0:02

This is a Global Player

0:04

original podcast. Welcome

0:15

to this episode of Dirty Mother Pucker.

0:17

I'm your host Anna Whitehouse, the founder

0:19

of Mother Pucker and it

0:22

is my BFF, Polly Hayswood in

0:24

the house. Hi,

0:26

Saviloy. So, you know

0:28

my mum, she's Dutch,

0:30

she gets her phrases confused sometimes. So

0:32

a couple of years back, a couple

0:35

of years back, she said, oh Anna,

0:37

I was up shit creek without a ladder the other day. I

0:40

was up shit creek without a ladder. I was

0:42

like, mum, why would you need a ladder, not

0:44

a paddle? She

0:46

just boldly declares these things. I

0:48

was having a conversation with her this

0:50

morning and she said, lepers

0:53

just can't find their spots, can they? Oh, it's

0:55

so cute. I was like, mum, leopards don't change

0:58

their spots. They don't change their spots. She said

1:00

the grape doesn't fall far from the tree, does

1:02

it? I was like, they're

1:05

on vines, mum. Oh, I love your mum.

1:07

She's so cute. I once said in a

1:09

crowd full of people, well, you know, does

1:12

the Pope shit in the woods? And

1:14

I honestly walked away and people were like, no,

1:17

the Pope doesn't shit in the woods.

1:20

Why is the Pope in the

1:22

woods just no idea why the Pope is in the

1:24

woods? What were you trying to say about? I don't

1:26

know. What was the phrase? I know what

1:28

I know what the phrase meant. I have

1:31

the best intentions of using the correct word within

1:33

the phrase, but the Pope was in my head

1:35

for some reason. What's the correct word? Bears.

1:38

So say the phrase to bear shit

1:40

in the woods. Okay, not the Pope.

1:42

I don't know where he came from.

1:44

Suddenly, he's front and center.

1:47

Probably having a picnic in the woods,

1:49

yeah. How's your week been,

1:51

Beau? Well, you know, testing

1:54

is what I would like to say. Obviously, you

1:57

know, still lack of sleep. That's just rolling on

1:59

as. Add in for Nye Tum, but

2:03

I had a bit of an epic fail this week The

2:06

buggy wheel fell off

2:08

the buggy. So it's a three-wheeler now Have

2:11

a moment for how many wheels have fallen

2:13

off your various vehicles or they've all fallen

2:15

off at some point or another But

2:18

this buggy space have four wheels only has

2:20

three There was a

2:22

situation where I had to go to the car. It's only

2:25

about oh, it's about 15 minute walk Walking

2:28

up and down a massive hill with three

2:30

wheels and a buggy with two kids in

2:32

it on one side Can

2:35

you imagine what that feels like to

2:37

push a three-wheel buggy space have four

2:40

wheels up a hill with two kids

2:42

in it? There's just be one thing after another And

2:45

I'll tell you I was at the kids school and

2:47

I parked the car I had to go in for

2:49

an appointment by the time I've come out my windscreen

2:51

is absolutely covered in what looks like glue Like brown

2:53

glue and I can't get the

2:55

stuff off. What is it? It's like sap. It's not

2:57

from the tree Okay, I think it is. I mean

3:00

like it could be anything Anyway,

3:02

of course, I've got no windscreen

3:04

wash in the car and

3:06

I don't know where it goes I

3:09

don't know where that windscreen was goes. So

3:11

I decided to get my refill

3:13

and just chuck it on the windscreen. Yeah

3:16

As I chuck it, it's like already splashed back

3:18

over me, but I've already put the windscreen wipers

3:20

on So as I throw it

3:22

onto the windscreen the whole windscreen wiper just

3:25

goes like that slosh into my face in

3:27

my mouth I've got it's

3:29

like oh, it doesn't you've got soapy sap in

3:31

your mouth. It's not soapy sap It's like some

3:33

chemical it's like screen wash that I'm like gurgling

3:35

in my mouth and I'm like, okay So

3:38

the only thing I've got to like wash

3:40

it down with is my daughters now my

3:43

daughter's tube fed, right? So she's got this

3:45

specialist high calorie milk, which smells disgusting. God

3:47

knows what it's like Slosh

3:50

that down my neck. So I'm not gurgling like

3:52

windscreen wash and This

3:54

disgusting milk. So you're doing your daughter out of

3:56

her feed. Well, I know it's the only thing

3:59

I had was Yeah, covered

4:01

in windscreen wash. I literally had two

4:03

other appointments that day and I'm covered

4:05

in this windscreen wash. You know there's

4:07

sometimes like, again, like moments where you

4:09

just go, you're okay, hon? I

4:11

listen, I'm never okay. You don't need to ask me

4:13

that. No, just the answer is no. Just

4:16

a category, no. And a little shout out

4:18

to all the villagers who have to witness

4:20

Polly's just existence. Day

4:23

to day. Day to day. I

4:25

never say sorry. It's like in Dumb and Dummy,

4:27

you know, where they go, pretty bird, pretty bird.

4:29

But it's you with a puppy in a law

4:31

made jacket walking around with sappy face. Pretty

4:35

bird, pretty puppy. Morning, Roger.

4:38

Just literally silence. You

4:40

know, this wouldn't have been

4:42

so bad had it not have been for

4:44

the fact that when I was about eight

4:46

years old, I decided to set up a

4:48

recycling business. Did I say that last time?

4:51

Yeah, you have. Yeah. Well, so everyone knows me. They all

4:54

know me. I don't think it's

4:56

quite as bad as when I set up. Do you remember

4:58

my dog walking business called Doggy Style? Yeah, I mean, Can

5:00

I just say, neither of those really took

5:03

off. Yeah. Here we find

5:05

ourselves today, dear listener. Dirty Mother Puckos. Look, that's

5:07

all right. Is it? It will do. Doggy

5:10

Style. She's

5:29

the author of Special. She

5:31

is also a podcast host

5:33

for Tube Talks for the

5:35

Tube Feeding Community. She's also

5:37

the head of content for

5:39

Hebei Health, which supports families

5:41

caring for children and disabilities

5:43

and long term health conditions.

5:45

Welcome to Dirty Mother Pucker,

5:47

Melanie Dimit. Thank you

5:49

so much for having me, guys. Oh, it's so

5:51

wonderful. Good to have you

5:54

here. So this is the bit in

5:56

the podcast where I would usually ask

5:58

the first question, but I'm going to

6:00

hand over to you. to my best

6:02

friend and co-host Polly Hazelwood today. Some

6:04

of you may know her twins,

6:07

her incredible twins, were born with

6:09

a unique genetic condition in 2019.

