March 23, 2025 • 30 mins
In today's episode, we explore the thoughtful discussion sparked by Hugh Van Cuylenburg's viral and emotional open letter about parenting his autistic child, and the mixed reactions across the country.
Dr Siobhan Lamb joins us with a valuable perspective. She is autistic, works as a Neurodevelopmental Educator, and is a parent to autistic children. She has been the parent, the teacher and the child. With warmth and insight, she helps bridge the gap between parents who felt seen by Hugh's message, and the adult autistic community who expressed concerns - and how we can move forward together.
Thank you to Dr Siobhan Lamb, from Developmental Paediatrics
Mamamia article 'What everyone's missing in the Hugh Van Cuylenburg story, as an autistic mum to autistic kids.'
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Hosts: Tegan Natoli, Annaliese Todd
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:10):
You're listening to a MoMA Mia podcast.
Speaker 2 (00:14):
Mamma Mia acknowledges the traditional owners of land and waters
that this podcast is recorded on.
Speaker 3 (00:24):
Hello and welcome to this glorious mess. We're embracing the
chaos together and ditching the judgment. I'm Anally's todd, single
parent to two tween age sons and lifestyle writer for
Mamma Mia, and i.
Speaker 2 (00:35):
Am taking to Tolly, mum of three primary school kids
and business operator runner all the hats you know to
run a business.
Speaker 3 (00:44):
So today on the show, we're reflecting on the response
to the viral video of the Imperfect podcast host Hugh
Van Kylenberg, where he was speaking about his child's autism
diagnosis and saying those powerful.
Speaker 4 (00:58):
Words the pain of being a parent an autistic child
is not the child, it's the world.
Speaker 2 (01:05):
In his emotional speech, he was brutally honest about the
challenges experienced in the three years since his child's diagnosis,
and there's since been a mixed bag.
Speaker 1 (01:15):
Of responses to his heartfelt open letter.
Speaker 3 (01:18):
And today we're going to be joined by doctor Chavon
Lamb for her unique perspective as a neurodevelopmental educator who
is autistic and a parent to autistic children. She has
sat in everyone's chair, the parent, the teacher, and the child.
We're going to be chatting about her response to Hugh's
open letter and her take on the divide in the response,
(01:41):
but first, here's what's happening in my group chat so
tigus last week, I think that Hugh's open letter was
in everyone's group chat around Australia.
Speaker 1 (01:53):
Definitely.
Speaker 3 (01:54):
I wanted to share the voice of one of the
mums in my group chat. In my Beautiful Mum group chat,
my friend Lou. Lou is a brilliant mum of four
and her youngest two kids are autistic, and here's her response.
Speaker 5 (02:10):
Hugh's letter and the video of him reading out the
letter really caught me by surprise.
Speaker 6 (02:17):
It really brought me undone.
Speaker 5 (02:18):
Actually, I have four children, the youngest two of which
are autistic, and I think Hugh was put into words
so much about how our journey has felt like. And
it sounds totally cliched and cheesy, but I really felt seen.
I think one of the bits that stood out for
me the most was when people ask you how you are,
(02:38):
and you can't really say I'm good because it's the
furthest thing from the truth. But the truth is too
much for anyone. You end up saying good because where
would you even start otherwise. It's isolated because not because
people don't want to understand. It's isolating because they just can't.
They can't really unless they're going through themselves. It's such
(03:03):
an impossible thing to try and communicate to people. So
I think we're a little other into the journey than you.
And one thing I honestly never thought i'd be able
to say, is it gets better. I look back at
myself probably five years ago, sobbing in my room, not
knowing how we could keep going, and I just want
(03:24):
to give me a hug and say things are going
to evolve. They're going to improve, They're going to progress.
You're going to learn more about your child, how better
to support them. They're going to get older, things will
change cognitively, they'll be different. It's still hard and incredibly
hard at times, but it'll be different. And I think,
(03:45):
probably most of all, I'd want to be able to
tell myself, just to be be a bit kinder to
myself that I'm doing my best, my husband's doing his best,
my kids are amazing human beings and that we should
never just compare ourselves to other families because they are
(04:05):
not us.
Speaker 2 (04:06):
We are.
Speaker 5 (04:08):
And I've learned really recalib that to celebrate wins that
are wins for us, even if they're not for the
world around us, and to celebrate my kids running their
own race in their own time. I just really want
to say thank you to you. I just it just
brought me to tears. And like I said, it's a
very isolating experience, and to hear someone so beautifully put
(04:29):
into words what you've experienced was just incredibly touching and
raw and brave.
Speaker 1 (04:36):
Wow, she sounds amazing. She is amazing.
Speaker 3 (04:40):
But because she's so like she's such a matriarch and
she's so tough, it just it broke my heart to
think five years ago and she was struggling and I
didn't know, Yeah, and I you know, we've been friends
for a long time. And I just but as I think,
even what she just said then is like, even if
you did know, you couldn't know, do you know what
I mean? But I feel like I've learned, like I
(05:01):
could have dropped some more Lasagnas over and there are
things that you do.
Speaker 1 (05:05):
Yeah, And I wish I'd done more.
Speaker 3 (05:07):
But if anything else, I think it's also made me
realize that we do need to support in other little ways. Yes,
and that's it, Like you might not understand what she's
going through every day in parenting, but that Lasagna could
be the difference of an easy afternoon or a tough one,
you know. And I think that it's such a beautiful,
(05:29):
genuine voice note and your friends and Hughes. I think
it's just really eye opening, especially for those without neurodivergent children.
Speaker 1 (05:38):
It gives us a big insight into what they.
Speaker 3 (05:40):
Go through, and it started a really important conversation and
put it in the spotlight, which I think is long overdue.
Speaker 1 (05:46):
And so thank you Lou for sharing. Thank you Lou,
and thank you Hugh.
Speaker 3 (05:51):
So after this short break, Tegus, we'll be diving into
my chat with Dr Lamb and her take on the
criticism and the divisive response to Hugh's open letter.
Speaker 1 (06:00):
That's next.
Speaker 3 (06:06):
Joining us today is doctor Chevron Lamb, a neurodevelopmental educator
at Developmental Pediatrics. She is an experienced teacher who's worked
for over twenty years in special education and hopes that
we can forge your world where neurodivergent children feel understood, heard,
and embraced for their strengths. She chatted with me last
(06:29):
week for an article I wrote on Mamma Mia, and
we wanted to share her unique perspective on the show today.
