October 11, 2024 • 30 mins
The parents of kids with neurodifferences face multiple challenges. But while navigating a broken system is exhausting, the constant scrutiny of your parenting can be worse.
In this episode, Sonia talks to TVNZ’s 1News at 6 presenter, Melissa Stokes and Newstalk ZB Host, Francesca Rudkin about advocating for their children.
And researcher Willow Sainsbury, explains why the go-to suggestion of ‘parenting courses’ can be so distressing for parents.
Guests:
Melissa Stokes
Francesca Rudkin
Willow Sainsbury Research Study on Parent's Experiences
Instagram - No Such Thing as Normal Podcast
Resources:
Online Every Day with ADHD Parenting Evening Course
Programmes Archive - Autism NZ
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Tonight on One News, Dunedin's damage revealed.
Speaker 2 (00:05):
One News at six presenter Melissa Stokes has been a
beloved fixture on our screens for over twenty years.
Speaker 1 (00:11):
Benanto can't a good evening. Dunedin is now in recovery mode.
Speaker 2 (00:16):
She's brought us the big stories and the breaking news,
and she does it all with grace.
Speaker 1 (00:20):
Nine homes of red sticker boil.
Speaker 2 (00:23):
Water, even delivering the tough and terrifying news. Melissa's bibers.
Don't worry, guys, we got this.
Speaker 1 (00:29):
I have more on that later, but first, but.
Speaker 2 (00:32):
Behind the scenes, things aren't always composed. Melissa's oldest son, Hugo,
has ADHD and there is never a dill moment.
Speaker 1 (00:41):
Hugo is the wild ride to be a parent of.
He starts every morning like a energizer bunny, where he
jumps out of bed and yells in our very small house.
Speaker 3 (00:55):
Good morning New Zealand, Gelda.
Speaker 2 (01:07):
I'm Sonia Gray and this is no such thing as normal.
Series two. I'm 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 this series, you'll hear from experts and from many
wonderful people who experience the world in the unique way.
(01:30):
We're looking at neurodiversity from the inside. This is the
second of a two part look at parenting, and parenting
could be an entire series because it's a lot. The
(01:50):
constant appointments, the dreaded phone calls from the school, the
deep dive into alternative treatments, the panic when the only
brand of cheese your kid will eat is discontent. Knew
all of this, and then someone offers a helpful piece
of advice, like is it wise to give her sugar?
If a child's neurodifference isn't obvious, then it's often seen
(02:12):
as a choice. So if there are behavioral issues, the
autism or ADHD becomes the naughty kid and the bad parent.
Why is it still okay to shame and blame parents?
Speaker 1 (02:28):
Hugo has always just been full noise when people kept
telling us, Oh, he's the most talkative kid we've ever had,
or he's the most observant kid we've ever had, and
at first he kind of feel like, oh, well, that's
got to be a good thing, isn't it? And then
gradually we realized it's not not a good thing, but
there are things he needed help with so that his
(02:48):
world wasn't so big all the time?
Speaker 2 (02:51):
Does Melissa Stokes and I have a semi regular Saturday
evening date and TV and Z's make up. Whilst she's
getting made up to bring the latest news to the nation,
I'm getting made up to bring the latest Lotto numbers
to the nation. And over the noise of the blow dryers,
there is a lot of chat for Melissa and I.
The conversation often turns to our children there because we
(03:14):
both have kids who experienced the world in a very
different way. So what happened to make you guys go Okay,
maybe this is more than just a really active, boisterous cude.
Maybe we need some sort of intervention.
Speaker 4 (03:28):
Yeah.
Speaker 1 (03:28):
I can't remember the exact point, because, as you know,
you do feel like you traverse so many kind of
ups and downs. But he must have been in about
year three. His focus, I think in the classroom was
everywhere instead of being on the page in front of him,
So they were starting to identify things. You know, he
wasn't really finishing work. He was showing all the right
(03:49):
attitude but he just kind of couldn't didn't have the
focused again, there.
Speaker 2 (03:54):
Was sort of there was chaos, Yeah, because I think
the thing about a classroom is you kind of need
to be able to focus on that one thing the
teacher wants you to focus on at that time. Yes,
And as an ADHD, I know that you just don't
have control over what you want to focus on it,
especially as a kid.
Speaker 1 (04:09):
And we didn't realize that either. Obviously his focus was
so wide it was causing problems in his head as well.
And then it got to the point where the teachers
came to us and says, we actually think he's near
a breakdown, and so kind of to say that about
a six or seven year old kid that we really
(04:31):
think he is on the edge was really confronting. I
think his world had just got too big. His anxiety
got really bad about going to school and it had
turned into a really safe and happy place to a
place he didn't want to go to. And that's when
really we had to take action because it obviously you
(04:52):
don't want that and that was really upsetting.
Speaker 2 (04:55):
Yeah, how were you at that time?
Speaker 1 (04:57):
Ah? It was awful, you know, to cut it, but yeah,
it was awful at the time. Yeah, but it always is,
as you know, like how I always talk to you
about it because you think, ah, we've written this out,
but then there's always the next thing. Yeah.
Speaker 2 (05:12):
And the hard thing is that when you've had a
period of kind of stability for a while, yeah, then
you go down again. It's almost worse. How did you
find navigating the system help?
Speaker 1 (05:28):
For us, it was non existent in terms of public
help because even though we had you know, I think
a doctor and somebody else write a letter saying that
this kid was at breaking point, you know, it's six there,
we still didn't reach your threshold. So you know, gosh,
(05:49):
we're very fortunate that we can do it on our own.
And we found who I think you've actually had on
the podcast before, Lucy the Ot. We loved Lucy and
Lucy and she would come to.
Speaker 2 (06:02):
Lovely Lucy as an occupational therapist who shared her expert
advice in series one of this podcast. It can be
luck finding good people, and Melissa was lucky. That was
six years ago. A pediatrician had suggested Hugo have therapy
sessions with Lucy for six months, see how it went,
and maybe then come back to see her, and.
Speaker 1 (06:23):
So he went and worked with Lucy and on the
second session she said, I shouldn't really be you know,
this is not my job, but I think you'd benefit
from medication, and so for a person to see him.