6:13

She was at the same time told

6:15

by medical professionals that they might not

6:18

live beyond 10. And I, as

6:20

her friend, I would like

6:22

to say life wife, have sat with her, watched

6:25

her very different motherhood journey. So Polly

6:27

Hazelwood, I'm going to hand over to

6:29

you, dear friend. Thank you very much.

6:31

That lovely intro. Oh, Melanie, it's such

6:33

a pleasure to have you here today.

6:36

I just want to start by saying

6:39

why it is you're in the studio with us,

6:41

because out of nowhere, it felt

6:43

you reached out to me on

6:45

DMs in Instagram and

6:48

had asked, obviously you'd been listening to

6:50

the podcast and you asked whether I

6:52

would collaborate with you on a project

6:54

that you're working on. And I saw

6:56

your name and I was absolutely, I

6:58

just had goosebumps all over, because your

7:01

book, Special, which is

7:03

an absolutely astonishing read,

7:06

was the first and only to this

7:08

day book that I read after

7:11

my kids were born. And it took me about eight

7:13

months to pick a book

7:15

up and delve into

7:18

that world. And I think the

7:20

honest truth is, up

7:22

until the point that my children were born, I

7:25

didn't have another person with a

7:27

disability in my community. So

7:29

when they landed, I just

7:31

was in a complete and utter

7:33

state of terror, grief,

7:36

pain, all

7:38

the feelings, all the emotions, the big emotions,

7:41

and I think most of all denial. That

7:43

was what really hit me. And

7:45

I just remember finding your book and

7:47

I would walk to the hospital, this

7:50

is even eight months down the line,

7:52

and I'd read a little paragraph, I'd dip in

7:54

and out, and sometimes I'd

7:57

fall to my knees because I

7:59

was so overcome. with emotion. But

8:02

what was incredible was the overarching message

8:04

of your book is one of hope

8:07

and uplift. And it is exactly what I

8:09

needed in that time. I needed

8:11

that comfort blanket, something to just wrap around me

8:14

and say, do you know what? There's

8:16

joy on the other side, you're going to

8:18

be okay. I just want to start by

8:21

asking you the moment that you received Arlo,

8:23

your son's diagnosis. Paul,

8:26

yes, I will tell you about that.

8:28

But firstly, thank you for those incredibly

8:31

kind words. It means the absolute world

8:33

to me that you found special, helpful,

8:35

especially in those really icky, tricky, awful

8:37

days at the beginning. That's

8:39

why I wrote it, to

8:42

help myself out, to chat

8:44

with other parents, to force me to chat with

8:46

other parents and to, you know, say to them, please,

8:48

God, tell me this is not what I think it

8:50

is. Tell me this isn't the end of the world.

8:52

Tell me that this is going to be okay. And

8:54

as you read in the book, they all came back

8:56

with different versions of you'll be all

8:59

right, give it time, you'll get with the

9:01

program. Sorry, thank you, Paul.

9:03

It means the world to me that special

9:06

spoke to you. And thank you so much again

9:08

for having me here today. It's so lovely to

9:10

meet you both in person. We

9:13

got Arlo's diagnosis when he

9:15

was six months old and

9:17

it's quadriplegic cerebral palsy. He

9:19

was later diagnosed with epilepsy as well. But

9:22

we knew that something was up prior to

9:24

that because he had a really shitty

9:26

birth where he lost oxygen. So he had

9:28

brain damage and they did an MRI

9:30

and they could see that there was damage

9:33

there. And it was very much, you

9:36

know, a game of wait and see what this looks

9:38

like, what's going to turn on, what's not. I

9:41

was like, this is going to be absolutely

9:43

fine. He looked fine from day dot. He's

9:45

been the most engaged, beautiful little

9:47

kid. Like the second I came to after

9:49

going out of general for the emergency, this

9:51

was Arian. I wasn't there for the bath.

9:53

I missed it. But the second I came

9:55

to, you know, he was

9:57

on my shoulder and with his little blue eyes.

10:00

he just stared straight at me, which

10:02

is super alert for a newborn, that

10:04

he's always been, like, so engaging, and

10:06

there's whirls in his eyes. He's such

10:08

a bright kid. Do you remember the

10:11

time that the medics, the professionals, came

10:13

in and delivered that diagnosis to you?

10:15

Do you remember? Yeah, it wasn't till...

10:17

So it was six months later. We

10:19

were checking in with the hospital, and

10:22

you could see that things were going

10:24

off-road. Arlo,

10:27

smiley, gorgeous, engaged, but did not meet

10:29

a single motor milestone. So he never

10:31

really held his head up. He never

10:34

sat up, rolled over. He still doesn't.

10:37

So at around the four-month mark, we were

10:39

told by the hospital, you need to take

10:41

a video of Arlo just on a white

10:43

sheet on the floor. I don't know if

10:46

you guys do something similar. Yeah, all of

10:48

it. Yeah. Yeah, and I remember filming that

10:50

and watching him through my phone video, and

10:53

he just arched on this sheet

10:55

and stared at his cotleg for the whole five minutes

10:57

of the video, and I was like, this does not

10:59

look good. And from that, we

11:01

were told... That's when we first heard

11:04

the word severe. And then

11:06

soon after, it was actually a quite

11:09

nice diagnosis story. We had a really kind

11:11

paediatrician who said to us, look, we're going

11:13

to give you the diagnosis of cerebral palsy,

11:16

but please know that this is a really

11:18

broad thing, which it is. He

11:20

said, you know, some people just have it in

11:23

one finger. And he would have known full well

11:25

that Arlo was not the one finger kind of

11:27

cerebral palsy. Like, now that we've had a second

11:29

kid, it was really obvious that there was something

11:31

quite profound going on here. But

11:33

this diagnosis was delivered in this beautiful way,

11:37

you know, where the doctor said, this way you'll

11:39

just be able to get the supports that he

11:41

needs. And he said, you know, you'll be fine

11:43

at home in your own bubble. Everything

11:46

will feel normal and fine. You know, you might just

11:48

find that it's a bit tricky when you're out and

11:50

about in the world. And I mean, how true is

11:52

that? Like, we got this nugget of total truth from

11:55

this guy right at Day

11:57

Dot. So our diagnosis story...

12:00

I've heard some horrors, but

12:03

I still didn't accept it. I

12:05

was still Googling afterwards, you know, incorrect

12:09

cerebral palsy diagnosis. And the amount

12:11

of times I Googled mild cerebral

12:13

palsy, mild cerebral palsy, I was

12:15

like, this cannot be happening. And

12:17

this cannot be a disability that,

12:19

you know, would be noticeable or

12:21

is going to impact my

12:24

child's life. It took me ages to accept what

12:26

was going on. I was in denial for a

12:28

really long time. How long? Oh,

12:31

yeah. Probably

12:34

a year or two. Yeah.