Welcome to this glorious mess, doctor Lamb.
Speaker 6 (06:39):
Thank you so much.
Speaker 1 (06:40):
So what was.
Speaker 3 (06:41):
Your initial reaction to Hughes video?
Speaker 4 (06:45):
It was incredibly heartfelt. I felt connected to him, which
I'm sure a lord of parents felt. He was very heartfelt,
loving and.
Speaker 3 (06:56):
War Yeah, and one of the things you mentioned I
loved was the duality of what he was saying, the
light and the shade.
Speaker 4 (07:04):
So he so well articulated the duality of hardships and
hope and light and dark, and that things can be
hard yet warm and wonderful at the same time. And
very few people manage to articulate that as well, that
(07:25):
duality of light and day. It's like, I don't know
if you ever saw it, but that movie Inside Out
when they teach you at the end that the balls
don't have to be one emotion.
Speaker 6 (07:37):
You can feel joy and anger at the same time.
He did that very well.
Speaker 3 (07:42):
Yeah, I love that analogy and I love that film too,
So can you share some insight into the reason for
the divide down the middle reaction and share the perspective
from the adult autistic community.
Speaker 4 (07:56):
So, firstly, can I say that there was a reaction
from the adult autistic community, but it's not homogeneous. So
a lot of autistic adults I've spoken to did enjoy
the video, but many that didn't. Adult autistics have gone
through many of us have gone through trauma ourselves. We
(08:18):
have been put through as children, maybe behavior therapy, maybe
things that have caused us trauma. Yeah, and the world
sort of non understanding us has caused us trauma, and
as a community, we want to make sure that doesn't
(08:39):
happen to our neuroking. We want to make sure that
doesn't happen to autistic children. And so we are trying
and adult autistics try to look after autistic kids.
Speaker 3 (08:54):
Yeah, there was this beautiful quote that you said in
the article that really struck a chord. You said, the
adult autistics aren't trying to judge you, as in the parents,
They're trying to help. It's just that harm was done
to them, and so they are trying to stop harm
being done to younger versions of them themselves.
Speaker 1 (09:11):
Like that just I totally get that.
Speaker 6 (09:14):
I said it very well that day. Indeed, Yes, and
that's exactly right.
Speaker 4 (09:20):
We are just trying to stop harm from being done
to younger versions of us two autistic kids, and sometimes
when you are overwhelmed and you've been traumatized, it's very
hard to moderate your reaction. But we then have the
(09:40):
parents on the other chair that they're sitting there at
that moment in time, not knowing how to help their
child and watching the world cause their child to struggle.
And this beautiful child that they adore that the rest
of the world should adore, they are saying struggle because
(10:04):
the world doesn't understand them. And what you get is
Milton's double m the problem where both parties weren't exactly
the same thing, which is the best outcome for the child.
But because they don't understand each other's experiences, they don't
(10:25):
understand each other's overwhelm they start to talk at each
other in a way they're not getting that they want.
Speaker 6 (10:36):
The same thing.
Speaker 2 (10:37):
Yeah.
Speaker 3 (10:38):
Absolutely, And your perspective is so unique because you are autistic,
but you've also been that parent, and you work with parents,
and you shared as well in the article a story
about what happened to you when you had really young kids.
Are you comfortable to talk about that again?
Speaker 6 (10:56):
Yeah, I'm more than happy.
Speaker 4 (10:58):
So when my son was just on four, we went
to all parents go through this, We went to the
park to get over that mid afternoon slump. You're a parent,
I'm sure you've experienced this mid afternoon slump of if
you stay home, the kids will get bored. Let's go
(11:19):
and do something. And so I took my kids to
the park. But in the park there was a lot
of noise, a lot of children, and a lot of
tourists that day as well, and so there was just
a lot of different groups of people and a lot
of noise.
Speaker 6 (11:35):
Which overwhelmed my small.
Speaker 4 (11:38):
Autistic child, and he started to have a meltdown. And
he started to have a meltdown just because of the
sensory impact like these his senses were just being bombarded.
But unfortunately, this park is surrounded by major roads, and I.
Speaker 6 (11:57):
Had a nearly two year old or two year old at.
Speaker 4 (12:00):
The same time, who decided that he might run towards one.
Speaker 6 (12:04):
Of these major vats.
Speaker 4 (12:07):
So I couldn't give all of my to coregulating my
four year old.
Speaker 6 (12:13):
So my four year old was struggling with his own senses.
Speaker 4 (12:17):
I couldn't be there for him in the way he
needed me to be because I had a two year
old I was trying to grab because he just doesn't
understand danger, of course, And as this is happening, this
lady comes up and starts yelling at me that I'm
abusing my child, and her yelling at me is causing
(12:39):
both my children, and one's autistic, one's not, but both
my children to disregulate because someone's yelling at their mother,
and so they're disregulating further. My regulation's not becoming very
good either, and I'm saying to her, look, everything's fine,
(13:00):
it's just that time of the afternoon, which.
Speaker 6 (13:03):
He now everyone calls it. I just need to.
Speaker 4 (13:06):
Get home, and she calls the police on me, and
by this time my regulation has just plummeted. It's too
much for me. And I'm standing there, going what am
I going to do? I can't get home. It's about
a fifteen minute walk and I can't get both my
kids home physically, And this lovely mother, who was a
(13:30):
couple of years above me at school, comes up and
says to the police when they get.
Speaker 6 (13:34):
There, I know the mom.
Speaker 4 (13:37):
I know the child, he's at my child's school, he's disabled.
Speaker 6 (13:42):
What would you like us to do? How can we
support her?
Speaker 4 (13:46):
And it was only because of her that the police
then turned around and said, you can have your son
on your lap. We'll drive you home so you don't
have to walk home. And the mother helped me get
into the car with as you know with children, I
had a PRAM and all that paraphernalia as well that
I'm trying to keep together, and the police drove me home.
(14:10):
I'll never forget that mother just didn't help me that day.
In subsequent days when things were feeling too much for me,
I used to take myself back to the support she
gave me, So she helped me on subsequent days. And
now I give that support to other people, So she
(14:30):
helped other people now through me.