After two sessions and we were meant to be there
for six months, she was like, I think you should
go back to our pediatrician. And we went back and
(06:45):
that's when that started. She kind of was, you know,
very clear he has ady EHG and he's probably got
other things as well, but she's like, we don't really
need to spend the money on that diagnosis. We know
that and we just work with it. Yeah.
Speaker 2 (07:02):
Yeah, you take the kid that's in front of you
and go what do they need?
Speaker 1 (07:06):
But Hugo is so different to any other kid I
know with ADHD. I just think they're all so different
that there isn't kind of one program or one expert
that I could go to for all the answers.
Speaker 2 (07:22):
Was it suggested to you that you do parenting courses?
Speaker 1 (07:24):
We were repeatedly told to go to parenting courses for
his behavior or for us to learn how to manage
his behavior. But I just could tell that they were
never going to be right for us. Yeah, maybe I
was wrong, but I just think I could tell the
gut feeling was it wasn't going to help.
Speaker 2 (07:44):
Gut advice is good advice. Often it's the best advice
when it comes to parenting because you are an expert
in your kid. But some of the systems in place
try and tell you repeatedly that you are not.
Speaker 5 (08:02):
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.
Speaker 2 (08:10):
That's educational psychologist Willow Sainsbury talking in last week's episode
about her research on the experience of parents in this system.
At the end of the study, she asked three questions,
what was helpful, what was unhelpful? And what would you
like to change about the diagnostic process? And the results
were pages and pages of writing. The main theme of
(08:32):
her final paper became.
Speaker 5 (08:34):
The battle Yeah, just so many a sense of adversarial conflict,
the war zone.
Speaker 2 (08:40):
Nice little yeah.
Speaker 5 (08:42):
But for me as a practitioner, one of the things
that enabled me to reflect was the discussion around parenting courses.
And I think this really struck me because when I
was working I would often recommend parents to go on
parenting courses, and you're going to take this opportunity to
(09:04):
apologize to any parents out there who I recommended going
on a parenting course, because I think parents, in what
they voiced about what was unhelpful is that when they
begin the diagnostic process for their child, they are carrying
so much guilt. Have they done everything they can as
(09:27):
a parent? What more can they do? They are told
it's not their fault, and then immediately it's recommended that
they go on a parenting course. And I think parents explain.
Speaker 3 (09:40):
To me.
Speaker 5 (09:42):
Just how that messaging was received. And I really didn't
have that perspective before that study, and very sage philosophical
parents writing, you know, we understand why a parenting course
is useful, but the timing of it, particularly before diagnosis,
before their child's been assessed, feels like it is a
(10:04):
gatekeeper for help for their children. So I just gained
a whole new perspective. And I think then that they
often went on to explain that the parenting courses also
weren't helpful for neurodivergent children, and that they were also
not taken into account the parent's own skill sets. So,
(10:26):
for example, one parent said I'm an early childhood educator
and you sent me on a parenting course, and it's
definitely changed the way I think of as a clinician.
Even though a parenting course is evidence based, think about
the timing, think about the way it's interpreted, and how
we could perhaps do that differently and work more collaboratively
(10:46):
with parents around what that might look like.
Speaker 2 (10:50):
I think if it's presented as part of a complete
protocol or complete plan, that would be easier. The problem
is kind of layer because you're right, you're already feeling
like a failure as a parent because your child is
very obviously not coping, And then it's kind of implied
(11:12):
that they agree with that, yes, because you need more
skills as a parent. Plus, in my case and in
many parents' cases, you're exhausted. So the idea of having
to go somewhere every Tuesday night from seven thirty to
nine thirty for eight weeks, how how will I find
the space to do that? Yeah, there are some great
(11:36):
parenting courses out there which especially tailored to parents of
neurodivergent kids. Will put some links to those in the
show notes. The battle is constant for all parents, But
(12:03):
if you're in a minority group, the system makes it
even tougher. Research has shown that certain biases still exist
and the barriers to getting diagnosis and support are very real.
It's risky for Mali Farno to seek diagnosis and support
for their kids. Willow Sainsbury's research highlighted the despair all
(12:23):
parents feel in the system, but as an educational psychologist,
she's experienced the risk factor that is very real for
minority groups.
Speaker 5 (12:34):
So families sharing with me a lack of trust in
the system. And actually, I think it's an incredible privilege
to get to that stage where actually families can say
that this system can be dangerous for us. It's also
layers of trauma of families having a sense of distrust
(12:56):
in terms of other sometimes direct experiences. And unfortunately, the
system is set up in such a way that quite
a few parents, I would venture to say, feel like
the system is a battle, that it's dangerous, that they're
constantly worried about labels being put on their children that
(13:18):
aren't right, and also labels on their family that aren't right.
Speaker 2 (13:22):
It's interesting, isn't it, Because we have to present all
the deficits when we are describing our child However, we
have to present zero deficits when we are describing our farno,
and I guess it would be easier to go, oh,
it's that for anybody, because the whole neurodiversity is so
(13:44):
difficult to quantify, I guess, and if you can just go, wow,
there was a messy divorce and that's why his behavior
is bad. But that's what worries me is that we
don't for some kids, we miss them because there is
something else going on, the be other things going on
with the faro.
Speaker 5 (14:03):
Yeah, I know exactly what you are describing.
Speaker 2 (14:07):
Thank you, because I felt like I explained that really badly.
Speaker 5 (14:10):
No, not at all. I think that what ends up happening.
And I'm going to give you the perspective from a clinician,
from an ed psyche perspective, you are also worried about
missing things. Are categories of neurodevelopmental conditions are far from perfect,
(14:31):
and actually working out exactly what is happening is really difficult. Now,
I would argue that it's a lot easier if you're
working in collaboration with the parents with a faro the
kid in front of you, and understanding from their perspective
what's happening. I think that parents often feel that they
(14:52):
need to play the game, that they need to present
the deficits of their child, jump through the hoops of
parenting courses. They understood how the system worked, but nonetheless,
couldn't it be done in a different way. If they've
got to the stage where they're saying, my child and
I need help, and then they should be viewed as
(15:16):
the parents that are thinking about it and have self
selected to be supported and that are good parents because
they're worried about these things. So then to be made
to feel like they have to battle, they have to fight,
they have to prove things, it's just not a good
place to be in.