12:37

I think there's times when I still feel like that.

12:39

If I'm honest with you, if I'm really honest with

12:41

you, and I think, again, coming back to your book,

12:43

what I love about it is it's so raw. It's

12:46

so honest in its approach.

12:48

It was all the things that I

12:51

was feeling and thinking at the time

12:53

that I was too ashamed

12:56

to speak out loud. I

12:58

felt so much guilt around the thoughts

13:01

that I was having at the time. And a lot

13:03

of them were very dark thoughts. I'm going to be

13:05

really honest. I used to drive to the hospital and

13:07

wish the whole thing had burnt down just so that

13:09

I could just have the problem

13:12

completely and utterly taken away from me because

13:14

I didn't know what it looked

13:16

like. I couldn't get my head around it.

13:18

And I think probably my diagnosis story was

13:20

quite different because the children weren't going to

13:22

make it through the next five minutes, through

13:24

the night. And it just went on and

13:26

on like that. So yeah, it

13:29

was a very, I think you describe it in part one

13:31

of your book as the end of the world. And

13:34

I think for anyone, any parent

13:37

that has ever had a child that has had chicken

13:39

pox or an injury, in that moment, it

13:42

completely and utterly floors you. And you

13:45

feel like you're helpless and you don't know who to

13:48

turn to or what to do. And that's something

13:50

that most people will deal with. But

13:52

in a situation when you have a

13:55

diagnosis that is something that medical

13:57

professionals don't even understand themselves. It

14:01

can feel very, very isolated. Is there

14:03

anything darker than the internet searches that

14:05

you do when you're in denial? I

14:08

think whether it's miscarriage or right the way through

14:10

to where we sit now, when

14:13

you are determined to find

14:15

something in the underbelly of the internet

14:17

to qualify the other side of your

14:19

story, I don't think there's a

14:21

lonelier, darker place. And you find one thread

14:23

and then maybe the majority are saying, no,

14:26

actually your reality is your reality. But you find

14:28

that one thread and you hold on to it.

14:32

And that's what keeps you in denial. I think so. And

14:34

I think that's, I don't know about your strategies, but I was

14:36

the opposite of that. I didn't Google anything. As

14:40

I said, I only read your book, started to

14:42

read your book eight months down the road. And

14:44

I certainly shut myself off from the world. I

14:46

couldn't deal, didn't have the capacity to deal

14:48

with other people's sadness and sympathy and God forbid

14:51

pity, you know. And I just had to kind

14:53

of get on with what was in front of

14:55

me, which is putting one foot in front of

14:57

the other and turning up for my kids. But

15:00

yeah, I think the Googling, I think, you

15:03

know, it's we all do it. It's

15:05

part of human nature. Were there strategies

15:07

that you put in place to get

15:10

you through those harder early

15:12

stages? Yeah, well, I distracted

15:14

myself with the mammoth project of writing

15:16

a book. It was such a coping

15:19

strategy for me. And

15:21

I did what you're not supposed to do

15:23

and very much wrote from my wounds and

15:25

not my scars. And that

15:27

is why that book is the way it

15:29

is. And, you know, I love that it's

15:31

helping parents at the start of this because

15:34

it is so raw that, Paul, I haven't

15:36

looked at it for nearly five years. Like

15:38

we came out almost five years ago and

15:40

I find it really difficult to

15:43

look at because it brings me back to

15:45

a place that, you know, I've moved on

15:47

so much from there. But I mean, I

15:49

can tell you, you know, my coping strategies,

15:51

strategies at the time were, yes, doing

15:54

what I do, which is working really, really,

15:56

really hard. Bit of a work ethic. And

15:59

I wanted. words. I'm a

16:01

real wordy person. I wanted

16:03

inspirational quotes, just a line

16:05

that would make this okay.

16:07

And that's why I started

16:09

interviewing people, because I knew

16:11

that they would be the

16:13

source of these words. And

16:16

that was a way to connect with

16:19

parents that wasn't going to a disability

16:21

parent support group when I couldn't even

16:23

say the word disability. What was one

16:25

of the hardest stories that you had

16:27

in that book? What was the toughest

16:29

one to read? Look,

16:31

the stories, they were really

16:33

uplifting for the most part. But when I

16:35

started interviewing for special, whenever I talked to

16:38

someone who had a child with cerebral palsy

16:40

similar to my son, I'd always want them

16:42

to tell me that their kid was walking

16:45

and talking and that everything was fine.

16:47

So that changed over the course of

16:49

writing the book. And as I kind

16:51

of got more comfortable in this, but

16:53

I remember being really disappointed to learn,

16:55

yeah, that one particular interviewee,

16:57

their son, wasn't walking.

17:00

Because for so long, that was

17:02

completely unacceptable to me. Alu had

17:04

to walk. I couldn't fathom a

17:06

life where my

17:08

son couldn't walk. I now

17:10

know that walking is really not a

17:12

crucial ingredient for a lovely life. I've

17:15

learned a lot, but that was completely

17:17

unacceptable to me for quite some time.

17:37

It's so interesting, isn't it, how we always

17:39

have this hierarchy of what's acceptable and what's

17:41

not. And I think anybody that

17:43

is a care of a child

17:45

with a long term condition or

17:48

a disability, you start

17:50

off with this almost like a list

17:52

of, well, okay, well, if they walk,

17:54

then that's acceptable. And if they talk,

17:57

and of course it all goes

17:59

completely out of the window as

18:01

life goes on. And then you start to

18:03

learn to just accept, you know, throw the

18:05

entire rule book out the window. It's that

18:08

book, What to Expect When You're Expecting. I

18:10

wanted to take it, rip it up, burn

18:12

it, stamp on it. I

18:14

think when you've got a child that

18:16

operates on their own trajectory with the

18:19

milestones, you have to really just

18:22

abandon anything you've ever learned

18:24

about motherhood or parenthood and

18:26

start all over from scratch.

18:28

I think it's exceptional that

18:30

you've had that time interviewing

18:33

so many different people from so

18:36

many different backgrounds and experiences. What are

18:38

some of the key takeaways that

18:41

you, I mean, some of the really

18:43

more prominent kind of meaningful moments that

18:45

you can share with us from

18:48

those experiences? Yeah, well, a

18:50

big one was chatting with

18:54

Debbie L. Natan, who's this inventor

18:56

living in Israel. She was

18:58

amazing. She's got a son with cerebral palsy

19:01

and I spoke to her about the walking

19:03

and, you know, saying my son has to

19:05

walk. And she, you know, it's done a

19:07

lot of research in the disability space and

19:09

said to me, oh, look, you know, you

19:12

speak to disabled adults and they're not actually

19:14

that fast about walking or not. The important

19:16

thing is, do they have friends? Do they

19:18

have a social life? And that really shifted

19:20

my thinking. You know, at the time, Arlo

19:23

has a lot of therapies, physio, speech, OT.