Speaker 3 (14:33):
Yeah, because you were saying, it's about other parents who've
been down that same path, who are a little bit
ahead on their journey, and that's the support that people
need at that time, and why it's so important when
say Hugh came out and that he shared no matter
where he was on his journey, that we all support
him and each other at whatever place we're at.
Speaker 4 (14:56):
Absolutely and one of the biggest reasons for that is
as an autistic and as a parent to disabled kids,
I do not want people to pity me. I do
not want pity. I also do not want people to
judge me. Yeah, and it's very hard for people that
(15:21):
have never had my set of experiences that as an
autistic or as a parent of autistic kids to not
fall to one of.
Speaker 6 (15:32):
Those sides of the extreme.
Speaker 4 (15:34):
Whereas other parents they come without judgment or pity, just
support and autistics, even though sometimes it's misinterpreted by alistics,
they also are coming without judgment or pity, just support.
Speaker 6 (15:54):
Yeah, and that is what we need.
Speaker 3 (15:58):
Yeah, the double empathy. Everyone wants the same goal.
Speaker 6 (16:02):
Everyone want kids coming through for support.
Speaker 3 (16:05):
And to create a kind of world. Then definitely, I
mean we're not all the way there, but you know,
definitely from you know, thirty years ago, the path that
adult autistics had to pay for the kids now like
it is thankfully a different world from thirty years ago.
Speaker 6 (16:24):
And can I say something to that.
Speaker 4 (16:27):
One of the things about some of the pushback to
Hugh's video isn't just about Hughes video, It's about the
video after the video after the video for the last
thirty years that as autistics we have listened to and
heard and so it's about the climb of everything together.
Speaker 6 (16:53):
Yeah, not just peace.
Speaker 3 (16:56):
After this very shortbreak, Dr Lamb will be back with
us to discuss parenting neurodivergent children.
Speaker 1 (17:02):
That's next.
Speaker 3 (17:06):
One of the things I loved was your perspective that
in your house, you know when you had whatever diagnoses
that have come along with your children, that there it
wasn't negative, and that there's no negative narrative in your house,
and that you and your husband are role models to
your children.
Speaker 1 (17:25):
Can you share a bit about that.
Speaker 4 (17:28):
So I was diagnosed with ADHD when I was seven,
so I've grown up being neurodivergent, although that term wasn't
around then, but I've grown up being eurodivergent, being different
for one of a better word. I didn't speak until
I was seven or eight. I went to a deaf school.
Speaker 6 (17:49):
Oh my god, in the first few years.
Speaker 4 (17:51):
So it's it's an interesting pathway that I've been different.
And then my kids look at me and say, well,
that's mum. That's mum, and mum's successful and mum's a
great mum and mom loves us.
Speaker 6 (18:05):
So that's their normal.
Speaker 4 (18:09):
It's not that there was ever a narrative of This
isn't what I imagined, This isn't.
Speaker 6 (18:14):
What I thought. It is exactly what I thought. Yeah,
and it is me. So there's no negative, there's no
oh Jaez.
Speaker 4 (18:23):
Because they're autistic doesn't mean they I was asked one
day by a parent whose child was dying, and I'm
not having go at the parent when I say this,
just as an interest of Sometimes what gets asked to
me by a parent whose six year old had just
been diagnosed as autistic? Do you think they'll ever be
able to get married? I said, hopefully not at six,
(18:49):
and the parent looked at me. I said, who knows?
They have as much chance of getting married as the
person sitting next to them at the age of six.
Speaker 6 (18:58):
I don't know.
Speaker 3 (18:59):
But then also the same as everyone, there's a one
and two chances the marriage might.
Speaker 1 (19:02):
Lass no good.
Speaker 4 (19:05):
But yeah, and so parents, because they haven't been exposed
to the autistic world, they don't know what it is like.
The best advice I can give to every single parent
when your child is diagnosed is.
Speaker 6 (19:26):
Go onto communities with autistic adults.
Speaker 4 (19:29):
Start to listen to autistic adults read things from autistic adults,
and you will find that there is not a doom
and gloom story here. Yes, life can be difficult because
the world is set up for the majority, not for
the minority. And that's just because it's cheaper, I think.
But the world is set up for the majority. So
(19:52):
life can be difficult. But life can always also be fantastic.
Speaker 6 (19:55):
And there is no no.
Speaker 4 (20:00):
Neurology, no attribute anyone has that doesn't have disadvantages. I
was speaking to someone the other day that said, well,
if you are stunningly good looking, there's no disadvantage to that,
and I said, of course there is.
Speaker 6 (20:14):
You would have to deal with jealousy your entire life.
So there is a disadvantage to every advantage. Yeah, and
what we need to.
Speaker 4 (20:24):
Do is embrace both with equal vigor. So this is
what I am really good at. This is where I shine,
this is where I struggle. Now I'm going to set
up my environment on my child's environment as much as
I can, to place them where they shine the majority
(20:46):
of the time. But life happens, and sometimes that's not
where you can be. So when we know that you're
going to be in a place where it's just not
where you shine, you might struggle. That's where we put
in the supports.
Speaker 1 (21:02):
Yeah.
Speaker 3 (21:03):
And one of the things about your perspective that's so
unique is that you also work as an advocate in
skin s gouls, and so you've got such a great
understanding of the school systems and the struggles and all
the things that happen and that kids are up against.
As parents, how can we be having conversations with neurotypical
(21:24):
kids at home to really help foster a more inclusive environment.
Speaker 4 (21:30):
So helping kids, firstly, I'm going to make it very clear,
I don't support diagnoses.
Speaker 6 (21:40):
I support individuals. Yeah, so I.
Speaker 4 (21:43):
Can give you sort of generalized ways that I would
support children, but the way I would support your child
might not be like that, because I will meet your
child and actually.
Speaker 6 (21:55):
Work out where they are.
Speaker 4 (21:57):
And that's something I said in the article as well,
is support always needs to be where you are. So
we need to work out where you are in that
moment in time and embrace that there's nothing wrong or
right about it, it's just where you are, and then
we can move forward. But generalize support for kids. Firstly,
(22:19):
normalize it. Try and surround yourself as much as possible
with autistics ADHD is that they can relate to, that
they can see themselves as so not these stories of oh,
these phenomenal autistics. Look at Steve Jobs and Bill Gates
(22:42):
and Albert Einstein.
