Hi, my name is Jordan. I am a special education
teacher from the UK. I share my passion for everything
communication, sensory regulation and fun lesson
ideas for my classroom of disabled pupils aged
4 to 11. Each week I am joined by experts in
the field answering your questions and sharing
our knowledge and experience working alongside
our beautiful young people. Let's get started.
Hello everybody and welcome to the Sensory Classroom
podcast. My name is Jordan. Today I'm joined
by Kelly from Born Anxious which is a clothing
brand but actually so much more than that. It
is pure advocacy in every form. Kelly wears a
lot of hats as mum and neurodivergent herself
and the clothing brand and everything else that
we'll delve into today and I'm really happy to
have her on today. Hi Kelly. It's so nice to
be in the space. It's nice to be sitting down.
I bet. You look busy. You wear a lot of hats.
yeah it's busy we've got a good flow though like
I just think don't interrupt the flow you know
living in a way where you have to remove demands
it actually just puts you in a different pace
I think because you can't have demands so therefore
you're removing time demands for you as well
so people say you're so calm and I just think
well don't have a choice Yeah. And how long have
you lived like that? Talk to us about your family
set up. Yeah, so my family set up is I've got
two older children. So we were very, you know,
quite neurotypical, really. 2 .4, you know, they
met all their milestones when they should have
done. And maybe the most worrying thing was what
bow we were going to wear in our hair or friendships.
And my history is I grew up in a house that fostered.
So I've always been very advocacy led. I've always
been quite limitless. I've always been quite
challenging of not rules, but I've always had
quite a deep set real thing about injustice.
Yeah, like moral compass is quite strong and
you're the voice for others maybe. Yeah, like
my values are really ingrained in me. Like I
can't move away from them. I'm flexible, but
there are some things, you know, that I suppose
maybe a bit of subconscious bias in terms of
pre -set ideas. but more about the stuff that
matters and less about the stuff that doesn't
matter. So I've had a career in fostering. I
was a director of a fostering agency that my
parents set up. It was a real family thing. We
all worked there until Oscar was around three.
I worked in a placement team, so lots of matching
for children. you know, rebuilding and putting
the pieces of that mirror together and understanding
and accepting that it might all go back together,
but it's not the same. So how can we look at
different endings and how can we rebuild? Because
you can, you don't recover from things, but you
can move in different ways and celebrate different
plans. Did you know that? have you yeah we did
full long -term respite and emergency yeah we
did it for about two three years amazing yeah
so I've got a huge heart for that I totally get
how that could shape you as a person having grown
up in that world yeah Yeah. And then to go on
and be part of the framework of, you know, and
understanding, I think, the landscape of it,
but also from a lived experience point of view.
I think there always needs to be lived experience
wherever there are decisions of people that maybe
are not the centre of their story. And I think
that's where it crosses over into SEND and autonomy
and all of those things. Because when I had Oscar,
we were moving in a very different way. You know,
I was like, oh, he's the third baby, he's just
lazy. You know, I had two other kids that did
everything for him until he was nine months old
when he had quite a bad accident that hit his
head. We were abroad at the time. He had... a
bad accident where he fell he was a very lively
baby and he put his feet on the table pushed
himself back and hit his head and he was unconscious
for about 45 minutes so and we were in France
at the time so my husband then past tense my
husband um we had to navigate our way through
France with two very worried children, six and
11. I had Oscar in my arms. I didn't even put
him in his car seat. He was just out. And, you
know, it's very sobering at that time because
you don't know if they're OK. And I just happened
to check his pulse because I thought he'd broken
his neck. We got there and it was a very different
experience. They took him away from me. They
wouldn't let me in the room. He was concussed.
He was okay in the end. And I was peering through
and he was pulling the phone off the wall and
like shaking the bath. He's fine. But what happened
following that is he started to present very
differently, very quickly. And I don't know whether
or not that was in line with the headbang or
because he wasn't doing those things anyway,
developmentally. And we were then expecting him
to, but there was a sudden change. And he, when
we came back to the UK, he had lots of exploration
and lots of doctors involved with him. And he
had an MRI and they came back and said, there's
no, they didn't see any brain injury at that
time, but they did see lots of, he had all his
blood testing done and everything. There was
no duplications. There wasn't any chromosome
or anything. But they then begun an assessment
and they diagnosed him as autistic just before
he was two. Okay, wow. And then what followed
then was a few years of me going, why have I
got the angry one? Why are all these other children
that are autistic doing other stuff? Like, it's
more than that. It's definitely more than that.
And obviously, I always had neurodivergence and,
you know. lots of other things on my radar because
of the referrals that I'd read for so many years
and I kind of knew that Oscar was a big profile
but I was just going to let him... grow into
himself like none of it seemed to be affecting
him right and I wanted to just wait and see but
it's been a bit like peeling an onion my children
obviously were my other two children were obviously
very thrusted into being the young carer that
I had always been and they took to it like ducks
to water you know they've always advocated for
Oscar I always think if you want to know how
to treat an autistic child look at their siblings
and it's so true there's an acceptance there
of he's got a personality in that sibling group
yeah and the rest is not isn't it I totally see
that the sibling yeah that is so true and that's
something that I didn't consider but yeah there's
I've met so many wonderful siblings through teaching
and it is just unconditional acceptance love
advocacy yeah I totally agree and they haven't
chosen you know I choose to be a teacher of SEND
They haven't chosen this, but they absolutely
rise to... Well, the thing is, I think it's because
they see him first. Yes. They didn't have a preset
idea of what he would be like. Just is. They
know he's just like this. To them, that's him.