19:25

He still has every week, several appointments. But

19:28

at the time I was like, gung ho.

19:30

Whenever I was with him, I was exercising

19:33

him. He was propped up against the couch

19:35

the whole time. Like there was very little

19:37

play or fun. It was all like

19:40

everything had this underlying thrown and developed

19:42

your gross or fine motor skills or

19:44

something. And hearing that was really good

19:46

for me because it made me realise,

19:48

well, if he spends his entire childhood

19:51

propped up against a couch, how

19:53

is he going to make friends? You know, how

19:55

is he going to be out in the world?

19:57

And he's a kid that's going to need to,

19:59

you know, a lot of help from people throughout

20:01

his life. If he's not

20:04

nice, if he's not a sociable

20:06

guy, how's that going to work?

20:08

Exactly. I think it's such a

20:11

comment on the way

20:14

we are as an ableist world.

20:16

Yes. All these preconceived notions

20:18

that we had as parents when we

20:20

made that list as long as

20:22

they can walk, as long as they can eat, as long

20:25

as they can talk. And that's, I think, what I mean.

20:27

I think there's so much education

20:29

to be done in the world in

20:31

terms of teaching parents

20:34

like me before I had children,

20:37

like Anna, who also

20:39

hasn't walked in our shoes, how to

20:41

be more inclusive. We've had many back

20:43

and forths, haven't we? And I'm very

20:46

lucky to have a friend who's willing

20:49

to let me make mistakes, if I'm

20:51

being really honest. I think being able

20:53

to make mistakes and having someone say,

20:55

well, actually, this is what would help

20:57

me, this is what would help my

20:59

twins. Can both of you, in your

21:01

own words, define ableism? Because I think

21:03

often we hear it said a lot,

21:05

but I think from both your perspectives,

21:07

just your own definition of it specifically.

21:10

Well, I guess for me, I thought,

21:12

and yeah, I get upset saying this

21:14

now because it's total bullshit. I know,

21:16

but I thought if you couldn't walk,

21:18

talk and eat as a human,

21:21

that there'd be no point to your life.

21:24

That's ableism. And Arlo has just

21:26

completely thrown that out the window

21:29

for me. Were you inherently ableist?

21:31

Oh, heck yeah. Oh,

21:33

absolutely. I'd say most people are inherently

21:35

ableist. It's systemic, right? So you take,

21:38

for me, I take my kids to

21:40

the park. What pieces

21:42

of equipment can they use? If

21:45

I'm lucky, there'll be a dish swing

21:47

and I can lie them in the

21:49

dish and push them. But that's about

21:52

it. So why aren't the park designers

21:54

designing parks for everybody that

21:56

are completely inclusive? Did you see Sophie

21:58

Morgan on Loose Women Lost? week. It

22:01

was such a powerful rant she

22:03

had and it made me really

22:05

understand ableism. They had a guy

22:08

on who had started

22:11

walking from being in a wheelchair so

22:13

he described that moment

22:15

where he stood up and

22:17

walked and the whole crowd clapped

22:20

on loose women. Yes. And

22:23

Sophie Morgan said there was no more

22:25

disgusting moment for her was

22:27

that moment of

22:29

congratulations of almost

22:31

like, oh great you've come from the dark

22:33

side to the good side. Amazing. Walking his

22:36

thumbs up in a wheelchair thumbs

22:38

down and actually they panned

22:40

across the loose women audience and it was

22:42

chilling when you heard it from Sophie

22:45

Morgan's perspective. Sophie Morgan's an incredible

22:47

disability activist and just hearing her

22:49

take on how we respond to

22:52

those moments. It was, there's

22:54

no other way of saying it. Chilling. There's

22:57

a bigger picture here isn't there and

22:59

I think this is what I loved

23:01

so much about your book. It's so

23:03

powerful because actually it's the way that

23:06

we all see the world and

23:09

you know even when parents like us

23:11

who know about their children's condition

23:14

way before they give birth are

23:17

always offered would you terminate right?

23:20

Even it even right before the kid has even

23:22

arrived. Were you both offered that? Yeah. Well

23:25

it was a surprise we didn't know. Yeah.

23:27

Yeah I mean I wasn't,

23:29

they didn't know. Nobody knew about

23:31

my kids condition until they arrived

23:33

but because there were questions that

23:35

were raised they wanted to do

23:37

an amniocentesis and because I

23:40

had twins I was obviously there's a

23:42

huge risk factor anyway in any amniocentesis

23:45

but I was too afraid to have that because

23:47

I thought I was going to lose

23:49

one but they talked endlessly about the

23:52

idea of termination and I

23:54

remember that just that was one of the

23:56

worst points actually in the entire journey is

23:58

a thought of you know losing them and

24:02

now reflecting on that, I think it comes

24:04

back to looking at the way that we,

24:06

you know, we see the world and these

24:08

kids that we have are less than. That's

24:11

what it says. Do you have moments Melanie,

24:13

if you were given that same question, do

24:15

you think about how that would have felt

24:17

to you if

24:19

Arlo wasn't a surprise? I mean, yeah,

24:22

it's really different with Arlo because it was cerebral

24:24

palsy, it was from a brain injury, it was

24:26

nothing that happened before or could be detected

24:29

before, but I think there's a

24:31

massive problem with doctors saying

24:33

those things because it's an opinion, it's

24:35

a clear, you know, opinion

24:37

one way. It's not just giving information,

24:39

it's not saying this is what your

24:41

child has, here's some information, here are

24:44

some options. You know, saying, oh, do

24:46

you want to terminate? It just sets

24:48

this awful tone for the

24:51

whole scenario. That's something that

24:53

really needs to change. A

24:55

good friend of mine has a

24:57

child with Down syndrome and she runs this amazing

24:59

charity called 21 Gifts and it's

25:01

all about rewriting the opening act of

25:04

the delivery of a diagnosis. You know,

25:06

just being kind, just giving

25:08

information, not saying things like, you know,

25:11

we think you should terminate or not having

25:13

an opinion because if that comes from a

25:15

medical professional, like, you know, we're

25:17

so trusting of these people,

25:20

like it's a huge problem and

25:22

it needs to change, absolutely. I

25:24

think that's it, it sets the

25:26

tone, doesn't it? I remember there

25:28

was nothing but negative language

25:30

used from all the medical professionals when

25:32

my kids were born. What sort of

25:34

language? So just, we would have doctors

25:37

day in, day out, probably five different

25:39

specialists at one point, especially in the

25:41

early days, that would come in and

25:44

it would even be the ritual of walking down

25:46

this very bland corridor, being put into a tiny

25:48

little room and having the box of tissues and

25:50

some cups of water, their facial

25:53

expressions, they would be sat there, a look

25:55

of pity and we're so sorry that this

25:57

has happened to you. You know, we can't,

25:59

you know. believe that something like this could

26:01

happen, but it's these are the facts. And

26:04

every single time I used to grab my

26:06

partner's hand, just say, thank

26:09

you very much. No, there's no questions.