Speaker 6 (22:44):
Unfortunately most of us are never going to be the
Steve Jobs or Albert Einstein's of this world.
Speaker 4 (22:51):
We really need to surround ourselves with successful everyday people,
the doctor, the teacher, the uncle, the auntie. People they
love that are successful that they can envisage themselves as
down the line.
Speaker 3 (23:07):
Yeah, I had a beautiful mind with my son, and
I was reflecting, like how different it was when I
was in primary school, which was I don't know, thirty
odd years ago, and just the inclusivity. And I just
remember now upon reflection, they were naughty kids, but you're like, no,
(23:27):
I'm absolutely positive they would have been ADHD and that's
why they couldn't sit still in class. And the difference
in my son's reaction. They had some dress update at
school and I handed over a T shirt with a
banana on it, and he said the kid's name and
he said, oh, I can't wear that T shirt because
he's really scared of bananas. And so we don't eat
bananas in the class. We don't have them for crunch
(23:49):
and sip. And I don't want to wear that T
shirt because I don't want to make him feel uncomfortable.
And I thought, isn't that so beautiful that he had
that thought, and like that is just so different from, say,
thirty years ago, and how people would, you know, think
about a banana and caring about you know, that kid's
experience of really being distressed by nuns.
Speaker 6 (24:11):
I think that's wonderful.
Speaker 4 (24:12):
But I will say I was a child at school
too many years ago, more than thirty but I won't
say but more than thirty years ago.
Speaker 6 (24:21):
And I was very much supported when I was at school.
Speaker 4 (24:26):
My friends who are still my friends today, supported my difference.
And so I went to a deaf school two days
a week and a mainstream school three days a week,
and I didn't speak, and yet my friends looked after
me and watched out for me, and still to this
day we are friends.
Speaker 6 (24:44):
One of them was my maid of honor at my wedding.
Speaker 4 (24:47):
So it's so I don't think it was that bad
thirty years ago, but we're more aware that that's what
we should be aiming towards so not as reliant on
individuals now, but more as a society.
Speaker 6 (25:03):
That's where we should be aiming towards.
Speaker 2 (25:06):
Yeah.
Speaker 4 (25:07):
The other thing to support kids, so you normally eyes
by surrounding them.
Speaker 6 (25:12):
With people that they can look up to that are
like them.
Speaker 4 (25:17):
The next thing you do is read things as I said,
by autistic adults, read books by autistic kids, look for
their points of views, their narratives.
Speaker 6 (25:32):
And the last thing is every child that comes to.
Speaker 4 (25:35):
Me, I run them through some screeners for where their
strengths are and where their challenges are.
Speaker 6 (25:42):
And explain to kids, we all have strength and challenges.
Speaker 4 (25:45):
It doesn't matter if you're autistic, if you have ADHD,
it doesn't matter if you've got blonde hair, brown hair.
At the end of the day, every single human have
strength and challenges. And the most successful people are the
ones that understand themselves, are completely aware of who they
are and are happy with who they are, even the
(26:08):
things they might not like about themselves.
Speaker 6 (26:12):
They understand it.
Speaker 4 (26:15):
Because then we can then identify, Okay, this is who
I am, this is my strengths. We can then identify
environments that suit us the support needs we might have
when our challenges happen, and that awareness without judgment is
what every single one of us need. So do I
judge yourself, be kind on yourself.
Speaker 3 (26:36):
For any parents who are listening, who might be on
the start of their journey. You gave some beautiful advice
in the article, and I would love it if you
re shared it. It was the getting rid of shoulds
and shame now.
Speaker 6 (26:52):
So fortunately for parents who.
Speaker 4 (26:58):
Are not already part of us, say my world, but
part of the neurodivergent world, when their children get diagnosed,
there is this process of did I do some thing wrong?
Speaker 6 (27:11):
Am I a bad parent? Have I caused this? Should
I have done this differently? Should I have done that?
Get rid of it all.
Speaker 4 (27:21):
Maya Angelo has a wonderful quote that says, when you
know better, do better.
Speaker 6 (27:27):
Yeah, no regret.
Speaker 4 (27:29):
As long as every decision you make for your child
is made with love, which I am sure every parents are.
You have made the right decision at that moment in time.
Feel confident about that, and then when new information comes
to you be able to pivot, but pivot without shame,
without judgment towards yourself. You made the right decision five
(27:53):
seconds ago. You now have more information we pivot and
make a different decision. No shame, no shoulds, because all
they will do is cloud your mind and not enable.
Speaker 6 (28:07):
You to pivot. They will stick you in the mud.
Speaker 4 (28:10):
They will make you yourself go into a shame spiral,
which will stop you from helping both your.
Speaker 6 (28:16):
Child and your family. Yeah, one of the saddest things
that I see is again this double empathy problem.
Speaker 4 (28:25):
But when everyone is anxious, we tend to start turning
on each other. I see parents turn on schools. Schools
turn on parents. I see people turn on doctors. I
see autistics turn on parents. Parents turn on autistics. And
it's because we are all overwhelmed and we are all stressed.
(28:51):
We need to walk into every situation assuming good intentions
and competence. Every day you're walking to your child's school,
assume that teachers care about your children and are competent,
and they will do the same to you, and we
will do that same to each other. And that's how
(29:11):
we will be opening conversations, not hide things, and really
move the world forward to support our children.
Speaker 3 (29:23):
Chavon, I've enjoyed getting to know you so much this week.
Thank you so much for your time.
Speaker 6 (29:28):
Thank you so much, Thank you.
Speaker 1 (29:31):
Wow, what an amazing woman, person human. Yes, what a story.
Speaker 3 (29:36):
I learned so much from her this week. And then
also I've just loved being able.
Speaker 1 (29:42):
To share her perspective.
Speaker 3 (29:43):
Yes, it's so unique, so unique, and just so powerful.
Speaker 2 (29:47):
Well, thank you Dr Lamb and a Alisa that lovely interview,
and thank you all for listening to this glorious mess.
We hope you have enjoyed the episode. Feel free to
leave us a raging all of you if you.