You know, and I think as a parent, because we
were modelling parenting based on our other children,
we may have had a preset idea of what he might
have been like. So for us, there's not losses,
but there's different paths and different understandings.
But for siblings of children with SEND, they
just see them. And that's, it's lovely. Yeah.
But it comes with challenges and barriers, but
it also comes with lots of celebration. You know,
I managed to, I think your childhood is the most
precious thing. And if it gets broken. You can
repair it. But for me, I managed... My two older
children, they're now nearly 19 and 23, both
believed in Santa until they were 16, wholeheartedly.
They would say to me, Mum, they've said that
he's not real, but I can feel it. Like, how ridiculous.
Like, imagine not believing. And I kept that
until they were 16. So I think what having a
child with multiple complex disabilities brings...
is a real age of innocence over your house. And
I really celebrate that. And I feel a bit smug.
Yeah. I feel smug because there's so many things
with Oscar that we don't have and that we can't
have. But if you balance it out and you reframe
it and you look at the things you do have, you
know, I have a 12 -year -old who wakes up every
morning like it's Christmas Day. Yeah, that's
magic. And so present, I guess, as well. That's
something I notice in the... children that i
have the privilege of working with is is always
just in the now there isn't there isn't a thought
about you know what happens next week or you
know it's it's all so present there's no rush
it is just what is interesting now and often
they notice things that we are too busy to notice
i i remember it was about 10 years ago actually
that i was working with some teenagers and he
said look at the trees and I was like oh yeah
the trees yeah nice he's like no the gaps between
the trees and I was like oh my god yeah like
the light was coming through the gaps in the
trees and I wouldn't have stopped and looked
at that you know but it is like an awesome experience
when you stop and are told to like just stop
and look at how amazing this world is or this
shadow is or this stimmy toy is or whatever it
is it is that reminder of just slow down And
no tears. I think for families as well, you know,
there are deficits, there are barriers, there
are things that we work through. But what we
get to experience is joy. Real joy. Joy that
you can't set up. You know, Oscar's most absolute
favourite thing in the world is the wind. He's
12. He laughs. And you can't make that for him.
So it's magic when it just is. Like this week,
I can imagine it's amazing because it has been
so windy. He's got a kite and it is the most
simple kite. It's bigger than him. It's got three
strings. You put it up and it just goes. And
it's absolutely stunning because he's running
around the garden and he's flying. I mean, he
did put it down on the ground. He sat on it because
he wanted to go riding on it. But there's an
element of Oscar that is so split. And I think
that's the ADHD and the autism working together.
And then when you add learning disability on
top, you know, because he's got a real lack of
understanding of danger and he's so innocent
and he needs help with everything, dressing,
everything he needs help with. But he'll walk
past you and just give you a couple of Stormzy
lyrics. And you just think it's a reminder that
you have to add his personality on the top. And
you have to not assume that he doesn't want to
take part in things that are age appropriate
too. There's a real, you never know which...
what zone you're going to be in. So you just
have to be open to all of it. I just recently
took him to a soft play and the lady came to
see me and she said, are you the mum of the boy
with the iPad? And I said, yes, I am. And she
said, would you be able to come with me because
he's running around the car track the wrong way?
And I went, which we like that motion. She said,
but we're trying to find his trousers. And what
happened was. Oscar has very, very severe ARFID
and he's under the crisis service at Evelina.
So every month after weigh -in, there's always
a pound in it whether he's going back in the
crisis service or if we're not. So he's very
slim and he wears trousers that are about seven
to eight. And it was his birthday and I put this
big baggy pair of skateboarding trousers on him
thinking that he was going to look cool with
a drawstring. Well, as he's running, these trousers
just keep falling down. So he's obviously thought,
oh, sod it, I'll just take them off. No one will
mind. I mean, he's tiny. He's not a 12 -year
-old. But I wanted to, I have things, you know,
like when my son started secondary school, he
really wanted to wear a pair of Calvin Klein
boxer shorts. So when Oscar started secondary
school, Oscar wore a pair of Calvin Klein boxer
shorts. Because I think you don't treat... different
you if that's what his brother wanted i don't
know he might have wanted that it's an opportunity
right and then he can always say no or show no
or gesture no however he communicates that but
it's just always say no yeah right so it's just
giving that opportunity isn't it and it's in
its person appropriate so it could be nursery
rhymes one day and mr tumble and it then it could
be like you say stormzy and calvin climax i'm
sure it's the next and it is almost it is you're
right it's being open to All of it. And all at
once. Because you've got teenagers coming up,
haven't you? I know. You've got teenagers. But
also his disability, like learning disability
will make that look different. But his body's
still growing. It's such a confusing time for
everybody to navigate. Well, I think that things
can be confusing if you make them. I think that
we just concentrate on happy being me. Where
am I at today and what can people do to aid me
in where I'm at? So I'm quite good at being a
behaviour detective. He can't always tell me
how he's feeling or what he's experiencing. He
definitely shows me. I definitely know those
signs of if he needs to take his shoes and socks
off and go and run around in the garden and connect
because he'll become heightened, heightened,
heightened. And it's like being on a stag do.