26:11

And I'd walk out because I

26:13

just couldn't, I couldn't take the

26:15

weight of their pity. I just

26:17

wanted to just love my kids. And

26:19

I couldn't, I couldn't love my kids

26:21

because there were all these other medical

26:24

terms flying about and reasons as to why they

26:26

might not make it. And I think it's- I

26:29

remember you saying when you were

26:31

looking around that room with like

26:33

40 medical professionals with like thick

26:35

wads of, you know, medical stats

26:37

and information about these two little

26:39

humans, you were never seen as

26:41

mum or dad. You were seen

26:43

as the providers of a science

26:45

experiment. Yeah. Was how, I remember

26:47

you described it. Oh yeah, I think in the NICU,

26:50

was Arlo in the NICU when he was born? Only

26:52

for a week. Only for a week. You

26:54

were very lucky. Yeah, and think some parents have

26:56

their children in there for you, you know, couple

26:58

of years, it's crazy. But the NICU for anyone

27:00

that doesn't know is the intensive care unit where

27:02

the babies go if they have any sort of

27:05

medical issues. And I think that in itself, that

27:07

place, anyone that has experienced the NICU and know

27:09

exactly what we're talking about is such

27:11

a soulless, devastatingly

27:14

painful space to be in where

27:18

you feel like these two little

27:20

babies, all you want to do is

27:23

just love them. Our

27:25

medical experiments, they feel like scientific

27:27

experiments, all that control of becoming

27:29

a new mother for the first

27:31

time, all that joy is just

27:33

totally taken away from you. And

27:35

I don't know, yeah, what your experiences were

27:37

about. Well, we couldn't cut Arlo, so he

27:39

was put, we had him on my shoulder

27:42

when I first met him and then very

27:44

quickly he was put in like an incubator

27:46

thing to be cooled down for three days

27:48

because apparently that stops the brain damage. So

27:50

I couldn't hold him for

27:52

three days. We could barely touch him.

27:55

And that was really hard. Yeah, because you're supposed

27:57

to, in that time it's all about bonding with

27:59

your. your child and trying to

28:01

breastfeed and even just having that skin

28:03

on skin. And that's all taken away

28:05

from you. And nevermind the fact that

28:07

you've got the monitors beefing and you've

28:09

got the doctors rushing in, stabbing your

28:11

child with God knows how many injections

28:13

a day or whatever it is. It's

28:17

quite a traumatic experience, isn't it? And I

28:19

think, yeah. You both said though, on the

28:21

other side of this trauma, and obviously that's

28:23

the message you both are now, like, I

28:26

think giving people hope on the other

28:28

side of this. When

28:30

did you start, I suppose both of you,

28:32

feeling that hope, feeling that

28:35

actually this weight of medical

28:37

almost science experimentation

28:40

had been parked and you were left

28:42

with your two or three

28:45

babies? It's ongoing.

28:48

So there are still moments where suddenly

28:51

you're back at square one and it

28:53

feels medical again. Although my son started

28:55

tube feeding at age five and that

28:58

sucked, that felt very medical. Overnight

29:00

he went from eating, we were helping him

29:02

eat in his mouth to then having a

29:06

tube put into his stomach that would formula would

29:08

be pumped through and he'd be attached to a

29:11

pump. That's all changed now. We're feeding him real

29:13

food through there again, which is great. But

29:16

it's not like it's bad, bad, bad, bad.

29:18

And then suddenly it's okay. It's

29:21

changing all the time. But I think for

29:23

me, what really started to

29:26

open my eyes was when we started

29:28

taking Arlo to therapies, to his

29:30

physio OT speech. We went to

29:32

these therapy centres that were big, open

29:35

plan gyms and seeing other families with

29:37

other kids with disabilities all together. I

29:39

kind of realised, okay, I'm not doing

29:42

this by myself. And then meeting other

29:44

parents and then talking to other parents

29:46

for the book and then connecting with

29:48

other parents on, like thank frick for

29:51

social media. I don't know how parents

29:53

did this before we had social media,

29:55

connecting with people like Polly on the

29:58

other side of the world. who just

30:00

get you. We don't

30:02

know each other, but I just feel like,

30:04

you know, it's instant. I think you

30:08

talked about it in your book that you

30:10

become instantly part of this club. And it's

30:12

a club in the beginning that you feel

30:14

it's the club I don't want to be

30:16

part of because you don't know what you

30:18

don't know until you've walked down

30:20

that, you know, on that journey

30:22

with your children. And you've learned that there's a

30:24

different perspective to life, one that's

30:27

beautiful and nuanced and full of celebration

30:29

in a way that I think the

30:31

tiny milestones, everything is celebrated when you

30:33

have a child with a severe condition

30:35

or a disability. And I think that's

30:37

the beauty in it. But yeah, I

30:39

think yes, it's really, it's really hard

30:41

when you ask about that, the trauma

30:43

never goes away. It's not like you've

30:45

had a car crash 10 years

30:47

ago, that, you know, you might get

30:49

triggered if you watch something on the

30:51

TV that was similar to that. But

30:54

a new piece of equipment arrives, a new

30:57

diagnosis lands, your child gets sick, it's severe,

30:59

you end up in hospital, it's

31:01

ongoing, it's never ending. It's,

31:04

it's constant, isn't it? That's the

31:06

truth. But I think, you

31:08

know, having talked about all of

31:10

that, there is so much

31:13

beauty. And I think that's what we wanted to

31:15

talk about today, because your book is

31:18

nothing but hopeful and inspiring. And

31:20

every parent should read it, whether you

31:22

have a child with a disability. In

31:25

particular, you should read it if you don't have

31:27

a child with a disability, because it's such a

31:29

great education. But I think, yeah,

31:32

what are some of the, I

31:34

guess, what are some of the sort

31:36

of strategies that you would love parents

31:39

that don't live in this world in

31:41

our world, to take away

31:43

things that they can now put into their

31:45

day to day life that would help them

31:48

to be more inclusive and understand what we're

31:50

the world we're living in? Please don't

31:53

think my life or my son's

31:55

life is shit. Yeah, because

31:57

it's not I totally get it because I

31:59

would have looked at my family and thought

32:01

that's the worst possible thing that could ever

32:04

happen. You know, if you told me you're

32:06

going to have the kid who doesn't talk

32:08

and is in a wheelchair, I

32:10

would have never have had children. And that kills me

32:12

now to think like, waterfall, I

32:14

would have missed out on this. Yeah,

32:17

it kills me, but that's the truth. I would

32:19

have looked at our family and thought that's a

32:21

disaster. It's not. I

32:24

think we're probably having more fun than many

32:26

typical families. But I think that's really hard

32:29

to say, isn't it? Because I know I

32:31

would have been in exactly the same shoes.