Speaker 3 (29:57):
Love the show, and we'll be sharing a link to
the article as well with Chavonne or Dr Lamb in
the show notes. And please keep sharing with us on
the Muma mea Family Facebook page and Mama mea Family
in Instagram and leave us a message. All the options
are in the show notes.
Speaker 1 (30:13):
This episode was produced by Tina Mattlow. See you next week,
See you next time.
You're listening to a MoMA Mia podcast.
Speaker 2 (00:14):
Mamma Mia acknowledges the traditional owners of land and waters
that this podcast is recorded on.
Speaker 3 (00:24):
Hello and welcome to this glorious mess. We're embracing the
chaos together and ditching the judgment. I'm Anally's todd, single
parent to two tween age sons and lifestyle writer for
Mamma Mia, and i.
Speaker 2 (00:35):
Am taking to Tolly, mum of three primary school kids
and business operator runner all the hats you know to
run a business.
Speaker 3 (00:44):
So today on the show, we're reflecting on the response
to the viral video of the Imperfect podcast host Hugh
Van Kylenberg, where he was speaking about his child's autism
diagnosis and saying those powerful.
Speaker 4 (00:58):
Words the pain of being a parent an autistic child
is not the child, it's the world.
Speaker 2 (01:05):
In his emotional speech, he was brutally honest about the
challenges experienced in the three years since his child's diagnosis,
and there's since been a mixed bag.
Speaker 1 (01:15):
Of responses to his heartfelt open letter.
Speaker 3 (01:18):
And today we're going to be joined by doctor Chavon
Lamb for her unique perspective as a neurodevelopmental educator who
is autistic and a parent to autistic children. She has
sat in everyone's chair, the parent, the teacher, and the child.
We're going to be chatting about her response to Hugh's
open letter and her take on the divide in the response,
(01:41):
but first, here's what's happening in my group chat so
tigus last week, I think that Hugh's open letter was
in everyone's group chat around Australia.
Speaker 1 (01:53):
Definitely.
Speaker 3 (01:54):
I wanted to share the voice of one of the
mums in my group chat. In my Beautiful Mum group chat,
my friend Lou. Lou is a brilliant mum of four
and her youngest two kids are autistic, and here's her response.
Speaker 5 (02:10):
Hugh's letter and the video of him reading out the
letter really caught me by surprise.
Speaker 6 (02:17):
It really brought me undone.
Speaker 5 (02:18):
Actually, I have four children, the youngest two of which
are autistic, and I think Hugh was put into words
so much about how our journey has felt like. And
it sounds totally cliched and cheesy, but I really felt seen.
I think one of the bits that stood out for
me the most was when people ask you how you are,
(02:38):
and you can't really say I'm good because it's the
furthest thing from the truth. But the truth is too
much for anyone. You end up saying good because where
would you even start otherwise. It's isolated because not because
people don't want to understand. It's isolating because they just can't.
They can't really unless they're going through themselves. It's such
(03:03):
an impossible thing to try and communicate to people. So
I think we're a little other into the journey than you.
And one thing I honestly never thought i'd be able
to say, is it gets better. I look back at
myself probably five years ago, sobbing in my room, not
knowing how we could keep going, and I just want
(03:24):
to give me a hug and say things are going
to evolve. They're going to improve, They're going to progress.
You're going to learn more about your child, how better
to support them. They're going to get older, things will
change cognitively, they'll be different. It's still hard and incredibly
hard at times, but it'll be different. And I think,
(03:45):
probably most of all, I'd want to be able to
tell myself, just to be be a bit kinder to
myself that I'm doing my best, my husband's doing his best,
my kids are amazing human beings and that we should
never just compare ourselves to other families because they are
(04:05):
not us.
Speaker 2 (04:06):
We are.
Speaker 5 (04:08):
And I've learned really recalib that to celebrate wins that
are wins for us, even if they're not for the
world around us, and to celebrate my kids running their
own race in their own time. I just really want
to say thank you to you. I just it just
brought me to tears. And like I said, it's a
very isolating experience, and to hear someone so beautifully put
(04:29):
into words what you've experienced was just incredibly touching and
raw and brave.
Speaker 1 (04:36):
Wow, she sounds amazing. She is amazing.
Speaker 3 (04:40):
But because she's so like she's such a matriarch and
she's so tough, it just it broke my heart to
think five years ago and she was struggling and I
didn't know, Yeah, and I you know, we've been friends
for a long time. And I just but as I think,
even what she just said then is like, even if
you did know, you couldn't know, do you know what
I mean? But I feel like I've learned, like I
(05:01):
could have dropped some more Lasagnas over and there are
things that you do.
Speaker 1 (05:05):
Yeah, And I wish I'd done more.
Speaker 3 (05:07):
But if anything else, I think it's also made me
realize that we do need to support in other little ways. Yes,
and that's it, Like you might not understand what she's
going through every day in parenting, but that Lasagna could
be the difference of an easy afternoon or a tough one,
you know. And I think that it's such a beautiful,
(05:29):
genuine voice note and your friends and Hughes. I think
it's just really eye opening, especially for those without neurodivergent children.
Speaker 1 (05:38):
It gives us a big insight into what they.
Speaker 3 (05:40):
Go through, and it started a really important conversation and
put it in the spotlight, which I think is long overdue.
Speaker 1 (05:46):
And so thank you Lou for sharing. Thank you Lou,
and thank you Hugh.
Speaker 3 (05:51):
So after this short break, Tegus, we'll be diving into
my chat with Dr Lamb and her take on the
criticism and the divisive response to Hugh's open letter.
Speaker 1 (06:00):
That's next.
Speaker 3 (06:06):
Joining us today is doctor Chevron Lamb, a neurodevelopmental educator
at Developmental Pediatrics. She is an experienced teacher who's worked
for over twenty years in special education and hopes that
we can forge your world where neurodivergent children feel understood, heard,
and embraced for their strengths. She chatted with me last
(06:29):
week for an article I wrote on Mamma Mia, and
we wanted to share her unique perspective on the show today.
Welcome to this glorious mess, doctor Lamb.
Speaker 6 (06:39):
Thank you so much.
Speaker 1 (06:40):
So what was.
Speaker 3 (06:41):
Your initial reaction to Hughes video?