He's so loud. And he'll run around the house.
And I think we need just nature. We just need
to get out. We need grass or water or wind or
whatever it is. And he doesn't have a very big
energy space because he's always in a calorie
deficit. I take him somewhere and he'll be having
the best time. And then after 15 minutes, you
see him completely drained and he's empty. So
for that, I feel I need to... give him sensory
breaks rather than a lot of input because actually
I'm forcing him to being empty and then he has
to try and so I do little sensory snacks you
know we might run around five minutes before
we've got to go somewhere in the car it won't
be let's get 20 minutes getting ready to go on
a trek because his body just can't, you know,
and he's got a wheelchair and when he gets empty,
he'll get in it and he'd just recharge. But for
him, I think it's about just meeting him where
he's at and just being open to, if we're facing
less barriers and challenges that day, you're
going to see a little bit different. You know,
he presents lots of, he's got lots of different
profiles and he is quite spiky, but he's also
very, he's a real black and white concrete thinker.
So it's either all right or it's not. Right.
There's no in between. There's no middle ground.
No. And it can change really quickly. How do
you navigate that? So how do you, is it like
tiptoes? Could it be different every day? Are
you always like waiting for the change? Are you
finding that? Or, you know, how do you navigate
that? I've been walking on eggshells for about
eight years. And Oscar was very heavily medicated
in his younger years. And I used to feel like
he was stuck behind a sheet of glass. Like it
was like you're masking it. You're not really
helping him manage it. And when he went into
the crisis service at Evelina, they said, look,
this is going to be terrifying for you because
I know that this medication has given you a bit
of a comfort blanket. But what we want to do
is wean him off everything so that we know what
his baseline is. His baseline was actually less.
than what it was when he was on it and I think
it's because he he's got that real interception
he can really sense when there's a change in
his body and that's actually making him more
anxious so now because when you give him a drink
he look because he'll only drink out of a bottle
of water he'll study it he'll be like have you
put anything in there and it took him a long
time to stop doing that and I just thought I
need him to trust me He's not going to willingly
take anything. So you're removing his choice.
You're giving him something that's making him
feel different and making him really anxious.
And now he's got that real trust of he's not
on any meds. And so we're able to, I feel, de
-escalate things when they go wrong because before
he was having like a second wave of it. And I
don't know whether or not that was. Because how
he felt wasn't real enough for him. So I think
he can trust his own feelings now. And he can
feel where he's at. So he's more likely to be
able to take a step down. rather than completely
lose it. Because I think before he wasn't able
to have that internal measure of where he was
really at. He was just reacting. So his behavioural
changes now he's not on meds are more deliberate.
I'll notice he started to click his tongue. He
makes like this rolling sound. His mouth is closed
and he'll make a rolling sound with his tongue.
It sounds a bit like a dolphin noise. And that's
a sign he's becoming anxious. So then, you know,
with him, I give choices. And I say, Oscar, outside?
And he'll say, yes or no. He's very deliberate.
He's very clear. But for him, he wants to be...
I mean, before, when he was medicated, he couldn't
even walk past a room. He would attack you. Because
he was so anxious about the thought of you. Whereas
now, we're not on the meds. His trigger is time
demands. The minute you give him a demand, that
clock starts ticking for him. So we don't have
words. Not being quick enough, he's anxious about
finishing what he's doing. What is it about that
anxiety? Just in general, if you give him a demand,
a verbal demand, he will then begin being anxious.
So we remove words. We don't have words. We have
visuals. We don't tend to use pecs because he
wants to stim with it or hoard them. Anything
that's real, he wants to collect. Okay. And when
they try to do pecs with him, he would just give
it back to them and go, I know this. Because
for him, it was too hard to think about. So he
just told them that he knew it. And I think a
lot of those... processes are to do with an exchange.
Yes. There's a child who doesn't want anything
from anyone. He can't be bribed by food. He's
not interested. He's not really that interested
with bubbles. If you blow bubbles at him, he'll
pop one and walk away from you, blow you out.
It's all in the moment. If he's popped a bubble,
he's not going to ask you for more because he's
had one bubble and he's happy. Box ticks. So
what we did was we got a Polaroid and we took
photos of actual things that motivated him, which
wasn't very much. It was a book, because he always
had a book under his arm. It was a book, his
muslin and his actual bottle of juice. So we
would, I would put the muslin one on the stairs,
the juice one on the fridge and, oh, and we had
a stop sign. And then we grew it a bit bigger.
So then we took a photo of the car. So we stuck
that on the front door. We then took a photo
of the climbing frame and stuck that on the back
door. So it was very deliberate. It was, do you
want that? And he knew what it was because it
was a photo. Yeah, I love that. I love the Polaroid.