Speaker 2 (15:37):
It's ironic that parents that have to jump through the
hoops are the ones working really really hard to get
ahead of the game, to put out fires before they're
even lit. Melissa Stokes is a dedicated parent to both
her boys, but it's never ending.
Speaker 1 (15:52):
I'm always on it, like I always feel on it,
because you always on another thing. There's just been a
shortage of the ACTG medication in the country. I rang
twenty seven pharmacies to try and get our one, and
I just think, like, because why wouldn't I.
Speaker 2 (16:11):
I think you you will remember me in my desperate stage,
which lasted was up and down, but lasted years, and
I just thought I have got to try everything, do everything.
I cannot look back in ten years time and go
why didn't I get that diagnosis? And she kind of
fits the bill for all of them. But you know,
(16:32):
we sit there with all these letters finder name, and
they don't none of them describe her really.
Speaker 1 (16:36):
But what I have learned, and I think what you've learned,
is that we can only be their advocates because a
lot of kids aren't lucky enough to have that.
Speaker 2 (16:46):
Yeah, do you think about that a lot.
Speaker 1 (16:51):
I really didn't think i'd get upset. I'm sorry. I
didn't think i'd cry. I think, you God, it's just kids,
isn't it. You know, because I do look at a
lot of kids, or I hear of a lot of kids,
and you know, the similar ages who are only now
(17:12):
kind of getting diagnosed, and I think, Wow, you know,
how lucky were we that we identified or it was
identified so early, because we don't really have we're now
on this path. We've got all the experts, we've got.
Speaker 2 (17:25):
A few of the tools, and you've learned how to
advocate for him as well. Yeah, you know, we know
how to write an email in a way that will
achieve the best results, and you know, all these little things.
There is an element of playing the game.
Speaker 1 (17:40):
It's like when sometimes women go to the doctors and
they feel like they're not hurt. I feel like, with
you just got to keep fronting up. If you don't
even answer, you have to go again. They're not going
to answer that email, go in person, you know, ring
up on the phone. And yeah, and I mean that's
obviously in my nature because of what my job is
is that I'm not going to not get an answer.
(18:01):
I will just keep fronting up. And that's been probably
a blessing for us. Yeah, it's exhausting, though it is
quite exhausting.
Speaker 2 (18:11):
Melissa and I both have kids who, when they were younger,
were very easily dysregulated and had frequent meltdowns. Meltdowns are
not bad behavior and they're not bad parenting, but other
people don't necessarily see it that way.
Speaker 1 (18:27):
Everybody is not the same. Which even though I think
we say that like it's the obvious, but it's not.
And I think as a parent, most definitely you don't
often take that on board because there are so much
judgment of parenting. I think people that haven't had kids,
that you know, might have these moments where it's kind
(18:48):
of out of their control. A lot of the time,
you know, I just worry, like, oh, what they think
about how we're parenting, whereas they don't understand that this
is just kind of 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. Maybe don't be afraid to let people go,
(19:12):
you know, like I don't want to, but I think
sometimes you've got to keep other people almost out of
your business. Yeah yeah, good intention, people that are trying
to tell you what's wrong with your child or how
you could parent them better. I think sometimes you just
got to politely say this isn't your business, or you
(19:33):
just don't understand.
Speaker 2 (19:34):
Yeah, yeah, you do. And that's hard. It's because often
the situation is so intense that noise is it can
almost tip you over the edge.
Speaker 1 (19:46):
Just those moments where if you're invited somewhere or you're
going somewhere, I have a lot of anxiety over his
behavior or how he'll fit into the group, or you know,
will you be okay? Can I go for two hours
you know and sit there? Which is all Probably that's
all my anxiety though, because we go and he's generally fine.
(20:07):
I don't want to make out he's some kind of terror,
but you know, that's anxiety that I hold really kind
of deep, I guess from the really early days. But
I find that very hard to let go of now
that he's actually grown up and he has changed. He's
(20:30):
got a brain that works in such a kind of
exciting and curious way. But when it's not great, I'm
just like, oh, how did this happen? And it's back
to that, I guess, expectation and reality and the thing.
You think, oh, we're tracking along, we're tracking along, there's
nothing to worry about. It's nothing to worry about, and
then when something happens, you just think like shit, or
(20:55):
why didn't I deal with this before? Or why didn't
I see this coming, or why didn't I have that
in place to do with it at the time. Everything
with us, I think, kind of circles around to you go.
You know that he's good. Kind of the rest of
the family takes along really well. If you guys having
a moment, you know, Dave and I will start a
bit of you know, at each other because we still
(21:16):
really haven't worked out the best way to parent him,
and because I think that evolves all the time.
Speaker 2 (21:21):
Do you think that part of that is because there's
this conditioning that this is the best way to parent.
You know, there's a certain thing that you set boundaries
and you give you know, all the things that we
know and the ideas that you have before you're a parent,
and society pressures from society that are kind of even
if you don't necessarily want to follow them, you sort
(21:42):
of can't help yourself. Like there's all these conflicting kind
of of course.
Speaker 1 (21:46):
And you know, when you have kids, as you say,
your expectation versus reality can be so different. And then
you throw in that kind of ADHD on your diversity diagnosis,
and it is completely different.
Speaker 2 (22:02):
It is a completely different way of parenting. And I'm
like you, it's very hard to find what the right
way is. The right way is always changing because it's
almost like they need to feel safe, but they need
to be stretched, and that's different every time. And it's
just a a psychologist described it to me as a
PhD in parenting. Yeah, without doing the undergred, you're just
(22:25):
thrown in.
Speaker 1 (22:26):
But again that we're in a really great place at
the minute. For most of our time. Now, Hugo is
exceptional at school. He has a great time. Are our
morning's absolute shit? Yes? Can Hugo organize anything? No? His
last focus in the morning is wanting to get himself
(22:48):
ready for school. He's got a hundred other things that
he'd prefer to be doing. And then there's this wild
panic as he leaves the house, yelling. But that's how
our morning looks, you know. And we and it was
actually you who said you just have to accept it
that we don't look like other families in the morning.