Speaker 4 (06:45):
It was incredibly heartfelt. I felt connected to him, which
I'm sure a lord of parents felt. He was very heartfelt,
loving and.
Speaker 3 (06:56):
War Yeah, and one of the things you mentioned I
loved was the duality of what he was saying, the
light and the shade.
Speaker 4 (07:04):
So he so well articulated the duality of hardships and
hope and light and dark, and that things can be
hard yet warm and wonderful at the same time. And
very few people manage to articulate that as well, that
(07:25):
duality of light and day. It's like, I don't know
if you ever saw it, but that movie Inside Out
when they teach you at the end that the balls
don't have to be one emotion.
Speaker 6 (07:37):
You can feel joy and anger at the same time.
He did that very well.
Speaker 3 (07:42):
Yeah, I love that analogy and I love that film too,
So can you share some insight into the reason for
the divide down the middle reaction and share the perspective
from the adult autistic community.
Speaker 4 (07:56):
So, firstly, can I say that there was a reaction
from the adult autistic community, but it's not homogeneous. So
a lot of autistic adults I've spoken to did enjoy
the video, but many that didn't. Adult autistics have gone
through many of us have gone through trauma ourselves. We
(08:18):
have been put through as children, maybe behavior therapy, maybe
things that have caused us trauma. Yeah, and the world
sort of non understanding us has caused us trauma, and
as a community, we want to make sure that doesn't
(08:39):
happen to our neuroking. We want to make sure that
doesn't happen to autistic children. And so we are trying
and adult autistics try to look after autistic kids.
Speaker 3 (08:54):
Yeah, there was this beautiful quote that you said in
the article that really struck a chord. You said, the
adult autistics aren't trying to judge you, as in the parents,
They're trying to help. It's just that harm was done
to them, and so they are trying to stop harm
being done to younger versions of them themselves.
Speaker 1 (09:11):
Like that just I totally get that.
Speaker 6 (09:14):
I said it very well that day. Indeed, Yes, and
that's exactly right.
Speaker 4 (09:20):
We are just trying to stop harm from being done
to younger versions of us two autistic kids, and sometimes
when you are overwhelmed and you've been traumatized, it's very
hard to moderate your reaction. But we then have the
(09:40):
parents on the other chair that they're sitting there at
that moment in time, not knowing how to help their
child and watching the world cause their child to struggle.
And this beautiful child that they adore that the rest
of the world should adore, they are saying struggle because
(10:04):
the world doesn't understand them. And what you get is
Milton's double m the problem where both parties weren't exactly
the same thing, which is the best outcome for the child.
But because they don't understand each other's experiences, they don't
(10:25):
understand each other's overwhelm they start to talk at each
other in a way they're not getting that they want.
Speaker 6 (10:36):
The same thing.
Speaker 2 (10:37):
Yeah.
Speaker 3 (10:38):
Absolutely, And your perspective is so unique because you are autistic,
but you've also been that parent, and you work with parents,
and you shared as well in the article a story
about what happened to you when you had really young kids.
Are you comfortable to talk about that again?
Speaker 6 (10:56):
Yeah, I'm more than happy.
Speaker 4 (10:58):
So when my son was just on four, we went
to all parents go through this, We went to the
park to get over that mid afternoon slump. You're a parent,
I'm sure you've experienced this mid afternoon slump of if
you stay home, the kids will get bored. Let's go
(11:19):
and do something. And so I took my kids to
the park. But in the park there was a lot
of noise, a lot of children, and a lot of
tourists that day as well, and so there was just
a lot of different groups of people and a lot
of noise.
Speaker 6 (11:35):
Which overwhelmed my small.
Speaker 4 (11:38):
Autistic child, and he started to have a meltdown. And
he started to have a meltdown just because of the
sensory impact like these his senses were just being bombarded.
But unfortunately, this park is surrounded by major roads, and I.
Speaker 6 (11:57):
Had a nearly two year old or two year old at.
Speaker 4 (12:00):
The same time, who decided that he might run towards one.
Speaker 6 (12:04):
Of these major vats.
Speaker 4 (12:07):
So I couldn't give all of my to coregulating my
four year old.
Speaker 6 (12:13):
So my four year old was struggling with his own senses.
Speaker 4 (12:17):
I couldn't be there for him in the way he
needed me to be because I had a two year
old I was trying to grab because he just doesn't
understand danger, of course, And as this is happening, this
lady comes up and starts yelling at me that I'm
abusing my child, and her yelling at me is causing
(12:39):
both my children, and one's autistic, one's not, but both
my children to disregulate because someone's yelling at their mother,
and so they're disregulating further. My regulation's not becoming very
good either, and I'm saying to her, look, everything's fine,
(13:00):
it's just that time of the afternoon, which.
Speaker 6 (13:03):
He now everyone calls it. I just need to.
Speaker 4 (13:06):
Get home, and she calls the police on me, and
by this time my regulation has just plummeted. It's too
much for me. And I'm standing there, going what am
I going to do? I can't get home. It's about
a fifteen minute walk and I can't get both my
kids home physically, And this lovely mother, who was a
(13:30):
couple of years above me at school, comes up and
says to the police when they get.
Speaker 6 (13:34):
There, I know the mom.
Speaker 4 (13:37):
I know the child, he's at my child's school, he's disabled.
Speaker 6 (13:42):
What would you like us to do? How can we
support her?
Speaker 4 (13:46):
And it was only because of her that the police
then turned around and said, you can have your son
on your lap. We'll drive you home so you don't
have to walk home. And the mother helped me get
into the car with as you know with children, I
had a PRAM and all that paraphernalia as well that
I'm trying to keep together, and the police drove me home.
(14:10):
I'll never forget that mother just didn't help me that day.
In subsequent days when things were feeling too much for me,
I used to take myself back to the support she
gave me, So she helped me on subsequent days. And
now I give that support to other people, So she
(14:30):
helped other people now through me.
Speaker 3 (14:33):
Yeah, because you were saying, it's about other parents who've
been down that same path, who are a little bit
ahead on their journey, and that's the support that people
need at that time, and why it's so important when
say Hugh came out and that he shared no matter
where he was on his journey, that we all support
him and each other at whatever place we're at.