32:34

I would have walked the same shoes as you. Had I

32:37

have heard somebody else say that because

32:39

I didn't have anybody in the disability

32:41

community in my community. And

32:43

so what would you say to the parents now

32:45

that are listening to that? Like, how would they,

32:48

you know, what's the best thing for them to

32:50

do to go and educate themselves to go and,

32:53

you know, not feel that

32:55

actually, oh, gosh, poor you. What

32:58

a life you must lead. Yeah,

33:00

I guess open your eyes. I mean,

33:02

disability is everywhere. I thought, you know,

33:05

I knew nothing about it and didn't

33:07

know anyone with disability. I did. It

33:09

just I wasn't clocking it.

33:11

You know, it's one in six people.

33:13

I've been really impressed. We go to this

33:15

beautiful little inclusive public school and, you know,

33:17

Arlo gets asked on play dates. He has

33:19

real, you know, genuine friendships. And I know

33:21

again, I would not have been the parent

33:23

that would have been inviting the kid with

33:25

the wheelchair to come over. I would have

33:27

been terrified. I would have thought, oh, God,

33:29

like, what if you can't get in? Or,

33:31

you know, for a million reasons, I wouldn't

33:34

have done it. But parents do.

33:36

And it's they follow the lead of

33:38

their their children because children are totally

33:40

inclusive. I know everywhere he's gone, every

33:42

educational setting everywhere, he makes friends so

33:44

easily. He's so charming. And kids couldn't

33:46

care less. No, they don't. And I

33:48

think that's where Polly and I started

33:51

with my daughter. And I've said this

33:53

a couple of times, but it bears

33:55

repeating. When I first went to meet

33:57

the twins, I was like,

34:00

I think I felt parenting my children

34:02

in the car by saying, be really

34:04

careful with them. You

34:06

know, they aren't like you. How ridiculous is

34:08

it saying that? You know, this is coming

34:11

from a complete inherent ableist, hand in the

34:13

air. And my daughter just

34:15

stopped me mid-sentence. She went, Mum, they're

34:17

just kids. And she was

34:19

like six, seven at the time. And

34:21

she went in, played with them. I

34:24

was the one creating an issue. I

34:43

put out a little call for anybody who wanted

34:46

to know more about how they could be more

34:48

inclusive as a parent, much along the lines of

34:50

what Polly is saying, because I'm going to say

34:52

there are a lot of people who want to

34:54

do the right thing. Their intention is right and

34:57

good. Like with the example we had a

34:59

couple of months ago with Sophie Morgan, where she said,

35:02

I see a parent walking down the street with their

35:04

child and they completely go, oh my God, get out of

35:06

the way. There's a wheelchair user. And she's like, I know

35:08

their intention is to create space for me, but actually

35:10

you're making me feel other. And it was such a

35:12

powerful moment. There's another example Polly used

35:15

a couple of months ago as well. And

35:17

she said, and it was so

35:19

strange being at this birthday party that my

35:21

twins are invited to. They

35:23

were lying on the ground and the kids were

35:25

all playing at the party. And what I would

35:27

have done for one of those kids to just

35:30

run over and smile and wave, what

35:32

I would have done for one of their parents to

35:34

say to the kids, like, oh, go and include Polly's

35:37

kids. And I think there's a

35:39

question we've had about five or six. These

35:42

are questions people feel they

35:44

can't ask for people getting it wrong,

35:46

that they'll make a mistake, that they'll

35:48

be ableist, you know. And

35:50

it's almost that silence head in the sand

35:52

is sometimes better. I think especially in Britain,

35:55

in the UK, where we're a bit more sort of, we

35:57

hold back on tackling sometimes hard. of

36:00

questions. But this comes

36:02

from another Melanie. She said,

36:05

we have a child with a terrible

36:08

palsy in our class, but my son

36:10

isn't naturally friends with this kid. But

36:12

I want to be more inclusive.

36:15

Is it not patronising or like tokenism

36:17

for me to include

36:19

this child, even though he has

36:21

no association or contact really with

36:24

this boy? And so she

36:26

just wanted to know like, what is the line on

36:28

that? I'm probably going

36:30

to be controversial here, but I certainly wouldn't

36:32

like force your kid to be friends. I

36:35

mean, Arlo just has loads of kids that

36:37

he's friends with naturally, but

36:39

he doesn't get invited to everyone's birthday party.

36:41

I don't think you know, you should just,

36:43

you know, like force your kid to be

36:45

friends with someone just because they have a

36:48

disability just because you want to be more

36:50

inclusive. What do you think, Paul? Like that

36:52

doesn't sit right with you. Yeah, I think

36:54

it's a really tough one, isn't it? Our

36:56

kids just celebrated their fifth birthday and I

36:59

wept at the end of the day because it

37:01

was beautiful. My friends came, they bought their kids,

37:03

but of course all the kids were playing and

37:05

doing all, you know, all the things that kids

37:07

do, swinging on the swings and running around chasing

37:09

each other. And my kids were just sort of

37:12

on their mat, rolling around,

37:14

having a lovely time, dancing, you know,

37:16

in their own way and playing with

37:18

each other. But there was a deep

37:20

sense of sadness that they weren't doing,

37:22

you know, enjoying the other kids' company.

37:24

But I agree with you. I don't

37:26

think you can, you can't force that.

37:29

You can't force that on any children.

37:31

I think just turning up, you know,

37:33

having my friends there, bring their children

37:36

on a consistent basis, not all the time, but

37:38

you know, having them dip in and out of

37:40

the kids' lives is really important to me. And

37:42

I also think it's important to their kids. And

37:45

that comes to a question from Ellie. She said,

37:48

what can I do within my four

37:50

walls to educate my children? And I

37:53

think that is maybe coming to the previous question

37:55

from Melanie, you know, is that if she may

37:57

be educated, her child, like I hope to do.

38:00

better beyond this, within the

38:02

four walls, maybe they naturally would have

38:04

become better friends with that little boy

38:06

in that class. So it's kind of

38:08

a self-fulfilling prophecy almost. Yes.

38:10

I mean, there are beautiful kids books

38:12

out there that are about little

38:15

kids with all sorts of things going

38:17

on, in particular ones by Amy Webb.