Speaker 2 (23:07):
That is so funny. I didn't know I'd already said that, yeah,
and I was just going to say the thing is yeah.
But that's why it's so wonderful that you're talking, because
it helps other people go, oh, because you have this
picture that in every other household around the country, other
kids are just you know, getting dressed without being asked
(23:29):
and did it, you know, because nobody talks about it
when that's not the case.
Speaker 1 (23:35):
Hugo is such a sunny, bright you know person.
Speaker 2 (23:39):
Is he a happy kid.
Speaker 1 (23:40):
He's an extremely happy kid. You know, his smile like
breaks my heart.
Speaker 2 (23:45):
Yeah, just even listening to you talk, I'm like, I'm
so excited about he's.
Speaker 1 (23:52):
Gonna be mainly excited. Yeah, Hugo's a kind of kid
that would come in here, he'd look around, he'd take
it in, he'd go away. He might not come back
here for three months, but he would say, huh, you've
moved the pop plant.
Speaker 2 (24:05):
How many people even see the pot plant? That ability
to take it all in is a wonderful quality and
we need to celebrate it. And kids like Hugo.
Speaker 4 (24:17):
We were in deep shit. We were in really deep shit.
I've never really cried in my life. I'm not a
cry Then you sort of face the hardest thing you've
ever faced in your life. Oh my goodness, I've cried
enough to it for a lifetime.
Speaker 2 (24:30):
In last week's episode, Newstalk zb's Francesca Radkins spoke so
bravely about her daughter's crisis, which eventually led to an
ADHD diagnosis. That have since come out the other side,
and Francesca has some advice and some hope for those
in a similar position.
Speaker 4 (24:47):
You know, two years ago, I didn't know where we'd
be at, and I can quite honestly say we're in
a completely different place and my child is amazing and
incredible and doing so well. That is not to say
it is still not tough. Life is still really tough
for her, and it is a it is a roller coaster,
and it's still ups and downs, and we're still discovering
(25:08):
lots of things. I think what I'd really like to
say to appearance, especially if those whose children do hit
that wall have a breakdown of some sort. For two years,
for year nine and ten, my daughter was a serious truant.
I think we got a forty seven percent attendance one year,
at lower attendance the second year. And I felt this
(25:32):
sort of societal pressure and expectation I'd put on myself
that I needed my kid to be at school. They
have to be at school. The education is the most
important thing in the world.
Speaker 1 (25:44):
She's going to fall behind.
Speaker 4 (25:46):
This is a realnesshoe and the law, and it's the law, right,
So there's all this pressure on you as a parent.
And I felt embarrassed and guilty, and I was worried.
Tell you what, that's all gone now. We were very
fortunate to be to school. That understood that our daughter
(26:09):
couldn't come to school. It's not that she didn't want
to come to school. They understood the gravity of what
we were dealing with an ADHD diagnosis, serious anxiety and
heavy melancholy, as we like to call it in our house.
We then, you know, progressed. Things got better. The next year,
things got worse again. My daughter felt like she didn't
(26:31):
have all the pieces of the puzzle. So we did
more diagnostic work and there were more sensitivities that discovered,
and that really started to kind of put the puzzle
together and allow us to go, Okay, now we're really
understanding how this brain is working and everything we're dealing
with that you need. But you know, I discovered this
thing called graded exposure. So obviously the biggest concern if
(26:52):
your child isn't going to school is it's going to
be impossible to get them back to school. You want
them to be exposed to the thing that creates the
anxiety and the panic attacks and the fear and things
so that they can keep going. But actually it was
absolutely fine to stop and go, okay, what about you
go two mornings a week? Just do two classes. Then
the next week, hey, why don't you go three mornings
(27:13):
a week, And actually, to my daughter's credit, she did
that for a term, and then by the time she
got to the third term she said, I'm going back
full time. I'm ready to go. And she was good
to go. You know, she's in the right environment for
her and is able to learn and do everything she
wants and it did not matter that she missed essentially a.
Speaker 1 (27:32):
Year of school.
Speaker 2 (27:35):
I feel exactly the same way.
Speaker 4 (27:36):
Do not panic as a parent about the education. One
of the wonderful things that I have learned from my
daughter is how you get from A to B can
be so broad.
Speaker 2 (27:51):
As a researcher, Willow Sainsbury's used to being the one
to ask the questions, so at the end of our interview,
she grabbed the mic from me.
Speaker 5 (28:00):
I'm going to put this question back to you. Yeah,
what is the one thing in the last year that
you have felt really optimistic about in this space?
Speaker 2 (28:12):
Can I only pick one thing?
Speaker 5 (28:13):
No, you can pick three.
Speaker 2 (28:15):
I thank you you're such a teacher. I didn't I
meant that in a beautiful way. I term the passion
of so many people the I'm going to put this
into one passion, kindness, the number of people that really
(28:35):
genuinely want to make the world a better place for
those who think and experience things differently and are suffering,
they want to ease suffering. It just touches my heart.
And this project is so difficult, you know. I always
take on these difficult projects. But then I talk to
someone like you or young autistic girl I talked to
(28:57):
yesterday who just like it. Yeah, it's I think I
feel a little bit sorry for people that haven't encountered
neurodiversity or neurodivergence in this way because they miss out
on the beautiful, complex, different way of thinking. It's I
(29:17):
really you can see the ADHD in me coming out.
Speaker 1 (29:20):
A No, I love it.
Speaker 5 (29:21):
You've really nailed those last two. So I've.
Speaker 2 (29:26):
Next time on no such thing as normal? What is dyspraxia?
Speaker 5 (29:31):
So riding the bike was a big one.
Speaker 2 (29:33):
My great nad taught me how to ride a bike twice.
Speaker 5 (29:35):
I learned it, forgot it because I didn't do it enough.
Speaker 3 (29:37):
Then he retaught me how to learn it.
Speaker 2 (29:48):
If you like this podcast, please rate and review it.