Speaker 4 (14:56):
Absolutely and one of the biggest reasons for that is
as an autistic and as a parent to disabled kids,
I do not want people to pity me. I do
not want pity. I also do not want people to
judge me. Yeah, and it's very hard for people that
(15:21):
have never had my set of experiences that as an
autistic or as a parent of autistic kids to not
fall to one of.
Speaker 6 (15:32):
Those sides of the extreme.
Speaker 4 (15:34):
Whereas other parents they come without judgment or pity, just
support and autistics, even though sometimes it's misinterpreted by alistics,
they also are coming without judgment or pity, just support.
Speaker 6 (15:54):
Yeah, and that is what we need.
Speaker 3 (15:58):
Yeah, the double empathy. Everyone wants the same goal.
Speaker 6 (16:02):
Everyone want kids coming through for support.
Speaker 3 (16:05):
And to create a kind of world. Then definitely, I
mean we're not all the way there, but you know,
definitely from you know, thirty years ago, the path that
adult autistics had to pay for the kids now like
it is thankfully a different world from thirty years ago.
Speaker 6 (16:24):
And can I say something to that.
Speaker 4 (16:27):
One of the things about some of the pushback to
Hugh's video isn't just about Hughes video, It's about the
video after the video after the video for the last
thirty years that as autistics we have listened to and
heard and so it's about the climb of everything together.
Speaker 6 (16:53):
Yeah, not just peace.
Speaker 3 (16:56):
After this very shortbreak, Dr Lamb will be back with
us to discuss parenting neurodivergent children.
Speaker 1 (17:02):
That's next.
Speaker 3 (17:06):
One of the things I loved was your perspective that
in your house, you know when you had whatever diagnoses
that have come along with your children, that there it
wasn't negative, and that there's no negative narrative in your house,
and that you and your husband are role models to
your children.
Speaker 1 (17:25):
Can you share a bit about that.
Speaker 4 (17:28):
So I was diagnosed with ADHD when I was seven,
so I've grown up being neurodivergent, although that term wasn't
around then, but I've grown up being eurodivergent, being different
for one of a better word. I didn't speak until
I was seven or eight. I went to a deaf school.
Speaker 6 (17:49):
Oh my god, in the first few years.
Speaker 4 (17:51):
So it's it's an interesting pathway that I've been different.
And then my kids look at me and say, well,
that's mum. That's mum, and mum's successful and mum's a
great mum and mom loves us.
Speaker 6 (18:05):
So that's their normal.
Speaker 4 (18:09):
It's not that there was ever a narrative of This
isn't what I imagined, This isn't.
Speaker 6 (18:14):
What I thought. It is exactly what I thought. Yeah,
and it is me. So there's no negative, there's no
oh Jaez.
Speaker 4 (18:23):
Because they're autistic doesn't mean they I was asked one
day by a parent whose child was dying, and I'm
not having go at the parent when I say this,
just as an interest of Sometimes what gets asked to
me by a parent whose six year old had just
been diagnosed as autistic? Do you think they'll ever be
able to get married? I said, hopefully not at six,
(18:49):
and the parent looked at me. I said, who knows?
They have as much chance of getting married as the
person sitting next to them at the age of six.
Speaker 6 (18:58):
I don't know.
Speaker 3 (18:59):
But then also the same as everyone, there's a one
and two chances the marriage might.
Speaker 1 (19:02):
Lass no good.
Speaker 4 (19:05):
But yeah, and so parents, because they haven't been exposed
to the autistic world, they don't know what it is like.
The best advice I can give to every single parent
when your child is diagnosed is.
Speaker 6 (19:26):
Go onto communities with autistic adults.
Speaker 4 (19:29):
Start to listen to autistic adults read things from autistic adults,
and you will find that there is not a doom
and gloom story here. Yes, life can be difficult because
the world is set up for the majority, not for
the minority. And that's just because it's cheaper, I think.
But the world is set up for the majority. So
(19:52):
life can be difficult. But life can always also be fantastic.
Speaker 6 (19:55):
And there is no no.
Speaker 4 (20:00):
Neurology, no attribute anyone has that doesn't have disadvantages. I
was speaking to someone the other day that said, well,
if you are stunningly good looking, there's no disadvantage to that,
and I said, of course there is.
Speaker 6 (20:14):
You would have to deal with jealousy your entire life.
So there is a disadvantage to every advantage. Yeah, and
what we need to.
Speaker 4 (20:24):
Do is embrace both with equal vigor. So this is
what I am really good at. This is where I shine,
this is where I struggle. Now I'm going to set
up my environment on my child's environment as much as
I can, to place them where they shine the majority
(20:46):
of the time. But life happens, and sometimes that's not
where you can be. So when we know that you're
going to be in a place where it's just not
where you shine, you might struggle. That's where we put
in the supports.
Speaker 1 (21:02):
Yeah.
Speaker 3 (21:03):
And one of the things about your perspective that's so
unique is that you also work as an advocate in
skin s gouls, and so you've got such a great
understanding of the school systems and the struggles and all
the things that happen and that kids are up against.
As parents, how can we be having conversations with neurotypical
(21:24):
kids at home to really help foster a more inclusive environment.
Speaker 4 (21:30):
So helping kids, firstly, I'm going to make it very clear,
I don't support diagnoses.
Speaker 6 (21:40):
I support individuals. Yeah, so I.
Speaker 4 (21:43):
Can give you sort of generalized ways that I would
support children, but the way I would support your child
might not be like that, because I will meet your
child and actually.
Speaker 6 (21:55):
Work out where they are.
Speaker 4 (21:57):
And that's something I said in the article as well,
is support always needs to be where you are. So
we need to work out where you are in that
moment in time and embrace that there's nothing wrong or
right about it, it's just where you are, and then
we can move forward. But generalize support for kids. Firstly,
(22:19):
normalize it. Try and surround yourself as much as possible
with autistics ADHD is that they can relate to, that
they can see themselves as so not these stories of oh,
these phenomenal autistics. Look at Steve Jobs and Bill Gates
(22:42):
and Albert Einstein.
Speaker 6 (22:44):
Unfortunately most of us are never going to be the
Steve Jobs or Albert Einstein's of this world.
