
Speaker 3 (22:25):
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.
Speaker 1 (22:52):
Tell me you said Jordan's got a heart of gold.
Tell me their beautiful, wonderful things about Jordan.
Speaker 4 (23:01):
You can be tearing up again.
Speaker 3 (23:02):
Gosh, he's he's the definition of a of a gentle giant.
Speaker 4 (23:11):
Like he's very.
Speaker 3 (23:12):
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.
Speaker 1 (23:29):
What gives him joy? What what does he.
Speaker 8 (23:31):
Love to do?
Speaker 3 (23:33):
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.
Speaker 4 (23:53):
But it's his.
Speaker 1 (23:53):
Thing, you know, So he is not good enough to
sit here and watch Eddie wants to go to the
movie there.
Speaker 4 (23:57):
Yeah, it's going to be in the movies.
Speaker 3 (23:58):
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.
Speaker 4 (24:06):
So that gives us hope.
Speaker 1 (24:15):
What would you like society to know too?
Speaker 9 (24:20):
What?
Speaker 1 (24:20):
What would help.
Speaker 3 (24:22):
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.
Speaker 1 (24:37):
Well, even who you are.
Speaker 4 (24:39):
Yeah, it's exactly, that's exactly it.
Speaker 1 (24:41):
There's almost no space to go. Let's find his thing.
Speaker 3 (24:45):
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.
Speaker 4 (25:05):
So that's that's a very good points, such a good point.
Speaker 1 (25:07):
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
(25:29):
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
(25:51):
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
(26:13):
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.
Speaker 3 (26:24):
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.
Speaker 4 (26:41):
We're able to see, hang on, let's not.
Speaker 3 (26:46):
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.
Speaker 1 (27:18):
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.
Speaker 7 (27:33):
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
(27:54):
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.
(28:16):
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
(28:37):
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,
(28:59):
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.
Speaker 1 (29:17):
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.
Speaker 5 (29:33):
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.
Speaker 10 (29:45):
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.
Speaker 4 (29:53):
You know what I mean.
Speaker 10 (29:54):
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.
Speaker 9 (30:02):
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.
Speaker 4 (30:14):
Like, man, who am I you complain?
Speaker 3 (30:18):
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,
(30:42):
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.
Speaker 4 (30:51):
Just enjoy life.
Speaker 1 (30:52):
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.
Speaker 8 (31:06):
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.
Speaker 1 (31:18):
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
(31:39):
it's made with the support of New Zealand on Air.
New episodes of No Such Thing As Normal are available
every Saturday wherever you get your podcasts.
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