38:19

She's an American author. She's got some

38:22

great ones. There's definitely resources out

38:24

there. But I think, yeah,

38:26

it's the whole, like your previous guest said,

38:28

it's the not being scared of

38:30

it. Even if you might

38:32

think it's not that the disability

38:34

is a scary, bad thing, just

38:37

not passing that on to your kids,

38:40

not running away from the wheelchair to

38:42

get out of the way. I think

38:45

it's probably really subtle things that

38:47

have the most impact. Like what?

38:51

It's the moving out of the

38:53

way for the wheelchair. It's the

38:55

not wanting to talk.

38:57

It's the not saying hello.

39:00

It's the assuming that, you know, because

39:02

my child doesn't talk, doesn't walk, that

39:04

there's nothing going on here. And again,

39:06

I mean, this would have been me.

39:08

I would have assumed there was nothing

39:10

going on. Arla was so bright. Maybe

39:12

just being a bit careful, you know,

39:15

and thinking before you speak.

39:17

That's a very good point because Michaela

39:19

has said, what are the most frustrating

39:21

things that you both maybe hear that

39:23

jar with you and do

39:25

make your children feel other as a

39:27

parent? Oh, gosh. I mean,

39:30

I can start. This is coming from

39:32

like a family member and I'm obviously

39:34

not going to say who, but just

39:37

in the beginning, that whole, you know, the

39:39

kids were born, there was

39:41

that question

39:43

about, well, maybe you

39:45

should ask the IVF clinic whether they

39:47

got it wrong because, you know, you

39:50

never know. They might not be yours.

39:52

And I just, it's

39:54

good. It didn't even resonate in that

39:56

moment because there was so much else

39:58

going on. my God does that

40:00

hit me now to say something

40:03

like that. Yeah, people just

40:05

don't think. It astounds me

40:07

the stuff that people think

40:09

is okay. Yeah, and I

40:11

think it's hard, isn't it?

40:13

It's a hard line because I think we

40:15

want to open up these conversations, we don't

40:17

want to shut them down. I'd absolutely hate

40:19

it if somebody with a child

40:22

didn't want, couldn't feel like they could approach me

40:25

because they didn't know what to say. I'll

40:28

always come any conversation with kindness and hold

40:30

space for it. It might be later on

40:32

that I might, so actually, you'd better off

40:35

use this word or this way to

40:37

describe my child. Ultimately, I just

40:39

want you to see my children as children.

40:42

There's so, their personalities, their colors,

40:44

all of it. Well, J.P. has

40:46

said, I'm in the Instagram influencer

40:48

world and I want to

40:50

do more to speak about ableism, but

40:53

I get so caught up on terminology, on

40:55

capitalizing the D for disabled, not capitalizing it,

40:57

that I feel, again, like every step of

40:59

the way, I'm going to get it wrong.

41:02

And yet I want to amplify

41:04

messages. I want to say more

41:06

on this. Like, can

41:09

you just give me some guidance on how

41:12

to communicate effectively when you are

41:14

not somebody who has experienced what

41:16

you have experienced? I'd

41:18

say take the lead from whoever it is you're

41:20

speaking to. Language is

41:23

such like tricky territory

41:26

in this space, whether in

41:28

the autism community, whether someone is autistic

41:30

or has autism can cause great offense

41:32

if you get that wrong. Which,

41:35

so between autistic and autism. It's

41:37

whether you use identity first or

41:40

person first. Language. But I

41:42

think the best thing is just to find

41:44

out from the person what their preferences are

41:46

around language. Yeah,

41:50

it's tricky and it's really personalized.

41:52

So I'd say take the lead from

41:54

whoever you're talking with or about and

41:56

to that influencer. I don't know if

41:58

they are disabled, but if. they're not,

42:01

I'd say chat with people who are,

42:03

bring them onto your platform, elevate their

42:05

stories and their voices. I'd say that'd

42:07

be the way to go about it.

42:10

Lucy has said, does it

42:12

feel patronising having people even

42:14

asking questions? I'm just

42:16

thinking that, yeah. Good question.

42:19

No, I love it. I love the

42:21

questions. And so, you know, I'd

42:23

say just come at me from a neutral,

42:26

curious place. And that's how I approach this

42:28

space. And it's funny that I'm being questioned

42:30

as if I'm some expert on this. I

42:32

am not. I'm still ableist in a whole

42:34

bunch of ways. Like I'm still learning. I

42:36

am certainly not the expert on any of

42:39

this. In what way would you say you're

42:41

still ableist? Because I think it helps people

42:43

to recognise that we're all on a journey.

42:45

You know, to be honest, whether it's racism

42:47

or ableism, there's no finite moment where you

42:50

go, right, yep, that's fixed. Because it's

42:52

like you say it's structural, it's inherent,

42:54

it's endemic. So how

42:56

would you say you're both still maybe ableist?

42:58

Do you want

43:00

to go first? Well, I still

43:02

feel a discomfort or not knowing, you

43:05

know, if I meet, say, a disabled

43:07

adult where I'm not quite... Like I

43:09

still get nervous to say the wrong

43:11

thing, even though I know and work

43:14

with loads of disabled adults now. I'm

43:16

still not quite sure. And I'm

43:18

still worried that I will offend someone. So

43:21

whether that's being ableist or not, I'm not

43:23

sure. But yeah, I'm certainly not always 100%

43:26

comfortable talking and being in this space.

43:28

And I would say, you know, as

43:31

a parent of disabled children, it's

43:33

not like I've swallowed an inclusivity

43:35

encyclopedia. The language is

43:37

something that's always evolving. And I think it's

43:40

very nuanced. And it's, you

43:42

know, it's individual. It's what's right for the

43:44

individual and their family. What do you use,

43:46

Polly? I... Do

43:48

you know, I probably use a mixture of things.

43:50

If I'm really honest, I don't really think about

43:52

it. And I probably should. And that's probably a

43:55

learning for me, you know, to take away. But

43:57

it's... I think because I still

43:59

see the children... as children and that comes

44:01

to my next point about ableism. I think

44:03

in terms of, I

44:06

know that there's still hang-ups from

44:08

the way I've been brought up

44:11

in society. I still

44:13

have fears and questions about my

44:15

children's future in a way that

44:17

I still can't just fully accept

44:20

that they are on this journey.