It helps people find it. No such Thing as Normal
is produced and presented by me Sonia Gray. The editor
is Jamie Lee Smith, When O'Connor and Mitchell Hawks are
executive producers. Production assistant is the ex War and you
can find us on Instagram at No Such Thing as
(30:09):
Normal Podcast. The series is brought to you by the
New Zealand Herald and Team Uniform and it's made with
a support of New Zealand on air. New episodes of
No Such Thing As Normal are available wherever you get
your podcasts.
Tonight on One News, Dunedin's damage revealed.
Speaker 2 (00:05):
One News at six presenter Melissa Stokes has been a
beloved fixture on our screens for over twenty years.
Speaker 1 (00:11):
Benanto can't a good evening. Dunedin is now in recovery mode.
Speaker 2 (00:16):
She's brought us the big stories and the breaking news,
and she does it all with grace.
Speaker 1 (00:20):
Nine homes of red sticker boil.
Speaker 2 (00:23):
Water, even delivering the tough and terrifying news. Melissa's bibers.
Don't worry, guys, we got this.
Speaker 1 (00:29):
I have more on that later, but first, but.
Speaker 2 (00:32):
Behind the scenes, things aren't always composed. Melissa's oldest son, Hugo,
has ADHD and there is never a dill moment.
Speaker 1 (00:41):
Hugo is the wild ride to be a parent of.
He starts every morning like a energizer bunny, where he
jumps out of bed and yells in our very small house.
Speaker 3 (00:55):
Good morning New Zealand, Gelda.
Speaker 2 (01:07):
I'm Sonia Gray and this is no such thing as normal.
Series two. I'm 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 this series, you'll hear from experts and from many
wonderful people who experience the world in the unique way.
(01:30):
We're looking at neurodiversity from the inside. This is the
second of a two part look at parenting, and parenting
could be an entire series because it's a lot. The
(01:50):
constant appointments, the dreaded phone calls from the school, the
deep dive into alternative treatments, the panic when the only
brand of cheese your kid will eat is discontent. Knew
all of this, and then someone offers a helpful piece
of advice, like is it wise to give her sugar?
If a child's neurodifference isn't obvious, then it's often seen
(02:12):
as a choice. So if there are behavioral issues, the
autism or ADHD becomes the naughty kid and the bad parent.
Why is it still okay to shame and blame parents?
Speaker 1 (02:28):
Hugo has always just been full noise when people kept
telling us, Oh, he's the most talkative kid we've ever had,
or he's the most observant kid we've ever had, and
at first he kind of feel like, oh, well, that's
got to be a good thing, isn't it? And then
gradually we realized it's not not a good thing, but
there are things he needed help with so that his
(02:48):
world wasn't so big all the time?
Speaker 2 (02:51):
Does Melissa Stokes and I have a semi regular Saturday
evening date and TV and Z's make up. Whilst she's
getting made up to bring the latest news to the nation,
I'm getting made up to bring the latest Lotto numbers
to the nation. And over the noise of the blow dryers,
there is a lot of chat for Melissa and I.
The conversation often turns to our children there because we
(03:14):
both have kids who experienced the world in a very
different way. So what happened to make you guys go Okay,
maybe this is more than just a really active, boisterous cude.
Maybe we need some sort of intervention.
Speaker 4 (03:28):
Yeah.
Speaker 1 (03:28):
I can't remember the exact point, because, as you know,
you do feel like you traverse so many kind of
ups and downs. But he must have been in about
year three. His focus, I think in the classroom was
everywhere instead of being on the page in front of him,
So they were starting to identify things. You know, he
wasn't really finishing work. He was showing all the right
(03:49):
attitude but he just kind of couldn't didn't have the
focused again, there.
Speaker 2 (03:54):
Was sort of there was chaos, Yeah, because I think
the thing about a classroom is you kind of need
to be able to focus on that one thing the
teacher wants you to focus on at that time. Yes,
And as an ADHD, I know that you just don't
have control over what you want to focus on it,
especially as a kid.
Speaker 1 (04:09):
And we didn't realize that either. Obviously his focus was
so wide it was causing problems in his head as well.
And then it got to the point where the teachers
came to us and says, we actually think he's near
a breakdown, and so kind of to say that about
a six or seven year old kid that we really
(04:31):
think he is on the edge was really confronting. I
think his world had just got too big. His anxiety
got really bad about going to school and it had
turned into a really safe and happy place to a
place he didn't want to go to. And that's when
really we had to take action because it obviously you
(04:52):
don't want that and that was really upsetting.
Speaker 2 (04:55):
Yeah, how were you at that time?
Speaker 1 (04:57):
Ah? It was awful, you know, to cut it, but yeah,
it was awful at the time. Yeah, but it always is,
as you know, like how I always talk to you
about it because you think, ah, we've written this out,
but then there's always the next thing. Yeah.
Speaker 2 (05:12):
And the hard thing is that when you've had a
period of kind of stability for a while, yeah, then
you go down again. It's almost worse. How did you
find navigating the system help?
Speaker 1 (05:28):
For us, it was non existent in terms of public
help because even though we had you know, I think
a doctor and somebody else write a letter saying that
this kid was at breaking point, you know, it's six there,
we still didn't reach your threshold. So you know, gosh,
(05:49):
we're very fortunate that we can do it on our own.
And we found who I think you've actually had on
the podcast before, Lucy the Ot. We loved Lucy and
Lucy and she would come to.
Speaker 2 (06:02):
Lovely Lucy as an occupational therapist who shared her expert
advice in series one of this podcast. It can be
luck finding good people, and Melissa was lucky. That was
six years ago. A pediatrician had suggested Hugo have therapy
sessions with Lucy for six months, see how it went,
and maybe then come back to see her, and.
Speaker 1 (06:23):
So he went and worked with Lucy and on the
second session she said, I shouldn't really be you know,
this is not my job, but I think you'd benefit
from medication, and so for a person to see him.
After two sessions and we were meant to be there
for six months, she was like, I think you should
go back to our pediatrician. And we went back and
(06:45):
that's when that started. She kind of was, you know,
very clear he has ady EHG and he's probably got
other things as well, but she's like, we don't really
need to spend the money on that diagnosis. We know
that and we just work with it. Yeah.