I haven't considered that before. But they're
a lovely size, aren't they? It's instant. So
you don't have to wait, you know, printing time
or whatever. There's no laminating to do. They're
pretty hardy as well, aren't they? You can kind
of wiggle them and they do last longer than printed
paper. We backed it up with the word as well.
So we used the same font that they use for communicate
and print because we thought we might be able
to move over to some visuals. He did accept the
PEC symbol for stop and more eventually. But
his now and next was very simple. It was photos.
And then when he started school, I did a strip
and every day we would stick on a photo of school
or a photo of home so he knew what day it was,
where he was going to be. And then before we
moved outside of that style of communication,
his words came, but they were only enough to
get him what he needed. And that's still the
same. It hasn't expanded. It's not like relationship
building, conversational. No, no two way. Say
this, get this. Say this, get this. Yes. So he
says, Oscar likes. He'll come to you and he'll
say, Oscar likes. And then he'll say the words.
So he's asking you. And if you ask him a question,
he won't answer you. He'll give you a block of
information he's memorised from YouTube, probably
in another language, as if to say, you're in
my yard. I will communicate with you when I want
because otherwise it's a demand. I mean, at night
time, he knocks on his bedroom, on his bedside
table and he talks to it. I think he thinks that's
where the monitor is. So he'll order, but he'll
order in an American accent. So he'll knock and
he'll say, excuse me, ma 'am, could I get nice
water? And that's him asking me for water. But
it's a saying that he's learned. from somewhere.
So that's what he'll do. He'll learn sayings
and phrases, and then he will use them to ask
for what he wants. So have you heard of Gestalt
Language Processor? Yes. This is what it sounds
like he is. So they kind of learn whole phrases
that have meaning to them, even if it's not the
meaning of the actual words, it has meaning to
them. So, can I have a bit of water, please,
mum, is, hi, ma 'am, can I have a bit of water?
Yeah. So, yeah, the gestalt. And there are stages
to that. Have you noticed that his gestalts have
been added to or adapted in any way as he's been
kind of using them? Yeah, so he does build on
them, but also they have phases. And he does
this with his eating as well. So he'll build
up to five items and then he strips it back to
the first one. So I've noticed that's what he's
doing with his language building. He is learning
and memorizing phrases from programs and he'll
move through them. So it starts with My Petsaurus.
It then goes to Bot and the Beasties. It then
goes to Octonauts, which is more complicated
and includes some imaginative play because he'll
be using the figures. And then all of a sudden,
when he gets to a limit, It's almost like it
goes back to the beginning. It's fascinating
that you've noticed that pattern because we do,
with autistic children, there's lots of patterns
and rigidity. And I think that's incredibly intuitive
of you to see those patterns. You did a post
earlier this week about his bed and the rigidity
and patterns around that. It's quite ritualistic,
isn't it? Are you all right talking a little
bit about that? Because I feel like it's all
linked, isn't it? Also as well, with the food,
he'll only eat certain food groups when he's
in the Petsaurus phase, and then he'll build
on it when he goes to the Botanobesis phase,
and then he builds on it again when he goes to
the Octonauts phase. So when we're in the Octonauts
phase, he'll eat skin off chicken, pepperoni
off pizza, cheese off the cheesy pizza, and his
crackers and his bread. So that's the five. But
when he's in the Petsaurus phase, he'll only
eat the crackers and maybe the bread. And I think
he's memorised, actually, that actually as he's
developed with his eating, that's what he was
interested in watching at that time. So that's
what it means for him. But he's going on to the
collecting things. He's always had soft toys
and they're his friends. So he will organise
them in blocks. So he's got all of the Batgoat
Yardigans toys and they've got to be together.
And if he's in that phase, he'll talk to them
and play with them and they're his friends. They
mean a lot to him. Then started to become really
obsessed with Pokemon and he started to collect
those and he started to want to quiz me. on Pokemon.
Now, if you've ever done a Pokemon quiz, there's
thousands of them. So it was Pokemon. And then
he started to like dinosaurs, but they had to
be along the bottom of the bed. And I thought,
hold on a minute. This is getting a lot. He then
started to collect from around the house. So
he always hoarded books and wooden peg puzzle
pieces, but they all had a purpose and they were
his thing. So when I used to pick him up from
the assessment nursery, I would need to bring
an exchange with me. Because he would have a
particular comfort item there that he would carry.
And he would be unwilling to let it go until
I exchanged with him. Then he would be willing
to put it back in its spot, pick it up next time.
So he always had to have a comfort item. But
he started to collect them in the bed. When they
didn't have a purpose in the day. They became
to have purpose at night and I noticed that he
would be checking them. As the things got more,
his checking got more. Now this was only then
soft toys, but he then went round and collected
all his baby books and wanted them in the bed
as well. And it at one point got really, really
bad and I said, you know what, we're going to
have to get him a double bed because he was in
that cot that was like an egg. And literally,
in the end, there was only space for him. There
was so much. But even in the cop days, I was
having to take a photo of it before I made the
bed. Because if anything was out of place, he
would stay awake all night reordering it all.