Speaker 4 (22:51):
We really need to surround ourselves with successful everyday people,
the doctor, the teacher, the uncle, the auntie. People they
love that are successful that they can envisage themselves as
down the line.
Speaker 3 (23:07):
Yeah, I had a beautiful mind with my son, and
I was reflecting, like how different it was when I
was in primary school, which was I don't know, thirty
odd years ago, and just the inclusivity. And I just
remember now upon reflection, they were naughty kids, but you're like, no,
(23:27):
I'm absolutely positive they would have been ADHD and that's
why they couldn't sit still in class. And the difference
in my son's reaction. They had some dress update at
school and I handed over a T shirt with a
banana on it, and he said the kid's name and
he said, oh, I can't wear that T shirt because
he's really scared of bananas. And so we don't eat
bananas in the class. We don't have them for crunch
(23:49):
and sip. And I don't want to wear that T
shirt because I don't want to make him feel uncomfortable.
And I thought, isn't that so beautiful that he had
that thought, and like that is just so different from, say,
thirty years ago, and how people would, you know, think
about a banana and caring about you know, that kid's
experience of really being distressed by nuns.
Speaker 6 (24:11):
I think that's wonderful.
Speaker 4 (24:12):
But I will say I was a child at school
too many years ago, more than thirty but I won't
say but more than thirty years ago.
Speaker 6 (24:21):
And I was very much supported when I was at school.
Speaker 4 (24:26):
My friends who are still my friends today, supported my difference.
And so I went to a deaf school two days
a week and a mainstream school three days a week,
and I didn't speak, and yet my friends looked after
me and watched out for me, and still to this
day we are friends.
Speaker 6 (24:44):
One of them was my maid of honor at my wedding.
Speaker 4 (24:47):
So it's so I don't think it was that bad
thirty years ago, but we're more aware that that's what
we should be aiming towards so not as reliant on
individuals now, but more as a society.
Speaker 6 (25:03):
That's where we should be aiming towards.
Speaker 2 (25:06):
Yeah.
Speaker 4 (25:07):
The other thing to support kids, so you normally eyes
by surrounding them.
Speaker 6 (25:12):
With people that they can look up to that are
like them.
Speaker 4 (25:17):
The next thing you do is read things as I said,
by autistic adults, read books by autistic kids, look for
their points of views, their narratives.
Speaker 6 (25:32):
And the last thing is every child that comes to.
Speaker 4 (25:35):
Me, I run them through some screeners for where their
strengths are and where their challenges are.
Speaker 6 (25:42):
And explain to kids, we all have strength and challenges.
Speaker 4 (25:45):
It doesn't matter if you're autistic, if you have ADHD,
it doesn't matter if you've got blonde hair, brown hair.
At the end of the day, every single human have
strength and challenges. And the most successful people are the
ones that understand themselves, are completely aware of who they
are and are happy with who they are, even the
(26:08):
things they might not like about themselves.
Speaker 6 (26:12):
They understand it.
Speaker 4 (26:15):
Because then we can then identify, Okay, this is who
I am, this is my strengths. We can then identify
environments that suit us the support needs we might have
when our challenges happen, and that awareness without judgment is
what every single one of us need. So do I
judge yourself, be kind on yourself.
Speaker 3 (26:36):
For any parents who are listening, who might be on
the start of their journey. You gave some beautiful advice
in the article, and I would love it if you
re shared it. It was the getting rid of shoulds
and shame now.
Speaker 6 (26:52):
So fortunately for parents who.
Speaker 4 (26:58):
Are not already part of us, say my world, but
part of the neurodivergent world, when their children get diagnosed,
there is this process of did I do some thing wrong?
Speaker 6 (27:11):
Am I a bad parent? Have I caused this? Should
I have done this differently? Should I have done that?
Get rid of it all.
Speaker 4 (27:21):
Maya Angelo has a wonderful quote that says, when you
know better, do better.
Speaker 6 (27:27):
Yeah, no regret.
Speaker 4 (27:29):
As long as every decision you make for your child
is made with love, which I am sure every parents are.
You have made the right decision at that moment in time.
Feel confident about that, and then when new information comes
to you be able to pivot, but pivot without shame,
without judgment towards yourself. You made the right decision five
(27:53):
seconds ago. You now have more information we pivot and
make a different decision. No shame, no shoulds, because all
they will do is cloud your mind and not enable.
Speaker 6 (28:07):
You to pivot. They will stick you in the mud.
Speaker 4 (28:10):
They will make you yourself go into a shame spiral,
which will stop you from helping both your.
Speaker 6 (28:16):
Child and your family. Yeah, one of the saddest things
that I see is again this double empathy problem.
Speaker 4 (28:25):
But when everyone is anxious, we tend to start turning
on each other. I see parents turn on schools. Schools
turn on parents. I see people turn on doctors. I
see autistics turn on parents. Parents turn on autistics. And
it's because we are all overwhelmed and we are all stressed.
(28:51):
We need to walk into every situation assuming good intentions
and competence. Every day you're walking to your child's school,
assume that teachers care about your children and are competent,
and they will do the same to you, and we
will do that same to each other. And that's how
(29:11):
we will be opening conversations, not hide things, and really
move the world forward to support our children.
Speaker 3 (29:23):
Chavon, I've enjoyed getting to know you so much this week.
Thank you so much for your time.
Speaker 6 (29:28):
Thank you so much, Thank you.
Speaker 1 (29:31):
Wow, what an amazing woman, person human. Yes, what a story.
Speaker 3 (29:36):
I learned so much from her this week. And then
also I've just loved being able.
Speaker 1 (29:42):
To share her perspective.
Speaker 3 (29:43):
Yes, it's so unique, so unique, and just so powerful.
Speaker 2 (29:47):
Well, thank you Dr Lamb and a Alisa that lovely interview,
and thank you all for listening to this glorious mess.
We hope you have enjoyed the episode. Feel free to
leave us a raging all of you if you.
Speaker 3 (29:57):
Love the show, and we'll be sharing a link to
the article as well with Chavonne or Dr Lamb in
the show notes. And please keep sharing with us on
the Muma mea Family Facebook page and Mama mea Family
in Instagram and leave us a message. All the options
are in the show notes.
Speaker 1 (30:13):
This episode was produced by Tina Mattlow. See you next week,
See you next time.
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