Speaker 2 (07:02):
Yeah, you take the kid that's in front of you
and go what do they need?
Speaker 1 (07:06):
But Hugo is so different to any other kid I
know with ADHD. I just think they're all so different
that there isn't kind of one program or one expert
that I could go to for all the answers.
Speaker 2 (07:22):
Was it suggested to you that you do parenting courses?
Speaker 1 (07:24):
We were repeatedly told to go to parenting courses for
his behavior or for us to learn how to manage
his behavior. But I just could tell that they were
never going to be right for us. Yeah, maybe I
was wrong, but I just think I could tell the
gut feeling was it wasn't going to help.
Speaker 2 (07:44):
Gut advice is good advice. Often it's the best advice
when it comes to parenting because you are an expert
in your kid. But some of the systems in place
try and tell you repeatedly that you are not.
Speaker 5 (08:02):
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.
Speaker 2 (08:10):
That's educational psychologist Willow Sainsbury talking in last week's episode
about her research on the experience of parents in this system.
At the end of the study, she asked three questions,
what was helpful, what was unhelpful? And what would you
like to change about the diagnostic process? And the results
were pages and pages of writing. The main theme of
(08:32):
her final paper became.
Speaker 5 (08:34):
The battle Yeah, just so many a sense of adversarial conflict,
the war zone.
Speaker 2 (08:40):
Nice little yeah.
Speaker 5 (08:42):
But for me as a practitioner, one of the things
that enabled me to reflect was the discussion around parenting courses.
And I think this really struck me because when I
was working I would often recommend parents to go on
parenting courses, and you're going to take this opportunity to
(09:04):
apologize to any parents out there who I recommended going
on a parenting course, because I think parents, in what
they voiced about what was unhelpful is that when they
begin the diagnostic process for their child, they are carrying
so much guilt. Have they done everything they can as
(09:27):
a parent? What more can they do? They are told
it's not their fault, and then immediately it's recommended that
they go on a parenting course. And I think parents explain.
Speaker 3 (09:40):
To me.
Speaker 5 (09:42):
Just how that messaging was received. And I really didn't
have that perspective before that study, and very sage philosophical
parents writing, you know, we understand why a parenting course
is useful, but the timing of it, particularly before diagnosis,
before their child's been assessed, feels like it is a
(10:04):
gatekeeper for help for their children. So I just gained
a whole new perspective. And I think then that they
often went on to explain that the parenting courses also
weren't helpful for neurodivergent children, and that they were also
not taken into account the parent's own skill sets. So,
(10:26):
for example, one parent said I'm an early childhood educator
and you sent me on a parenting course, and it's
definitely changed the way I think of as a clinician.
Even though a parenting course is evidence based, think about
the timing, think about the way it's interpreted, and how
we could perhaps do that differently and work more collaboratively
(10:46):
with parents around what that might look like.
Speaker 2 (10:50):
I think if it's presented as part of a complete
protocol or complete plan, that would be easier. The problem
is kind of layer because you're right, you're already feeling
like a failure as a parent because your child is
very obviously not coping, And then it's kind of implied
(11:12):
that they agree with that, yes, because you need more
skills as a parent. Plus, in my case and in
many parents' cases, you're exhausted. So the idea of having
to go somewhere every Tuesday night from seven thirty to
nine thirty for eight weeks, how how will I find
the space to do that? Yeah, there are some great
(11:36):
parenting courses out there which especially tailored to parents of
neurodivergent kids. Will put some links to those in the
show notes. The battle is constant for all parents, But
(12:03):
if you're in a minority group, the system makes it
even tougher. Research has shown that certain biases still exist
and the barriers to getting diagnosis and support are very real.
It's risky for Mali Farno to seek diagnosis and support
for their kids. Willow Sainsbury's research highlighted the despair all
(12:23):
parents feel in the system, but as an educational psychologist,
she's experienced the risk factor that is very real for
minority groups.
Speaker 5 (12:34):
So families sharing with me a lack of trust in
the system. And actually, I think it's an incredible privilege
to get to that stage where actually families can say
that this system can be dangerous for us. It's also
layers of trauma of families having a sense of distrust
(12:56):
in terms of other sometimes direct experiences. And unfortunately, the
system is set up in such a way that quite
a few parents, I would venture to say, feel like
the system is a battle, that it's dangerous, that they're
constantly worried about labels being put on their children that
(13:18):
aren't right, and also labels on their family that aren't right.
Speaker 2 (13:22):
It's interesting, isn't it, Because we have to present all
the deficits when we are describing our child However, we
have to present zero deficits when we are describing our farno,
and I guess it would be easier to go, oh,
it's that for anybody, because the whole neurodiversity is so
(13:44):
difficult to quantify, I guess, and if you can just go, wow,
there was a messy divorce and that's why his behavior
is bad. But that's what worries me is that we
don't for some kids, we miss them because there is
something else going on, the be other things going on
with the faro.
Speaker 5 (14:03):
Yeah, I know exactly what you are describing.
Speaker 2 (14:07):
Thank you, because I felt like I explained that really badly.
Speaker 5 (14:10):
No, not at all. I think that what ends up happening.
And I'm going to give you the perspective from a clinician,
from an ed psyche perspective, you are also worried about
missing things. Are categories of neurodevelopmental conditions are far from perfect,
(14:31):
and actually working out exactly what is happening is really difficult. Now,
I would argue that it's a lot easier if you're
working in collaboration with the parents with a faro the
kid in front of you, and understanding from their perspective
what's happening. I think that parents often feel that they
(14:52):
need to play the game, that they need to present
the deficits of their child, jump through the hoops of
parenting courses. They understood how the system worked, but nonetheless,
couldn't it be done in a different way. If they've
got to the stage where they're saying, my child and
I need help, and then they should be viewed as
(15:16):
the parents that are thinking about it and have self
selected to be supported and that are good parents because
they're worried about these things. So then to be made
to feel like they have to battle, they have to fight,
they have to prove things, it's just not a good
place to be in.
Speaker 2 (15:37):
It's ironic that parents that have to jump through the
hoops are the ones working really really hard to get
ahead of the game, to put out fires before they're
even lit. Melissa Stokes is a dedicated parent to both
her boys, but it's never ending.