So I brought this up to his consultant many,
many times. And she was like, you know, he's
a bit young for any intervention, really. We
just need to see where it's going. But at the
point now is that... Oscar has suffered quite
a few losses in the last year and a half because
dad left the house and it's got worse. Like the
hoarding and yeah. It makes sense. If he's feeling
out of control of his world, if things have changed,
then he's going to want to try and take some
control back. I .e. food is a classic one. Holding
bow because you can't make someone go. And yeah,
hoarding because it's... It's trying to keep
their world the same. It's trying to keep control,
isn't it? How to manage that. But he'll cut you
like a knife because I spoke to a psychologist
about his loss because what he was doing was
his dad gave him a phone for his birthday and
it had lots of photos on it, like all our family
holidays and everything. But he was going through
photos and removing certain people that are not
in our story now. because we've lost connection
with the whole of his side of the family, aunties,
uncles, cousins. He's making sense of it. He's
compartmentalising that. He's remembering people.
Right, interesting. Is that healthy, would you
think? I think it is. Well, I think it is. What
the psychologist said was he's just accepting
a new part of the story. He's organising who's
important and who isn't. um and he's removing
people that don't have a purpose yeah or it might
be i mean let's not assume right let's not assume
that we know it could be that or it could be
actually that's too painful to look at because
i'll miss them but regardless of what that is
both are okay aren't they it's obviously managing
it if that's his understanding then it's more
than okay We had lost before that because my
best friend died and we became a bit blended
because obviously she had children who came to
stay regularly and they're part of our story.
And I think Oscar understands loss. I think he
does. I think he's got quite a grown -up understanding
of loss. And obviously this loss is a bit ambiguous.
It's not... It's not loss as you would understand
it, but for him it's change. And I think he's
really tightened in. But at the moment his hoarding
is very much a celebration because they're items
that he loves. Yeah, they're safety items, aren't
they? We did have before when he really loved
things, he had to destroy it. Really? And then
he would be very sad. So if he opened a gift...
that he really loved, and it was a book, he would
have to destroy it. He would enjoy it, and then
he would have to destroy it. As if I've controlled
that, I've enjoyed it, and I loved it, and now
it's done. Right. Like, it was so overwhelming,
that laugh. It couldn't keep going. I always
buy two. If I know he's going to love it, I buy
two. And he'd never share attention. So he'd
love you to sit next to him and enjoy a book.
But you had to have your own. He was going to
have your eyes out if you touched that book.
But he'd be happy then. Oscar would have one
and mummy or daddy would have one. And that's
fine because you're not a threat now. Yeah, it
is. He's in survival mode, isn't it? He's absolutely
in fight or fright all the time. It must be a
hard thing, mustn't it, for him? Yeah, well,
this is when I thought of the word born anxious.
It's because we couldn't quite put our finger
on what was going on for him. And the consultant
said he was just born anxious. He's surviving
on probably a seven or eight naturally on that
anxiety scale. So when you see that big explosion
of it all coming out, what you need to do is
reframe it and think how hard he's had to work
at keeping the lid on. Don't look at the end
result of it. Think about how hard he's worked.
And I think that we don't concentrate enough
on how hard our kids work at just being them.
There's always a concentration on working a bit
harder, being a bit more resilient. And I think,
actually, why are we not celebrating how hard
they're working or how resilient they are? Because
for my kid, when the bomb goes off, he's actually
been working really hard up to that point because
it's there. It's not, whoa, where's that come
from? It's always there. And I think that's where
we meet him at. We meet him at... someone who
is highly anxious all the time and we live in
that way yeah which is a real invisible labor
for parents of children that are anxious because
trust me anything could happen risk assessing
looking forward well I can't do that because
then that will happen that and I've got to get
that food in because then that would and oh they've
changed the packet to that so I've got to do
it it's like constantly risk assessing trying
to protect them from any anything that might
tip them over the edge of course you can't do
that because the world isn't controllable but
you try your best to and yeah I can imagine it
absolutely it becomes it becomes your normal
so for anyone else where you know if I was to
sit down and say you know my son has autism ADHD
dyspraxia a learning disability ARFID and he's
got extreme anxiety somebody would go oh well
I don't know how you do that but it's about adapting
and learning to live in a different way I don't
pick that up and carry it around it's been dropped
on me so you you grow you learn you you adapt
you learn to carry it and this is why I find
that It can be quite weaponising when people
say to carers, long -term carers, parent carers,
you should take a break. Maybe I don't want to
take that weight off because I might not be able
to put it back on. It's like showing a homeless
person where you live. You can't live here, but
you can come and have a look round. No thanks.
I don't want a night in your life. I don't want
a night out at the theatre. with drinks and dinner
and all of that because I don't get the freedom
of it. I just get the experience of it, knowing
that I'm going to step back into. So I don't
want that. I want validation that I live different
and I actually really like my life and I'm really
proud of all the things that we've adapted to
and carved out for us. And we're not apologetic
about it. I love that. And I love to hear you.