44:22

That's an enormous thing to rewire

44:24

your brain about. That state of

44:26

denial we talked about at the

44:29

beginning, it plays into that. A

44:31

question from Katie, she said, we're

44:34

talking obviously about inclusion, but when

44:36

have you both felt exclusion? There's

44:39

a soft play centre near it. It's always

44:41

a playground. It's always when your kid can't

44:43

go on anything. I'm the same as you,

44:46

Paul, unless there's one of those, you call

44:48

it a disc. We call

44:50

it a nest swing. Yeah, nest swing. Unless there's

44:52

one of those. Arlo usually can't go on anything

44:54

and he's getting heavier. We're not going to be

44:56

able to lift him out onto those for too

44:58

much longer either. I mean, for me, it's a

45:00

bit different because I have twins. There's

45:02

two of them. My daughter's tube

45:04

fed. There's that whole routine that

45:07

once you start, you've finished feeding, you

45:09

start pretty much all over again. They've

45:12

both got very severe needs. Actually,

45:15

getting out of the house for

45:17

me feels exclusive unless I have

45:20

somebody else with me. It's a

45:22

two-person job. Then take on other

45:24

spaces. My children can't access most

45:27

of the spaces unless, again, somebody

45:30

is facilitating their play, their interaction,

45:32

the language. They're filling in all

45:34

of the steps

45:38

that neurotypical children

45:40

would complete themselves. That's what

45:42

I think is

45:44

tricky. Anne-Marie has said the other side of

45:46

that coin is when have you both felt

45:49

a moment of beautiful

45:51

inclusion which may be described as

45:53

neutrality? With

45:56

kids. Arlo has

45:58

beautiful. beautiful friends, his best

46:00

friend Frankie, shout out, so

46:03

she's gonna marry him, she's

46:05

determined. And I mean, she

46:07

just speaks to him, she includes him in

46:09

conversations, they go on the trampolines together. And

46:12

all through his life, he's been in

46:14

mainstream educational settings and just thrived and

46:16

the kids, he's always had really good,

46:19

genuine friendships. I so hope this continues.

46:21

I hear that when kids turn nine,

46:23

they become not as nice.

46:25

I'm really hoping that's not true, because

46:28

we're almost there, but yeah, it's

46:30

other kids is where I see,

46:32

is where I feel that Arla

46:34

was most included. Same, same,

46:36

kids are just beautiful spirits,

46:39

aren't they? And they're so accepting of

46:41

everyone and everything around them. It's just,

46:44

it actually makes, I could weep thinking

46:46

about the interactions that my children have

46:48

with others. I think there's, I

46:51

mean, your kids are amazing. I've got lots

46:53

of friends in my life that have children

46:55

that come into the space and just nurture

46:57

them and play with them and naturally

47:00

facilitate the play, naturally talk on

47:02

their behalf, because they know, they

47:04

just understand, they're nonverbal. And it's

47:07

just, it's such a beautiful thing

47:09

to watch. It's the way the

47:12

world should be. And sadly it's not,

47:14

but you know, that's what we're here to do

47:16

and advocate. I love you. And

47:19

I have to say, when I

47:21

actually started out talking on this

47:24

podcast about Polly's story, we

47:26

had quite a bit of kickback because I

47:28

was sort of centering the

47:30

parental experience over the

47:32

child experience. And, you know, it almost

47:34

felt when I look back at those

47:36

initial posts, we've come on such a

47:39

journey of unlearning, I think, of

47:42

yes, you can be sad

47:44

as a parent that your children

47:46

have been given a diagnosis, life-limiting

47:48

diagnosis, what parent would not feel

47:50

that pain, regardless of

47:52

circumstance, regardless of, you

47:55

know, medical receipts on this. But

47:57

then the other side of that story. is

48:01

other is that difference and

48:03

how actually seeing you grow

48:05

as a mother, a mother,

48:08

seeing your children play with my

48:10

children, it has

48:13

probably been one of the most beautiful

48:15

experiences of my life, like us becoming

48:17

mothers together and growing into it

48:19

together. And when I said to Polly, so

48:22

how do we get into this interview? And she said, all

48:25

I want is for the whole

48:27

motherhood experience to be recognised. Exactly.

48:30

Everyone's, all I want is

48:32

for my children to go into a park and be

48:34

able to play. All I want, let's

48:37

be honest, is to be able to walk out the door.

48:39

Is to be able to walk out the door. Yeah, absolutely.

48:42

That, I think it's, nobody

48:44

can quite understand unless you walked in

48:46

our shoes, like the beauty that children

48:48

like ours bring to life. It's

48:51

just that wider perspective on

48:53

the world. And it's,

48:55

you know, I said it before, but

48:57

the nuanced celebrations that you have moment

48:59

to moment, you know, your child smiles,

49:01

you've been told your child will never

49:03

smile. They smile, you know, they start

49:06

clapping, you know, five years old, whatever

49:08

it is. But it's such a moment

49:10

of celebration. We don't have shouting and

49:12

tantrums and things like that. The other

49:14

parents experience in our house, it's just

49:16

full of joy and dancing and laughter

49:18

and it's wonderful. And it

49:20

counters, you know, the medical side of

49:22

stuff. And the whispers and the

49:25

hushes. That's what Ellie Simmons said. When

49:27

I'm in Sainsbury's walking down, you know,

49:29

the Ting goods aisle and there's a

49:31

parent whispering and hushing their child. He's

49:33

asking why I'm so much smaller than

49:35

everybody else because I have dwarfism. She's

49:38

like, don't do that. Like with Sophie

49:40

Morgan, don't like dramatically back your children

49:42

out the way. Like I'm so

49:45

different, so other. It

49:47

was like, just let your kids talk to me.

49:50

Why are you different? And

49:52

I've said this before, I'll never forget. One

49:54

of my best friends was

49:56

born without four fingers and he

49:59

would often just. say that a dog bit his fingers

50:01

off because he couldn't deal with

50:03

saying that he was

50:05

disabled. And my

50:07

daughter asked one day, she goes, why is

50:09

your hand different? And he just responded. He

50:11

goes, because I'm different. Different's

50:14

good. And she just

50:16

was like, great, move it on.

50:18

Then she goes, why are you married to a man? Because

50:20

different is good. And that, I

50:27

have to say, get emotional about this is what

50:29

Polly was told with the antithesis

50:31

to that when her babies were born.

50:33

And that's that moment every mother gets

50:35

where you're offered a termination is

50:38

that different is bad. Different is good.

50:40

And thank you so much both of

50:43

you for opening up the

50:45

conversation and we'll continue it

50:47

at Dirty Mother Pucker. Send

50:50

us DMs. We'll post about every one of

50:52

your questions. If Melanie, you'd be happy to

50:54

join a conversation there where we answer even

50:57

further because we can only get through

50:59

a very few questions on this podcast.

51:01

But until next time,

51:03

your book can be bought now

51:06

anywhere where you get your books. And

51:08

it is called very actually special. Thank

51:11

you, Melanie. Thank you so much for having me.

51:21

This is a global player original podcast.