Speaker 1 (15:52):
I'm always on it, like I always feel on it,
because you always on another thing. There's just been a
shortage of the ACTG medication in the country. I rang
twenty seven pharmacies to try and get our one, and
I just think, like, because why wouldn't I.
Speaker 2 (16:11):
I think you you will remember me in my desperate stage,
which lasted was up and down, but lasted years, and
I just thought I have got to try everything, do everything.
I cannot look back in ten years time and go
why didn't I get that diagnosis? And she kind of
fits the bill for all of them. But you know,
(16:32):
we sit there with all these letters finder name, and
they don't none of them describe her really.
Speaker 1 (16:36):
But what I have learned, and I think what you've learned,
is that we can only be their advocates because a
lot of kids aren't lucky enough to have that.
Speaker 2 (16:46):
Yeah, do you think about that a lot.
Speaker 1 (16:51):
I really didn't think i'd get upset. I'm sorry. I
didn't think i'd cry. I think, you God, it's just kids,
isn't it. You know, because I do look at a
lot of kids, or I hear of a lot of kids,
and you know, the similar ages who are only now
(17:12):
kind of getting diagnosed, and I think, Wow, you know,
how lucky were we that we identified or it was
identified so early, because we don't really have we're now
on this path. We've got all the experts, we've got.
Speaker 2 (17:25):
A few of the tools, and you've learned how to
advocate for him as well. Yeah, you know, we know
how to write an email in a way that will
achieve the best results, and you know, all these little things.
There is an element of playing the game.
Speaker 1 (17:40):
It's like when sometimes women go to the doctors and
they feel like they're not hurt. I feel like, with
you just got to keep fronting up. If you don't
even answer, you have to go again. They're not going
to answer that email, go in person, you know, ring
up on the phone. And yeah, and I mean that's
obviously in my nature because of what my job is
is that I'm not going to not get an answer.
(18:01):
I will just keep fronting up. And that's been probably
a blessing for us. Yeah, it's exhausting, though it is
quite exhausting.
Speaker 2 (18:11):
Melissa and I both have kids who, when they were younger,
were very easily dysregulated and had frequent meltdowns. Meltdowns are
not bad behavior and they're not bad parenting, but other
people don't necessarily see it that way.
Speaker 1 (18:27):
Everybody is not the same. Which even though I think
we say that like it's the obvious, but it's not.
And I think as a parent, most definitely you don't
often take that on board because there are so much
judgment of parenting. I think people that haven't had kids,
that you know, might have these moments where it's kind
(18:48):
of out of their control. A lot of the time,
you know, I just worry, like, oh, what they think
about how we're parenting, whereas they don't understand that this
is just kind of 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. Maybe don't be afraid to let people go,
(19:12):
you know, like I don't want to, but I think
sometimes you've got to keep other people almost out of
your business. Yeah yeah, good intention, people that are trying
to tell you what's wrong with your child or how
you could parent them better. I think sometimes you just
got to politely say this isn't your business, or you
(19:33):
just don't understand.
Speaker 2 (19:34):
Yeah, yeah, you do. And that's hard. It's because often
the situation is so intense that noise is it can
almost tip you over the edge.
Speaker 1 (19:46):
Just those moments where if you're invited somewhere or you're
going somewhere, I have a lot of anxiety over his
behavior or how he'll fit into the group, or you know,
will you be okay? Can I go for two hours
you know and sit there? Which is all Probably that's
all my anxiety though, because we go and he's generally fine.
(20:07):
I don't want to make out he's some kind of terror,
but you know, that's anxiety that I hold really kind
of deep, I guess from the really early days. But
I find that very hard to let go of now
that he's actually grown up and he has changed. He's
(20:30):
got a brain that works in such a kind of
exciting and curious way. But when it's not great, I'm
just like, oh, how did this happen? And it's back
to that, I guess, expectation and reality and the thing.
You think, oh, we're tracking along, we're tracking along, there's
nothing to worry about. It's nothing to worry about, and
then when something happens, you just think like shit, or
(20:55):
why didn't I deal with this before? Or why didn't
I see this coming, or why didn't I have that
in place to do with it at the time. Everything
with us, I think, kind of circles around to you go.
You know that he's good. Kind of the rest of
the family takes along really well. If you guys having
a moment, you know, Dave and I will start a
bit of you know, at each other because we still
(21:16):
really haven't worked out the best way to parent him,
and because I think that evolves all the time.
Speaker 2 (21:21):
Do you think that part of that is because there's
this conditioning that this is the best way to parent.
You know, there's a certain thing that you set boundaries
and you give you know, all the things that we
know and the ideas that you have before you're a parent,
and society pressures from society that are kind of even
if you don't necessarily want to follow them, you sort
(21:42):
of can't help yourself. Like there's all these conflicting kind
of of course.
Speaker 1 (21:46):
And you know, when you have kids, as you say,
your expectation versus reality can be so different. And then
you throw in that kind of ADHD on your diversity diagnosis,
and it is completely different.
Speaker 2 (22:02):
It is a completely different way of parenting. And I'm
like you, it's very hard to find what the right
way is. The right way is always changing because it's
almost like they need to feel safe, but they need
to be stretched, and that's different every time. And it's
just a a psychologist described it to me as a
PhD in parenting. Yeah, without doing the undergred, you're just
(22:25):
thrown in.
Speaker 1 (22:26):
But again that we're in a really great place at
the minute. For most of our time. Now, Hugo is
exceptional at school. He has a great time. Are our
morning's absolute shit? Yes? Can Hugo organize anything? No? His
last focus in the morning is wanting to get himself
(22:48):
ready for school. He's got a hundred other things that
he'd prefer to be doing. And then there's this wild
panic as he leaves the house, yelling. But that's how
our morning looks, you know. And we and it was
actually you who said you just have to accept it
that we don't look like other families in the morning.
Speaker 2 (23:07):
That is so funny. I didn't know I'd already said that, yeah,
and I was just going to say the thing is yeah.