I really do love that about you and your account
and your clothing. Everything shouts that, doesn't
it? And I'm really pleased that the audience
listening to this, of teachers and parents, can
hear you say that. It's really important. Hard
things are hard. Hard things are hard. Validate
that for yourself. And say, you know what? I've
worked really hard on myself. to live in a different
way. And I'm proud of myself because it's not
an overconfidence. It's an awareness of your
skill, isn't it? And when we share parts of our
lived experiences, the things that happen to
us, the things that shape us, you're writing
someone's survival guide for them. If you can
give a little bit of yourself to someone and
they're going to unpack it and it helps them,
great. Because that's what I do. I've literally
built myself on the wise owls that paid it forward
to me. You learn from other people. And I think
that what we need to do is just make allowances
for the fact that some people work really, really
hard all the time at a low level. The consistent
hard work. It's not about the slog. It's not
about getting yourself to burn out. You've got
to keep well. Because for me, I feel like I got
a job with Oscar that I didn't ever apply for,
that I wasn't qualified for, that I've had to
run with. And of course I accept it every day.
I can't resign. And there's no days off and no
one's coming. So build a palace, build something.
Decide what you want to be from all of those
things. They're not all bad. They're not, you
know, it's not all bad. It is hard. It is consistent,
but it's the life that we're in. And you know
what? Not everyone gets one. You know, I think
understanding loss and feeling loss is a massive
part of our journey as well, because we have
to celebrate the small stuff. We have to. There's
glimmers in everything. There is. There's glimmers
in everything. It happens in crowds as well,
doesn't it? The loss and the celebration, it
all happens all at once. Over the same thing
sometimes. Yeah, and it's okay. It's okay to
be a bit jealous of people. You know, it's all
right to say, you know, well, you're just showing
off now. You've slept all night, you know. It's
like last night. I have to, I've trained my brain
to celebrate something in everything. Oscar called
someone a very bad swear word last night that
rhymes with James Blunt. Very loudly. His diction
was perfect. And you know what? I used to dream
about what his voice would sound like. Yeah,
absolutely. And when his voice came out, it was
American. And he knew what it meant. You know
what you were saying about, is it just thought
learners? You know what you were saying about
that? Yeah. Oscar's first word was, I love you,
in a robot accent. Really? I got it on video.
I was going, I was signing, I love you, like
that. And he just said it. And everyone was like,
good. But we have to assume competence, don't
we? Because on my daughter's birthday, we were
all singing happy birthday. And just as she was
going to blow the candles out, Oscar started
singing solo the entire song. Never done it since.
Doesn't need to. The entire song, yeah. But for
him, that is the thing. And that used to be with
my other children as well. When my son started
school, he was one of these kids that he didn't
want me out of his eye line. And I used to have
to say to him, we have to go to work. I have
to go to work. You have to go to nursery. Mummy
has to go to work because we need pennies. And
he used to say, I don't like pennies. We don't
need them. And when he went to school for the
first time, he took his shoes off and he went,
oh, well, that's done. So I said, well, no, you're
going back tomorrow. And he went, no, I've been
now. He thought the school was a one time thing.
And I think Oscar's a little bit like him in
terms of if he's done something, he doesn't see
a purpose in doing it again. If he does a puzzle.
He don't want to do it again. He's done it now.
He is very like that. If he can't see a purpose,
he'll do it once. He can write his name. If you
ask him to write his name, he writes no. N -O
-P -E. As if to say, I can write. There's no
point in it. I'm over it. I've written my name
once before. It's not for me. Kind of love that.
I love the rebellion of that. Yeah. Well, that's
why I did the inclusion revolution, because I
think we all need to be autonomous. You make
decisions every day about what you wear, how
you wear your hair, what route you're going to
drive in your car. Our kids don't. They get ferried
about their whole life. Everyone makes decisions
for them. And do you know what? Sometimes little
people can teach us stuff. A lot, yeah. And we
all assume that we know it all. And I think sometimes
if Oscar's telling me no... I always listen.
If Oscar makes a choice, I always listen. Because
do you know what? He might know best. Yeah. He
might. Absolutely. And that is the assuming competence
thing, isn't it? That is what I mean by that.
Let's assume that they know more than us and
we have a lot to learn and they're our teachers.
Absolutely. Well, unless he's saying, let's burn
this down or let's blow this up. And that's where
your parenting comes in of making people that
same, right? But yeah, absolutely being open
to being led by them is absolutely the way to
go. Can we talk about the inclusion revolution?
Can we talk about your brand and all of that?
So let's talk about the inclusion revolution
first. What is it that to you? Well, I think
that it's about learning and parent carers for
me are, you know, I give a salute to every parent
carer and I think whatever mindset or mind frame
or faith that you have, it's about learning to
be, and I think all parent carers have had to
do it, it's about learning to be bold in a gentle
way. So all conversations are two -way. It's
not about sitting on a pedestal assuming that
everyone's not doing right for your child and
you don't. Actually... You're the expert by experience.
So if you don't educate other people in terms
of what's right for you, don't accuse them of
not meeting your need because actually that communication
is two -way. So the inclusion revolution is about
flipping the narrative about the us and them
scenario. Now, we all know there are bad guys
in services that don't want us to have a nice
experience. And we all know that that's led by
greed. But actually... Every other conversation
that takes place about need needs to be a revolution.