But that's why it's so wonderful that you're talking, because
it helps other people go, oh, because you have this
picture that in every other household around the country, other
kids are just you know, getting dressed without being asked
(23:29):
and did it, you know, because nobody talks about it
when that's not the case.
Speaker 1 (23:35):
Hugo is such a sunny, bright you know person.
Speaker 2 (23:39):
Is he a happy kid.
Speaker 1 (23:40):
He's an extremely happy kid. You know, his smile like
breaks my heart.
Speaker 2 (23:45):
Yeah, just even listening to you talk, I'm like, I'm
so excited about he's.
Speaker 1 (23:52):
Gonna be mainly excited. Yeah, Hugo's a kind of kid
that would come in here, he'd look around, he'd take
it in, he'd go away. He might not come back
here for three months, but he would say, huh, you've
moved the pop plant.
Speaker 2 (24:05):
How many people even see the pot plant? That ability
to take it all in is a wonderful quality and
we need to celebrate it. And kids like Hugo.
Speaker 4 (24:17):
We were in deep shit. We were in really deep shit.
I've never really cried in my life. I'm not a
cry Then you sort of face the hardest thing you've
ever faced in your life. Oh my goodness, I've cried
enough to it for a lifetime.
Speaker 2 (24:30):
In last week's episode, Newstalk zb's Francesca Radkins spoke so
bravely about her daughter's crisis, which eventually led to an
ADHD diagnosis. That have since come out the other side,
and Francesca has some advice and some hope for those
in a similar position.
Speaker 4 (24:47):
You know, two years ago, I didn't know where we'd
be at, and I can quite honestly say we're in
a completely different place and my child is amazing and
incredible and doing so well. That is not to say
it is still not tough. Life is still really tough
for her, and it is a it is a roller coaster,
and it's still ups and downs, and we're still discovering
(25:08):
lots of things. I think what I'd really like to
say to appearance, especially if those whose children do hit
that wall have a breakdown of some sort. For two years,
for year nine and ten, my daughter was a serious truant.
I think we got a forty seven percent attendance one year,
at lower attendance the second year. And I felt this
(25:32):
sort of societal pressure and expectation I'd put on myself
that I needed my kid to be at school. They
have to be at school. The education is the most
important thing in the world.
Speaker 1 (25:44):
She's going to fall behind.
Speaker 4 (25:46):
This is a realnesshoe and the law, and it's the law, right,
So there's all this pressure on you as a parent.
And I felt embarrassed and guilty, and I was worried.
Tell you what, that's all gone now. We were very
fortunate to be to school. That understood that our daughter
(26:09):
couldn't come to school. It's not that she didn't want
to come to school. They understood the gravity of what
we were dealing with an ADHD diagnosis, serious anxiety and
heavy melancholy, as we like to call it in our house.
We then, you know, progressed. Things got better. The next year,
things got worse again. My daughter felt like she didn't
(26:31):
have all the pieces of the puzzle. So we did
more diagnostic work and there were more sensitivities that discovered,
and that really started to kind of put the puzzle
together and allow us to go, Okay, now we're really
understanding how this brain is working and everything we're dealing
with that you need. But you know, I discovered this
thing called graded exposure. So obviously the biggest concern if
(26:52):
your child isn't going to school is it's going to
be impossible to get them back to school. You want
them to be exposed to the thing that creates the
anxiety and the panic attacks and the fear and things
so that they can keep going. But actually it was
absolutely fine to stop and go, okay, what about you
go two mornings a week? Just do two classes. Then
the next week, hey, why don't you go three mornings
(27:13):
a week, And actually, to my daughter's credit, she did
that for a term, and then by the time she
got to the third term she said, I'm going back
full time. I'm ready to go. And she was good
to go. You know, she's in the right environment for
her and is able to learn and do everything she
wants and it did not matter that she missed essentially a.
Speaker 1 (27:32):
Year of school.
Speaker 2 (27:35):
I feel exactly the same way.
Speaker 4 (27:36):
Do not panic as a parent about the education. One
of the wonderful things that I have learned from my
daughter is how you get from A to B can
be so broad.
Speaker 2 (27:51):
As a researcher, Willow Sainsbury's used to being the one
to ask the questions, so at the end of our interview,
she grabbed the mic from me.
Speaker 5 (28:00):
I'm going to put this question back to you. Yeah,
what is the one thing in the last year that
you have felt really optimistic about in this space?
Speaker 2 (28:12):
Can I only pick one thing?
Speaker 5 (28:13):
No, you can pick three.
Speaker 2 (28:15):
I thank you you're such a teacher. I didn't I
meant that in a beautiful way. I term the passion
of so many people the I'm going to put this
into one passion, kindness, the number of people that really
(28:35):
genuinely want to make the world a better place for
those who think and experience things differently and are suffering,
they want to ease suffering. It just touches my heart.
And this project is so difficult, you know. I always
take on these difficult projects. But then I talk to
someone like you or young autistic girl I talked to
(28:57):
yesterday who just like it. Yeah, it's I think I
feel a little bit sorry for people that haven't encountered
neurodiversity or neurodivergence in this way because they miss out
on the beautiful, complex, different way of thinking. It's I
(29:17):
really you can see the ADHD in me coming out.
Speaker 1 (29:20):
A No, I love it.
Speaker 5 (29:21):
You've really nailed those last two. So I've.
Speaker 2 (29:26):
Next time on no such thing as normal? What is dyspraxia?
Speaker 5 (29:31):
So riding the bike was a big one.
Speaker 2 (29:33):
My great nad taught me how to ride a bike twice.
Speaker 5 (29:35):
I learned it, forgot it because I didn't do it enough.
Speaker 3 (29:37):
Then he retaught me how to learn it.
Speaker 2 (29:48):
If you like this podcast, please rate and review it.
It helps people find it. No such Thing as Normal
is produced and presented by me Sonia Gray. The editor
is Jamie Lee Smith, When O'Connor and Mitchell Hawks are
executive producers. Production assistant is the ex War and you
can find us on Instagram at No Such Thing as
(30:09):
Normal Podcast. The series is brought to you by the
New Zealand Herald and Team Uniform and it's made with
a support of New Zealand on air. New episodes of
No Such Thing As Normal are available wherever you get
your podcasts.
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