We do need to be really bold in a gentle way
and say, do you know what? Come and take part
in our conversation. We're not a hierarchy. We
don't think we know it all. We do know things
and actually we're willing to have that conversation
because if you don't, there's always going to
be conflict and I think then that allows... and
challenge to be viewed in a negative way. You
know, we're not a drain on society. We do need
reasonable adjustments. We're not apologising
for that. But we're also not demanding it because
I think that there can be a view on parent carers
and people with disabilities in general that
there's an expectancy. And I think what that
needs to be backed up with is in a reminder that
actually they're human rights. Yeah. They're
kind of in the Equality Act. So the inclusion
revolution was about we don't actually have to
explain why we need those things. They're human
rights, actually. We're going to be really bold
about showing you that, but in a really gentle
way, and it's about composure. You can challenge
opinions, but don't challenge the person. Because
actually everyone's entitled to believe what
they want to believe and in their own levels
of understanding. You know, you have to meet
people where they're at. Not everyone sees the
picture as clearly as you. That's okay. We can
have different conversations about inclusion
based on people's, you know, intersectionality.
Where are they from? Where are they living? What's
their landscape? Let's not all sit in the suburbs.
and talk about having a blue badge. Some people
live in the city. They don't have as much available
to them. They might live in an ethnic minority.
They might live in a different religion. We have
to open it up as a revolution of inclusion. It
doesn't only look like one thing. and be a bit
more open to it. And that's why there's all the
colours there and because it's about encompassing
all experiences of inclusion, good and bad. We
always think inclusion, oh yeah, that's because
they're not doing that or they're not doing this
or I can't get this or I'm fighting for that.
We have to fight for everything that we have
and then we have to fight to keep it. So we need
to be, I think, a lot of people, what they do
is they fight to get what they... And then they
go, okay, I've got that now. We need to not do
that. We need to carry on fighting and go, okay,
why couldn't I get that? Let's go back. Let's
make it not about me. And let's go back to why
we couldn't get that. What is there? Because
when you meet a challenge, it will be because
of, usually be because there's a lack of understanding
about why that's needed. Yes, yes, yes. I always
say this. If someone's been really unkind to
you, be kind to them. Because there will be something.
There'll be a bump in the road. Even if it's
about money and the government and budgets, they
clearly don't get it. why that's needed. So it's
about sitting at a table, I think, with people
and having a conversation because all of the
best arguments that you can have are spoken.
Because if you remove emotion from it and you
look at that's how you make change, isn't it?
Because if not, you're just being emotive. You're
getting out how you feel. Yeah. Which is hard.
It takes a lot more strength to do it gently,
like you said. It takes a lot more energy to
do that, doesn't it? It does. To keep composure
and have that conversation. When it is emotional
to you, it is personal to you. It's really, it's
a big ask. I totally get what you're saying.
I totally agree. I couldn't agree more. It's
hard. It's really hard, but I always think sometimes
I reach a level of angry where I actually feel
calm. It's weird. Like, I've had some really
big stuff happen, stuff where you've wanted to
almost attack people because it's been quite
ableist. And I've felt calm in those moments
because I've thought, this person definitely
needs something from me because they're not getting
it right for me. So something's missing. You
know, I've had doctors, Oscar had some exploration
done when he was really young and had one of
them EEG things and we went to the doctor afterwards
and we didn't even get in the room and the doctor
didn't even turn around. He just shouted out,
your son is not epileptic, goodbye. And I went
into the room calmly, closed the door, sat in
the chair and I thought, no, I'm going to gently
demand a conversation. I'm not accepting that.
That's not... Whereas... Most people would have
probably had really strong emotion and gone off
in a half and had to go at the receptionist.
And then the change happens. You're not changing
the narrative. You're not helping the next person
who also has that conversation put on them. It's
just that cycle, isn't it? Whereas I suppose,
yeah, you're right. To break that cycle, we have
to do something different, which might be...
leaving our ego and emotions at the door and
actually educating in that moment which is really
amazing that you did that because it's so hard
to have a new mindset the neurotypical parent
in me wanted to go and have a go at the receptionist
and ruin her day but that's not her so I forced
this guy to sit and have a conversation with
me and he then basically gave me the evidence
that I needed because he said he turned around
and he said he looks nice and I went and he said
big badge for you mum he almost looks normal
so I literally I said wow wrote a report sent
it in and he was actually reprimanded for being
ableist and has been on courses and changed his
practice so you can by meeting things in a different
way which is really hard I'm not saying it's
easy change practices that then impact other
people What you have to not do is be a mirror.
If someone ruins your day, you don't go and ruin
someone else's day because it makes you feel
better. Do you think that's easier when you know
you've got community? Can you be stronger together?
Is that the idea of the clothing brand? To kind
of bring people in together to say, I'm not doing
this alone. I don't have the strength to fight
this or to have this conversation alone. But
I can with you lot. We can all do a little bit
together with whatever energy or capacity we've
all got. It's a louder voice. if we do it together
is that kind of the idea of the clothing there
yeah like the narrative was when Oscar was really
young I always felt on my own and it's a really
lonely space when you've got lots of diagnosis
going on no one can give you any answers you're
not really sure why your child's presenting that
way and no one comes around anymore you're a
bit much and it's lonely and it's What born anxious
is, is a conversation. It's a way of communicating
when you are on a bus or wherever you are and
you are full and you are completely absorbed
in meeting the need of your child. You're communicating
with people. It has the power to change your
experience. I've had people give me a thumbs
up and mouth, you're doing a good job. But would
they have viewed him as naughty if I wasn't communicating
his needs on the clothing? Probably. So that's
what it was about. It was about... letting people
know that maybe you're dealing with something
maybe that they wouldn't have thought about.
Yeah, I suppose it's making the invisible visible,
isn't it? Also being, you know, a bit ballsy
really in terms of, you know, be a nice human
in the end. Don't argue with me, just be nice.
That needs to be on a shirt. Have you got a shirt
saying that? Yeah, be a nice human in the end.
Yeah, we have. But, you know, first of all, the
original collection was all about the person
wearing it and how to communicate their needs.
I do not like loud noise. I am anxious. All those
really big things that look like a million and
one other things. They look like reactions. They
look like behaviour, which look like judgement.
So it was about communicating all of those things.
You know, if you're wearing something that says...
I do not like loud noise. That's very deliberate,
isn't it? I'm anxious, buffering, which is another
one that I've got. You know, don't keep adding
one more word in, one more action, one more.
Just back off and let my son process what's going
on. And he will respond to you when he, you know,
all of those original collections. But then obviously
when people start interacting with you and you
start having feedback of that really changed
my experience. I'm not feeling my own. I'm really
feeling part of something now. You build community.
You do start sharing other messages too. You
know, we have one that says, be a nice human
in the end. We have one saying, don't judge others,
improve yourself. So they're very deliberate
messages, but some people feel that that's a
little bit overconfident. But I think you just...
You can apply, you know, but they're organic
label free because the sensory elements of it.
Because until Oscar was about three, he was naked.
He would not wear clothes. He would just hang
them off. You know, the main saying in my house
was, Mum, Oscar's naked again. Because he just
didn't. It's not just what's on the clothing.
It's the whole design has been thought about
from. The actual label -less concept to the softness,
to the messaging, to the clarity, to the community.
It's all embedded with inclusion, acceptance,
bold and gentle. Everything you're about really,
isn't it? Yeah, it's just about raising awareness
of different abilities. Having acceptance that
someone might, you know, I always think everyone's
going to have an experience of you. Make sure
that that's good. because you don't know what
else someone else is carrying around. So the
messages are, it's the start of a conversation,
whether that's an unspoken one, because you've
started a cog in someone's head thinking about
how to maybe change things that they do, or whether
it is actually an exchange you have with someone.
Even in a waiting room, if someone says, he's
sitting really well, well done, you're sitting
really lovely. Because on there it might say,
be kind, I am autistic. So really for me, it
was a way of letting people know that when my
son has emptied your handbag, grabbed your boobs,
stolen your car keys in 30 seconds, you're not
being mugged. And as he runs away from you, it
says... be kind, I'm autistic, they go... And
it allows that freedom of different experiences,
you know, because sometimes we can be quite reactive
in the world. And that's mental and it takes
that away, doesn't it? It is education, non -verbal
education. I just think it's wonderful. I am
going to stop it there, Kelly, because I cannot...
A better moment than to stop this podcast than
that. So I just, I love your, everything you're
about. You are so wise. And I know that the people
listening to this will have a head full of little
snippets of things that they can use, like little
mantras almost, either make themselves feel better,
to boost themselves, to explain to other people.
I love it. I'm so excited for this podcast to
go out. So thank you for sharing. So. like such
such raw and honesty I really appreciate that
your generosity of of sharing your life really
oh thank you I just I just think you know what
if it's happening to you anyway try and make
it meaningful yeah yeah do a good job you've
got to have something out of it you do do a great
job at that um those people listening where can
they find your clothing and all the stuff about
you because I know that they're going to want
to find out more Well, we've got bornanxious
.co .uk, which is the home of our clothing label,
but it's also the home of the blog. So it's called
Blue Sky Thinking. And I share a lot of our behind
the scenes stuff and how I reframe situations
that I'm living in. It'll make you laugh. It'll
make you cry. But it's also got About Us section
because we work directly with the Anna Kennedy
Online Charity, Merlin's Magic Wand, lots of
other charities, all through Work for Good UK.
And so you can read about our collaborations
and who else we work with and Mr Harvey Price.
But you can also look at videos and photos of
our neuro -inclusive fashion shows that we've
done. We've done two now. So it's bornanxious
.co .uk. And it's our story and our shop. Amazing.
And on Instagram as well, Born Anxious, which
is a fantastic and like you say, generous, raw,
real and hilarious Instagram. I just love it.
And I learn so much every time I see your post
pop up. So thank you so much for joining me,
Kelly. Thank you. And yeah, just keep sharing
in the way you do because it's just so refreshing
and so needed. Thank you so much. I've loved
this. I've sat down, had a nice chat. Thank you.